What’s Going On? 

 

 

Typical Tuesday

Aaaaaand…my tooth fell out. Ok, my filling fell out, but still. I was in line at the pharmacy and took a sip of water and Bam! That’ll set you free. I tentatively felt around with my tongue and found a crater in an upper left molar, I called my oral surgeon and got an app right away. When i got there he told me that he had thought about me that morning. He said, “Wow, it’s been almost a week since I heard from you. Don’t get me wrong, I just don’t want to see you in the office for a long time….you’ve had such a hard time.” He’s so nice like that. Anyway, it’s going to need another root canal so.…#11 here we come! BTW..Thursday is Root Canal Day. You have to keep your sense of humor…or find one if you never got one. 
 
 
 

Dry Mouth

Many of my meds cause dry mouth. I know this…I read the little paper thingy. I wish so much though that I had known how damaging it could be and that I should be using preventative measures. The products my oral surgeon has suggested that I use daily now are great, but the damage has been done.

During the many months of COVID I didn’t see my dentist since everything was shut down. No big…I brush and floss.

In the past 16 months I have had 10 root canals, 22 cavities and 9 crowns. 2 of the root canals had to be redone because despite being so careful during the surgery infection still set in due to my super low immune system. * Crohn’s…sigh *

I’m now using Biotene products my doc suggested for me (I don’t work for them or anything) and they are fabulous! Toothpaste, mouthwash, gel and a really nice, moisturizing mouth spray. Lightly minty fresh!

Don’t do stuff without talking to your doctor…I just like to share my experiences. Information is so precious! I hope that this info can be of some help to you.

 
 
 
 

A Medical Marvel!

3 weeks ago on Sunday I had a kidney stone. I knew it was a kidney stone and told Terence so. He had just started mowing the lawn so it took a lot of crazy waving while hanging off the back door to catch his attention. Neighbors were all agog 🙂

We went to the ER where I told them so as well. They were skeptical, but then realized that I have Crohn’s and I know what I’m talking about. 

I was wrong….I had two kidney stones. My right kidney this time.  One of the stones had already moved into the ureter and the other stone…a little bigger…was just hanging out in my kidney. The pain was unmanageable by any of their pain meds…they tried for 4 hours…so by 9:00 p.m. they called the surgeon. He came in, took the stones out and we were on our way home by 10:00pm….dun..dun..dun…

2 days later I emailed the hospital through Mychart (I love having that) and told them that the pain was really bad…almost…unbearable. They said, “Well, that’s probably just the ‘really aggressive’ stent we put in on Sunday. What what what?  Naturally I’m confused as Terence and I didn’t know anything about this stent. “He didn’t take the stones out”, they said. “He just put a stent in.”  * Twitching eyeball *

I soon found out the surgeon had gone in and saw that I needed to heal a bit so he put the stent in. I get it, and it was a good call, but I want to know these things! 

They told me that I would have to have the stent in for 2 1/2 weeks. This is crazy! I mean, but why? Turned out that they didn’t have any room for me…one of the surgeons was booked and the other was out of town. 

* almost 3 weeks later *

The surgery was scheduled for Wednesday morning this week at 7:30. At 6:10 Wednesday morning they called me..and canceled the surgery. They said they were canceling all surgeries for Wednesday and Thursday because of an electrical problem at the hospital. I’m not making this up….this is what happens.

The surgery was rescheduled for Friday (today). 

I decided not to answer the phone if the hospital called just in case they tried to cancel again…

I’m in the prep room and the usual discussions about how to get an IV ensued. Although I asked for the ultrasound they decided they wanted to try without…just once. I told them very firmly…once. Obviously the vein blew so then they pulled in the ultrasound.  After 3 tries we were good to go! I was so happy to have the IV and by 11:30ish I was in the OR. 

An hour and a half later the surgeon came out to tell my sister the news. He had searched every inch of my kidney and…wait for it…there were no stones. He has no idea how this happened. He said that when I was calling for the past 3 weeks telling them that the pain was getting more and more intense and unmanageable, it must have been the stones as they eked their way out very slowly. I can confirm this was definitely happening. I’m now a medical marvel…I pass stones even when I’m not allowed. 

They have follow-up studies scheduled soon to try to learn why this happened. I told them in the beginning and again today…look at my history files. All of the crazies happen to me. This is just how it is. I think they heard me.

Although he didn’t take any stones out my surgeon removed the aggressive stent and put in a more ‘comfortable’ one. Pardon me, but this is hogwash…I happen to know there is no such thing as a comfortable stent. I appreciate the sentiment though so I thanked him regardless. He will remove said stent on Monday and I’m already counting the hours.

But wait! There’s more!! 

So, last Thursday (a week ago) I had my 9th root canal done and later while all this kidney nonsense was happening I noticed my tooth was hurting badly. I went to see my oral surgeon yesterday and found out that we need to redo the root canal. Yeppers, Monday stent comes out…Tuesday fun tooth day! So, please think of me on Tuesday the 28th as I’ll be visiting my favorite mouth practitioner. I know this is a lot of info, but for some reason I haven’t felt like doing much the past month and I was on a roll.

 
 
 
 

I really don’t like NG tubes..

Recently I went to the ER for a blockage and the dr on call decided I would benefit from having an NG tube put in. I told him that my blockages were always very close to my ostomy site…within a few inches usually so a tube would not be able to help. He wanted to do it anyway. About 15 minutes after it was in I started to see blood come up the tube. Like getting a flashback from an IV when it’s first inserted. I was not happy to see the blood and called the nurse. I told her that I wanted the tube pulled. A good while later the dr came in. This time it was a different dr. I found out that the other one had just finished his shift. I told the new dr that I wanted the tube out and why. He agreed and said, “They’re so archaic…I never use them anymore!” This was so upsetting. I was glad he agreed to pull it but really unhappy that I had allowed it to be put in at all since I had had problems with them before. I’m not saying that they should never be used. It just has been overused in my own experience and for me the risk does not outweigh the benefit.
This article I read today shows how dangerous it could be and was helpful to me…I felt a little justified about my feelings and concerns.
 
 
 
 
A Case of the Mondays
Yesterday was the worst flare-up I’ve ever had in my experience. Not only did I have the symptoms of a blockage but I had terrible chest pain on my left side and my breathing hurt worse and worse. I wasn’t feeling great at work earlier that day, but aside from a persistent headache, it was pretty normal. I taught my lessons and headed home. By 8pm I knew I had to go to the ER and by the time Terence got home from jazz band after 9pm I was considering calling an ambulance which I’ve never done. I listened to my own breathing like it was someone else’s and it sounded bad. My headache had turned into a piercing migraine. We arrived at the hospital to find it packed….mostly with people who looked like they just needed to go for a regular doctor’s visit. Because of the chest pain, I was taken to triage immediately and given an EKG. I was gasping for air during this test and just fought to try to keep calm…I lost that fight and just cried…They sent me back to the waiting room so my heart must’ve been fine…I still don’t know why I had such pain in my chest… We waited for a little over 2 hours…by this time my whole body was shaking like I was having a seizure…I took my glasses off when I got there so I didn’t have to see people watching me. I was dry heaving every few minutes, the pain in my head and right side was so bad, and know I was a sight!  Nurses were calling 4 or 5 people back at a time since so many were there for minor problems….I’ve never experienced this in an ER and let me tell you it was very frustrating!   I asked Terence to call Dad to come to the ER. When things are really bad and Terence is completely focused on me (letting me squeeze his hand to bits, holding back my hair, standing close enough so I can use him as a head-rest) I know that Dad will be there to answer important questions like, “So what brings you in today?” and “Have you been to the ER before?” I’m kidding 🙂 No, thankfully my ER doc had seen me the last time I had a blockage (almost a year ago) and understood that I knew my own symptoms. Dad answered all the stuff that Terence or I couldn’t.  Now it was the usual routine…finding the one person who can use an ultrasound to find my vein for an IV big enough to stand up to the inevitable CT scan that was being ordered. While 2 nurses poked my right arm the old fashioned way the other searched my left arm with her machine. They all blew several fragile veins but the nurse with the ultrasound ultimately won with a deep IV in my left elbow. They did a great job…I’m still not sure how she got it…as I tried so hard not to shake. She knew it was uncontrollable and made do nicely on her end. Lo and behold, my right hand also sported a small IV in it…the nurse had to press down firmly on it anytime she tried to flush it, but it worked…sort of. More waiting and violent shaking…my back, rear end and legs are so sore right now…and waiting on pain/nausea meds. The first round of pain and nausea meds is administered…and there’s no change. I knew I was way past my pain threshold and I’d been throwing up for over 4 hours now so I expected that it would take 2 shots to make a dent. We waited the mandatory 30 minutes and I didn’t say a word…just shook, threw up, and tried to keep my head from falling off. The second shot calmed most of the shaking so now I was just really, really sick and hurting. The dry heaving continued. I finally asked what they were giving me for nausea and let them know that that med does nothing and could they try Phenergan, please? They checked my files, saw that Phenergan is what they usually give me, and the doc ordered it. 20 minutes later they gave me a shot and…blessed relief!  Now it’s on to CT scans, and what do you think they did? They used that blasted baby IV in my right hand! They looked at the nice deep one in my elbow and said that it didn’t look very good. They squeezed my right hand and off we went. The vein held and the test was over, thank goodness! My head no longer felt like it was about to fall off and my right side was a dull ache.  The doc came in and surprised us all when he told us there was no sign of a blockage. This was great news, but also difficult since now we didn’t know what had caused this awful episode. He said he was going to order another shot of pain and nausea meds and then was sending me home. It was after 3am by now. We were really surprised. I was expecting them to admit me long enough to make sure I could hold down water at least. We were happy to go home, but also worried that it might start all over again.  Home we went and I was too tired to sleep so I just kept taking hot showers and drinking water 🙂 I finally fell asleep about 11am. I’m still having some pain in my right side, but manageable. Tomorrow’s my day off so I’ll take advantage of that and sleep as much as I can! Poor Terence slept for 2 or 3 hours, and got up and went to work….today his orchestra plays their UIL concert. He was buoyed by all the prayers from friends and family and came through strongly! I think he’s going to take a personal day tomorrow and get some sleep. Finally, I get to take care of him!
 
 
 
 

Just Another Day at the Hospital

I have a power port that a surgeon placed near my shoulder several years ago. It’s used for infusions of medications or when I go to the hospital/ER and have procedures and tests etc. My veins are very poor after years of steroids and other meds for Crohn’s Disease. 

I’ve had this port for 4 years and sadly it stopped working last summer. Today was ‘Removal Day’ at the hospital! Yayyyy! Yes….it took a year to get this removal scheduled. So…today’s the day! 

This is the 4th port I’ve had over the past 10ish years. The previous 3 all malfunctioned pretty quickly after being inserted and were subsequently removed. This one was supposed to be different and also supposed to be the best. So here we go! I know the drill…nothing to eat or drink starting midnight last night…

It’s finally morning and time to drive to the hospital, right??  Noooo…the procedure isn’t until noon. So, try to go back to sleep and not be thirsty. Finally, it’s time to go!  

I arrive at the check-in desk a few minutes early… but….a tech guy was replacing the computers today…only at my desk of course…..so we need to hold on for a bit. Now we’re checked in, and I’ve got my armband that shows that I am me and I’m ready to go!

We move to the waiting area to watch Bonanza with the small crowd of other patients and their families. You know who the patients are…we’re the ones trying to sneak a sip of water now and then from our purses or man-bags. Finally, the nurse is calling my name! Terence starts to go with me but is told that it’s ‘patients only’. Right then I should’ve known. As you all know from my previous emails, strange things always happen to me at hospitals! 

I need this done so I decided to go check it out and see what it’s like back there. Let’s just do this! 

The nurse asks for my name and date of birth as we head towards the procedure room. I confirmed the information as we made our way to the procedure room. It’s about 23º back there so we stopped along the way to grab a couple heated blankets and a strange looking sack-like thing with metal snaps all over the place and strings dangling from the top, middle and bottom. This turns out to be the thing I’m supposed to wear!  Now…I’ve seen and worn hundreds of hospital gowns and this did not resemble any of those. By the look on my nurse’s face, I’m pretty sure I got my head in the armhole, but he was too polite to say anything.  He verified…..again….that I was still me and that my birth date hadn’t changed in the three and a half minutes since we’d met. I raised my hand to display my awesome armband and to reassure him that I’m still me.

Back in the procedure room, the nurse told me that this was going to be a really quick and easy procedure. WooHoo! That’s just what I wanted to hear! 

I mentioned then that I’d already left messages with the office last week reminding them that I am a really hard stick and that I was hoping we could ask for someone who’s very good at getting difficult IV’s? He looked confused and told me that I wasn’t getting an IV…..I waited for the punch line but it never came. How are you going to get the port out, I asked?? He looked back at his computer and said that they would just be giving me a little shot, making an incision and pop the port right out! He seemed suspiciously happy about that too. 

Noooo…I said with a calmness I didn’t feel…..I don’t think you have the correct info for me. What usually happens is they get an IV….I go to sleep with some light anesthesia…..and wham, bam, thank you ma’am, we’re finished! See, I said showing him my wrist? I’ve got a armband and everything. I was already surreptitiously gathering my clothes as I said this so I could make a quick getaway in case he disagreed with my version of what was going to happen.  

My port is different I explained….the surgeon placed this one much deeper than they normally do because of the problems I had with the previous 3. He nodded, checking his computer and….yep, you guessed it…asked me to confirm that my name and birth date were still the same ones we had already discussed. I was beginning to worry about his constant need to verify my identity. 

Who put this port in, he asked? I told him that I couldn’t remember her name, but I had the card she gave me the day she did it 4 years back. 

Our conversation continued for a while…he told me that his records showed that a male surgeon had placed my port 4 years ago and there were many other discrepancies as well. I told him that I clearly remembered the female dr and that my dad and husband were with me then and remembered as well. Safety in numbers, right? 

As he continued reading from his notes he said that the port had been placed normally, not deeply as I’d been told, and the sutures were the normal dissolving ones and not the ones we had discussed back then that would’ve remained much longer.  At this point, we both decided I should speak with the dr who was supposed to be doing my procedure today. 

The dr came in and I explained the situation, adding that I had been mistaken for another patient twice in the past 10 years and had even been given their medication and treatment while incapacitated in the hospital. He was naturally stunned, very kind and understanding that I was concerned that everything was as it should be. He asked what I thought was supposed to happen today and I told him what I had already told the nurse. He told me that he would be happy to do the procedure the way I had described since that was what I’d been expecting. 

Unfortunately, they weren’t set up for actual anesthesia so the only thing they would be giving me was Versed. This is a drug that relaxes you and makes most people loopy and totally out of it so that although they’re awake they don’t remember. I’m very familiar with this drug and agreed to it. I also let the doc know that Versed never makes me loopy and that I would remain completely awake…..just FYI. He nodded but I could tell he didn’t really believe me.

The nurse was able to get an IV on the first try! This never happens to me and I explained that there were a lot of prayers going up right now for this very thing, but that he should feel perfectly justified in tooting his own horn about it anyway and gave him a ‘beep, beep’ myself.

They gave me the maximum amount of Versed allowed. Doc was very surprised to find that I didn’t fall asleep 🙂

I asked if he would check as he was removing the port to find out what had caused it to stop working?

He tried but said that although it was clearly not working there was no sign as to why. Hmmph! Oh well, we tried.

I asked the nurse if he could check my past procedures at this hospital and tell me if there were any notes from the dr (male or female) about my case 4 years prior? The nurse said that he couldn’t look anything up from 4 years back because they had changed systems and no longer had that information….???….sound strange to you? It definitely did to me! 

I decided that it would be in my best interests to let them finish, and leave before anything else happened! I definitely plan to find out the info I asked about…but from the safety of my own home and not while wearing the weird sack thing with the holes…I have my dignity after all!

 

 
Here we go again
Yesterday was the scope test that I have been waiting for since November. Unfortunately there were some complications and the doctor had to stop the test about an hour in. You may or may not know what a scope test is but in short it allows the doctor to take a look inside your intestinal tract. They do this under anesthesia. Thank goodness!  Since I’ve had so many abdominal surgeries I only have my small intestines left and not all of them….The doc was only able to get the scope in a little way, and because of scar tissue and narrowing he couldn’t go further without injuring me. There was no way for him to know that until he actually tried.  Of course this means that I still don’t know what the problem is. He wants me to have an MRI as soon as possible. Yes….this is the same MRI that I had scheduled for months and then my insurance canceled the day before 🙂 Something really positive happened yesterday at the hospital though…I talked to several nurses about Crohn’s and my experiences, and told them about this website. They all have friends or loved ones that are going through some of the things I have had in the past and I was able to give them some encouragement and tell them how I dealt with those symptoms and situations. It felt sooo good to be of some help!  I am looking forward to hearing from them, answering questions and listening to their stories!  
 

 

 

To be or not to be…insured

The last update I sent out in late January was all about the CT scan and MRI I would be having soon. Well….the day before the tests I got a call from my doc saying that my insurance had just canceled both tests in order to ‘review’ them first. As you know I have waited months to get those appointments so I was really bummed. I called the doctor  who wanted the tests done before the scope and told him what was happening and just asked if he would do the scope and not try to reschedule the tests. He agreed!! and set the date for the scope on Tuesday, Feb. 16!  Last Thursday I had surgery on my port….the surgeon repositioned the port deeper and sutured it to my muscle. It should not move or flip around at all now!  I’m pretty sore (apparently I had a little trouble with the breathing tube…my throat is raw and my jaw feels dislocated) but I am really happy to have gotten it done! I had a Remicade infusion yesterday…they were able to access the port with some trouble. It is deeper and right now there is a lot of swelling.  Now I am on my way out of town to a nearby hospital to have the long awaited scope test. It will take most of the day. I am looking forward to getting some answers 🙂
 

 

 

 
Lots of tests coming up! Over the next 2 weeks I’m having a CT scan * if I could invent a pleasant tasting contrast to drink for this test I would be SO rich * a special MRI, surgery to fix my port, and then the doc in Austin just might schedule that scope we’ve been waiting on. WooHoo! Looking forward to a really great 2 weeks with lots of information to show for it!
 
 
 
 

 

I woke up this morning with my joint pain almost completely gone! My arms are still bothering me, (it really hurts to lift them away from my body) but I am so thankful for this huge answer to prayer! My GI will be monitoring me to see how long this dose lasts and decide if he needs to adjust my Remicade infusions. 
 
 
 
 

 

 
What a day! This morning I finally had my appointment with pain management. For me this means that I will have one doctor who is in charge of managing my pain. This was my first experience in a pain management office, and let me tell you….there was no need for a TV in the waiting room….the patients were quite enough! Let me ‘set the stage’….
 
I was a little nervous…I wanted to make a good impression on the person who will be a big part of my life from now on. Of course I will be myself, but I am also in a lot of pain! It’s a lot to think about… 
Patients were coming and going faster than you would believe…and the stories! For some reason all the grandmothers felt obliged to congregate around my chair to discuss their hurts. One woman bemoaned the fact that she wasn’t able get a job in a local daycare because they “require an FBI background check” she stated loudly, shaking her head. An elderly gentleman waltzed in, slapped a medication bottle down on the counter and demanded more pain meds. The nurse explained several times that he had to have an appointment to get any refills. He told her that years back he received boxes of pain pills in the mail…since he didn’t need them he stockpiled it all. * Wait…it gets better * He continued, telling her that his stash had lasted him for the past 3 years but now he is finally out. I was surprised at how calm the nurses were until the 10th or 11th patient came in with the same story 🙂
 
Now I’m reeeeally nervous…every patient has been called back and I’m still waiting. It’s 45 minutes past my scheduled appointment and my doctor is visiting with every crazy person in town before seeing me! Deep breaths…I’m finally called back to meet my doctor….he’s very nice and…the best part is that he believes what I’m telling him!  * You may have chronic pain or know someone who does, so you know there’s nothing worse than going to the ER (always a last resort) and being accused of being a junkie! *
Doc discussed the medications he would like to try (taking into consideration my extensive surgeries) and came up with a good plan. Yay! One down, one more to go. An hour later I headed to my next appointment 100 miles away to meet a new GI who will perform the special scope test I need. This is the test that only 2 doctors in my state can do. I had a great appointment there as well. Doc wants to do a specific MRI and CT Scan which, luckily for me, can be done in my hometown before he orders the scope. I am feeling positive and look forward to what lies ahead!
 
 
 
 

 

I received the higher dose of Remicade today. Really hoping for some great results soon! My joint pain should be leaving any day now… 🙂
 
 
 
 
 

 

I saw my RA today….he took one look at me (didn’t even have to touch) and told me it was clear that I was having a flareup and that the arthritis I was experiencing was definitely out of control. He then performed a thorough exam, testing all joints etc..I’m just so glad I have doc’s that are committed to finding and treating the problem and not just the symptoms 🙂
Shots: Doc inserted a needle between my first and second fingers on my left hand and in my right shoulder, and injected lidocaine and a steroid. I hope to be feeling some relief from those shots tonight or tomorrow.
Inflammation: The inflammation is spreading much faster than I have ever experienced. Last night my right knee and feet became inflamed and in the past hour my left shoulder has started to swell and cause severe pain when I try to raise that arm. I am hardly able to move now without excruciating pain.
Remicade: Doc wrote a new prescription for Remicade. He increased my dosage and may also move my infusions from every 6 weeks to every 4 weeks. Right now I’m waiting to hear from my insurance as to whether they will cover it or not.
Prayers: Prayers needed specifically that I am able to get the new dose of Remicade at the hospital without having to pay thousands of dollars I don’t have 🙂
 
 
 

 

Had a really hard night. I was able to get in touch with my Rheumatologist, and I have an app tomorrow morning. I’ve asked to be on their cancellation list. It’s getting increasingly hard to get around for even the simplest tasks. Inflammation spread last night to my right knee and feet. The arthritis is now in both hands preventing me from gripping or closing my hands, right wrist, elbow, shoulder, neck, knee and joints in my feet.
Update: Doc just called to let me know there was a cancellation this morning!  Really hoping for some relief! Prayers needed.
 
 
 

 

The pain in my right arm and shoulder is much worse and the inflammation is spreading. It has spread down to my right wrist and hand. I am unable to grip anything on the right side or raise my right arm at all without excruciating pain. My left hand is very swollen at the thumb and first 2 fingers. I am unable to close my left hand. My neck is so stiff that I can’t turn my head more than an inch or 2. This afternoon the left side of my jaw started to swell and by 4:30pm I could only touch my front teeth together but not the back.  The swelling is forcing my jaw open and to the side. I hope to see my Rheumatologist tomorrow. I’ve left several messages over the weekend.
 
 

 

 
I went to the appointment my GI set for me. I was to meet another GI and discuss a special test he could do to look deep in my small intestines. Unfortunately things did not go to plan. He told me that he had received no information on me about this appointment. Since you can’t set up an appointment without the referral which includes information I can only guess that he just wasn’t able to find the info while I was there. After I explained my reason for being there he informed me that his office did not have the equipment for the test I needed and even if they did they didn’t have the specialist needed to perform it. I was at a loss for words. After waiting all week for this appointment only to find out that a lack of communication is keeping me from a test I need badly is hard to swallow. I am so lucky to have family with me who could keep a level head and discuss what to do next. I am waiting to hear back from another hospital that does in fact perform the test I need(I checked for sure)and hopefully I can get on the waiting list!
 
 
 

 

I had to go back to the hospital yesterday…another complication from Crohn’s. The abdominal pain that put me in the hospital on Nov. 13 is still going strong and kept me home in bed until yesterday. At that point, pain escalated to a level I was unable to handle so back to the hospital I went 🙁
I am still waiting on a special test…(Double Balloon Endoscopy)…it’s able to go deep within the small intestinal tract to look for scar tissue or anything that may be causing this pain. The consult for the test is Monday and I hope they will schedule the actual test right away. The scans and x-rays that were taken last night were inconclusive again. This is another opportunity to practice faith 🙂 Isaiah 41:10 says, “Be not dismayed, for I am thy God. I will strengthen thee; yea, I will help thee, yea, I will uphold thee with the right hand of my righteousness.”
 
 
 
 

 

 
It’s been a whirlwind since September! Lots of good things…and some not so fun 🙂 Remicade infusions have been going very well. No more problems when I actually get Remicade…they are injecting it at the slowest rate and all is well there.
I had a bad flare-up a few weeks ago(Nov. 13) with severe abdominal pain and fainting spells, and finally had to go to the ER. I texted my GI to let him know my status and he called the ER to give them a heads up. What a difference that made! Doctors were ready to go with pain meds and a special nurse to access my port. After CT scans and x-rays we were still no closer to finding a solution so they admitted me to the hospital where I stayed for 3 days getting fluids and having more tests.  I had a really bad blockage which was finally resolved and a mysterious pain in my lower right abdomen.  
My GI decided that I needed a special test which very few hospitals have the equipment for.  I am scheduled to have a consult on Dec. 7. and the test soon after.  As soon as I got home Crohn’s really kicked into gear and some really awful joint pain started. I was only able to move my head a inch in either direction, all joints in my hands swelled grotesquely so that I couldn’t close them at all or grip anything, I was unable to bend my wrists, arthritis settled in my right shoulder and I developed tendonitis in my upper arm. I tried to ignore the pain but after 2 days I crossed my pain threshold and once again headed to the ER. It was a short visit this time…pain and nausea meds administered IM, (injected directly into tissue instead of vein) and x-rays taken for a possible bone fracture. Good news! No fracture, but a bad case of bursitis 🙁 I needed the pain meds but as we all know they just mask the actual problem and eventually can do more harm than good. Yesterday morning my doctor ordered an extra infusion of Remicade and a steroid shot directly in the muscle with bursitis. The infusion lasted 3 and a half hours and by the end, the pain was gone from my neck, hands and wrists. WooHoo! Thirty minutes later and across town I received the steroid shot…a long needle to reach the affected area…no fun, but necessary. A few hours later the pain in my arm was noticeably less. I am looking forward to a fabulous Thanksgiving dinner tomorrow with family and friends. I hope everyone has a safe and happy Thanksgiving!

 

 

 

Remicade – My second infusion was much like the first although this time I figured out the problem. About 45 minutes into the infusion my air passage closed again, chest pain started and the infusion was stopped. As it turns out…I have always received Remicade in my vein, and from since steroids were the drug of choice before Remicade my poor veins have suffered. In the past Remicade was always administered with an IV very slowly so as not to blow the vein. Now that I have a port the nurse attempted to run the infusion at a normal pace and…disaster! From now on my infusions will be at a snail’s pace, but hopefully uneventful!
 
 
 

 

Remicade  –  I started Remicade infusions 2 weeks ago.   I get 3 in quick succession and then 1 every 8 weeks. (I have been receiving Remicade off and on since 1999 with no side effects.) Unfortunately, I had problems this last time 🙁 My airway closed and chest pain became intolerant. My team had to stop the infusion, flush my system and then try again. They started it at a slower rate and I was able to tolerate it. I developed another strange symptom about an hour later. The skin on my face felt sunburned and started peeling. By the next day is was very dry and cracked. I have read several blogs from people who are on Remicade who developed psoriasis after taking it. Hoping that is not the case! So strange since I’ve never had a problem before.

 
 
 

 

Nerve burning – Success! Wow!! The procedure was much easier than I expected. I have a great doctor which made all the difference. within a week I was pain free. I can’t wait to find out if this will last a whole 9 months!

Fibromyalgia – I had to stop the new medication after multiple complications. My eyesight was one of the top reasons. It blurred badly and I began to feel as though my eyes were dilated constantly. The sick stomach never got any better either. 
 
 
 
 
 
New Diagnosis – Doc thinks I may have fibromyalgia which may explain a lot of the pain I’ve had, and has started me on a new medication 🙂  Unfortunately the medication makes me feel like I have the flu. Chills, achy, sick stomach and that was just a 12mg! I’m now up to 50mg and it hasn’t gotten better. Hopefully I can adapt and get some improvement from it.
 The back issue – I was approved for the procedure to go in and burn my nerves! Yay! The first procedure is Aug. 8 and the next on the 12….I didn’t know it couldn’t be done all at once 🙁 Looking forward to much less back pain! 
 
 
 

 

 
I finally got some feedback on all this weird back pain. I have 2 bulging discs, some narrowing in a few places that is pinching nerves and arthritis…all from Crohn’s. While this is not the best news I am so relieved that they were able to pinpoint what is causing this pain 🙂 There’s nothing worse than to hear, “We can’t find anything wrong with you,” when you’re feeling bad! I saw a doc today who inserted 6 needles in my back and then pushed probes in until they touched nerves, then injected numbing meds. Not so much fun, but hopefully will give some relief. If it works then they will go in again, but instead of injecting meds they will burn the nerve…sounds awful to me but it’s supposed to work for up to 8-9 months. It will be loads better than taking pain meds 🙂 Never a dull moment here!   I am looking forward to getting back into the swing of things!
 
 
 

 

 

I haven’t sent an update out in a long while because I have been doing so well. Yay 🙂  Had a little setback about a week ago…sudden uncontrollable pain (one minute I was fine and the next…) so we rushed to the ER. I passed out several times from pain and luckily the worst one was as we were rolling in. Everyone there thought it was kidney stones or kidney failure etc.. but after 4 days in hospital we had nothing…so frustrating! I commented that some of the pain was coming from my lower back area and shooting out from there. I had the idea that maybe this had more to do with all the trouble I had from Prednisone (I’ve broken bones putting on my seat belt and sitting on the floor) and maybe this could even be a pinched nerve.  Because of my history with Crohn’s I saw my GI and he agreed with me about the pinched nerve. He felt that I should have an MRI and then we would go from there. I haven’t had an MRI in about 10 years and forgot how miserable that was 🙂 Longest 25 minutes ever! Anyway, had the MRI on Friday and thanks to a great friend (who happens to be our family doctor) got the results results yesterday. I have a bulging disc at my L5-S1 which could be causing me pain. Doc thinks it may be musculature as well so I’ll be seeing someone for that too.

 

 

 

Feeling a billion times better! No more fainting spells. Turns out it was the sleepy pills I was taking.  My doc suggested an all-natural substitute and I’m sleeping like a baby and feeling great 🙂

 

 

 

I’ve experienced quite a bit of pain since last Monday (Sept.8) on my first day back to work. The pain was specifically in the area where my drainage tube was pulled (right side) and hurt like the dickens whenever I stood. If no one was around I would press my hand, hard against that place and feel some relief. I was worried I might have a hernia so I saw my PCP the following Wednesday. He said that I had pulled or torn the muscle behind the incision there and that I needed to be very careful not to lift anything. Throughout the rest of the week and weekend the pain didn’t get noticeably better…it burned and was a sharp pain whenever I stood, but I was really feeling better in general everywhere else. The pain hasn’t allowed me to sleep on either side, but only on my back. I haven’t slept on either side since before surgery.

Quick note here….I have had no pain medicine since I left Cleveland. This was not by choice. I knew that I could not take a prescription from Cleveland and would be following up with my doc here. He told me that our government is basically in charge of all narcotic prescription drugs starting in October. He was only able to give me some glorified Tylenol!  Having said that let me say that I am doing very well now and don’t need the heavy stuff which I am so grateful! But it is very scary to me..Crohn’s pops up so unexpectedly and when it does you have to get the pain under control or you’re in big trouble. I hope that will not be a problem in the future 🙂

Here’s the strange bit….last night I inadvertently rolled over on my left side, and there was a moment of intense pain…so much so that I gasped but was unable to draw in any air because my stomach muscles had frozen in pain. It gradually subsided and I was able to sleep, for a short time, on that side! I woke up this morning and the pain in my right side is almost nonexistent! I can stand and not feel as though I need to put pressure against my side.  My thoughts….were my intestines twisted or kinked and suddenly I was able to straighten it out? I have read on numerous blogs of patients with my surgery getting twisted even while on liquids. I sent my surgeon a detailed email and will see what he says.

 
 
 

 

 

I made it home safely early Sunday morning. I’m doing great! I’m a little tired but as far as pain goes there is hardly any. I wish all my surgeries could have been laparoscopic 🙂 I am on full liquids and a little solids everyday. I have had no problems keeping anything down and have been able to drink all the water I need each day with no problems! I have been experimenting with different juices and fruits to make smoothies and have come up with a really delicious strawberry and peach combination!  My teaching semester begins tomorrow and I am ready to get to work 🙂

 

 

 

Recovery has been fast and furious:) I am doing really well. I can’t believe the difference between regular surgery and laparoscopic!! My final appointment with the surgeon is Friday morning. Assuming everything is great I will fly home Sunday morning. Can’t wait to get home. I have been so blessed to stay at with my friends here and consider this my home away from home. I know that recover would not be nearly so pleasant without their care:) I am enjoying amazing weather…75 is the high and 59 at night. I am looking forward to starting a wonderful new school year with great health!

 

 

 

Surgery was a great success on Thursday! Dad was able to drive in to be with me as well which was awesome! I was discharged from the hospital Saturday afternoon and am staying with some wonderful friends here in Cleveland. My post-op visit will be on Friday. If everything continues to go well I’ll be able to fly home this coming weekend! I have graduated from clear to full liquids…which means I can now have milk 🙂 Looking forward to some soup and low-fat chocolate popsicles tonight!  My hope is that this surgery will give me at least an extra 30 minutes of digestion every time I eat. For the past 10 years I have digested food within 20 minutes…now I will be able to get the good nutrients from the food as well 🙂 Very happy and excited to see how this will impact day to day life in a positive way.

 

 

 

We’re in Cleveland! About 20 minutes after I sent that last message I got the call asking if we could be in Cleveland tomorrow for appointments and surgery on Thursday! I booked our flight at 3pm and we left our house at 3:30. We touched down tonight at 10pm and are so excited to get this show on the road:)

Special thanks to…

– My Gram for keeping my 3 large collies

– My brother for teaching my students

– The rest of my family for cleaning out my fridge while I was gone

– My friends in Cleveland for welcoming me again to stay in their lovely home!

– And to all of you for your thoughts and prayers

 

 

I received a call from CC today letting me know that a nurse will call later today to set up my surgery date! WooHoo! Besides that fabulous news, the funny part was when she asked me what the best way to contact me was. Either MyChart or my cell. For those of you who don’t know..MyChart is an online site or an app that allows you to contact your doctor directly. Genius. She had heard from the other nurses of my mission to retire the fax machine and embrace the emails 🙂 I did let her know that MyChart will now text your phone with your messages so I would let her decide whether to call or email me!

 

 

 

Our insurance let us know today that we were approved last Friday for surgery. They said that they’ll contact the hospital and then mail us our approval…apparently email is out for that. They said this process could take up to 2 weeks. We are on a timeline…our insurance is changing on September 1…at which point…no surgery. I contacted the surgeons and asked that someone from their office contact my insurance to affirm that I am approved so that we can go ahead and schedule. We will see how that goes over 🙂 What a concept!…planning ahead:) I think I’ll will offer my organizational services to the Cleveland Clinic…they can pay me in surgeries 😉

 

 

 

Cleveland finally got all the paperwork turned in to our insurance this past Thursday. I am hoping to hear from them by Wednesday and have surgery scheduled by the end of the week!

 

 

 

I arrived home from Cleveland last Friday night. I hoped to have surgery while I was there. Unfortunately, the test results took longer than expected and the surgery will not be scheduled until early August. Without going into explicit detail…this surgery should really help aid digestion in general and I have high hopes. My surgeon in Cleveland is the one who suggested it after keeping a close eye on my health reports since 2006. While I was in Cleveland I had a kidney infection and it turns out that this might have been happening off and on since January. Probably the cause of much of my abdominal pain. Ever since finding the exact antibiotics needed I have felt 100% better with hardly any abdominal pain!  More info when my surgery date is set 🙂

 

 

 

Still no word back from the surgeon’s office. I just found out that the document that should have been sent last Thursday has been sitting on a desk waiting for my signature!  Wow….it’s really hard to have faith. Sitting here in my nice little room…little grandma recliner.. my lap is covered in post-it notes with different numbers, names etc. The amount of phone calls I’ve made today is crazy! The sad part is that I haven’t spoken to my surgeons since last Wednesday. This is all office work. Still waiting for them to schedule me and trying to get this one little piece of info faxed. I learned how to send a fax today….apparently the doctors in the US are still stuck in 1987 and haven’t learned how to email documents. I found a great app that allows you to email a fax document….sounds repetitive yes? Nevertheless, it does the job. But no one in the office seemed interested although I assured them it had a 30 day free trial! Finally the fax machine was discovered under a rug in the closet…the number was given…fax received after a chorus of unpleasant beeps and squeals. I called my surgeons office to make sure they received it…only to be told that the person who receives faxes was gone for the day. After thinking about that for a few minutes I called back and asked the nurse if she could walk to that fax machine and receive it but, alas, I was told that the fax machine’s receiver’s assistant had already left for the day as well. I was assured that it would be received tomorrow though…

 

 

 
 

I was released today from the hospital! It is my birthday and my nurses made me birthday cards 🙂  I am back at the home I am staying at…still waiting on my insurance to go through. I know that I have everything in order and the surgeon is ready to set the date. Hopefully they will try to speed the insurance along by having the surgeon note that it is urgent. I hope to hear something tomorrow.

  

 

 
 
No surgeon’s visit yet. My doctor says it is a kidney infection and they are waiting on cultures. I am waiting to hear back from them to see if surgery is still possible. By this I mean that I would be willing to wait here rather than go back home depending on how long. Hopefully I will know something soon 🙂
 

 

 

 
 
I finally saw my team of doctors today at 12:30pm. They said I will be staying until Sunday. They want me to take IV antibiotics and pain meds. I will get another visit from surgeons later today. Fingers crossed that they still feel positive 🙂 
On another note…I made a formal complaint against the nurse and doctor who caused me so much needless suffering. I will not allow this kind of behavior to continue and hurt someone who cannot speak for themselves.  Unfortunately for this doctor and nurse I am far from helpless. 
 
 

 

 
 
This next bit is not very nice. It’s the truth and I felt I needed to post it so I am giving a heads up now…
Thursday, July 10 by 3pm I was at my pain limit so I decided to go to a nearby urgent care. The doctor took a urine sample and came back with the news that I did indeed have a UTI but she felt it might be worse…possibly a kidney infection. Because of my history with Crohn’s she did not feel comfortable treating me in her office and recommended that I go to the ER. I arrived at the ER at 6pm. I waited only a short time and was brought back to a room. After about 45 minutes I saw the doctor and explained what was going on. He decided to draw blood, give me a non-narcotic pain med called
Toradol and check to see if I had something worse than an infection.  I told him that I had a Power Port in my right chest that I would like him to use since my veins blow quite easily.  Several nurses attempted to access my port but were unable to get the needle in properly. I was told this was a normal occurrence and not to worry about it. It is now 8pm and I am in immense pain. Another nurse arrived to get an IV…amazingly he got it on the 2nd stick! He drew 3 vials of blood, gave me antibiotics and the Toradol. The doctor decided to perform an ultrasound at my bedside(assisted by the nurse). The doctor commented several times on my history of Crohn’s even praising me for being such a strong and brave patient. He was a little brusque in his mannerisms but I have learned that is common among doctors. He seemed highly intelligent and strongly motivated to get to the bottom of my cause of pain. He did not want to do a CT scan because he felt that I had had too many in my past. I agreed with his decision. By 9pm my pain was still at an 8.5 and I asked the nurse to give me something more for pain. After about 30 minutes he came back with a pain pill(Percocet). I told him I was willing to try this but felt that my pain level was still too high. I said that in my experience with pain, after it gets to a certain level it is hard to get it manageable again. I said that it had been several hours since I had arrived and the pain had only gotten worse. He promised to speak with the doctor and then said, “This ER does not administer any IV pain meds.” I was taken aback. I had not specifically asked for IV drugs and also…what hospital doesn’t give IV pain meds??  By this time I was crying quietly. I asked, “Is this a state-wide mandate? I have not asked for IV pain medication and actually prefer non-narcotics. I would, however, like to address my pain issue immediately.”  The nurse said he would talk with the doctor and come right back. Within 20 minutes he came in and said, “You are being discharged.” My mouth dropped open. I was stunned. I looked at the nurse and said, “I can’t go home with my pain level so high(still 8.5).” He said, “There is nothing more we will do…you need to leave.” And then he left the room. I didn’t even know what to say. Where was the doctor who so recently was determined to find my cause of pain? I started to cry. I was past my pain threshold and I just fell apart. The nurse returned a few minutes later and said, “I am going to read you your discharge instructions.” I said, “I can’t leave the hospital…what am I supposed to do? I can’t continue through the night like this.”  He cut me off and said, “You are discharged, you have to leave.” Several times I tried to ask questions and each time the nurse cut me off and continued to read my discharge instructions. I said that I wanted to speak with someone else. He said, “There is no one else.”  I told him that I wanted to speak with the doctor. He said, “The doctor is with another patient.” I told him that I would wait. He looked at me and said “The doctor isn’t at the ER anymore.”  I stared at him and said “You just said that he was with a patient!”  He said, “You’re discharged, if you are still in pain then you can check back in to this ER after you are discharged”.  I told him I wanted to speak with the doctor immediately. He said, “No”  at that point I asked the nurse to leave the room. He responded that I needed to leave. I sobbed out, “I don’t want to talk to you anymore.”  He started to say something else and I said, “Please leave my room.”  He left. A while later the doctor came into my room and said, “What do you want? I’m not going to give you any narcotics.”  I said, “I never asked for any narcotics. I am in no state to go home. My pain level is too high. This needs to be addressed before I leave.”  He said, “You have to leave or I will admit you to the hospital and they’re not going to give you anything for pain either.”  During this discussion I had been sobbing out loud. I told the doctor that I would rather not be admitted. I just wanted to get my pain down to a manageable level so that I could go home. He looked at me and said, “Fine, I’m admitting you.”  I was just in shock at such a turn of events in what seemed such a short time. I did the only thing left to me and was admitted to the hospital.  The nurse came in scowling. He unhooked all my wires and tubes. He jerked my IV line and I gasped. He said, “Oh, I didn’t see that.” He shoved the hospital bed roughly against the wall and my right leg banged against it. He said, “You better pull your legs and arms in if you don’t want to get hurt.” 
I was still sobbing as I tried to huddle in the middle of the bed. He wheeled me through skywalks and up elevators, down halls and finally to my new room. I was so relieved when he left me alone.

 

 
 

 

Today appointments were really long and some of them very painful. The last 3 appointments were with the surgeons and they didn’t go so well. They started saying that I was supposed to have done a 3 month doctor monitored diet required by our insurance. I said that there had been no mention of this from my insurance but they had no explanation as to why I was never told this. I told them that in September my insurance will change. The new insurance will require a 6 month doctor monitored diet and almost $10,000 up front. They had no answer for this and I left the offices so discouraged. As I left the hospital I pulled over in a small lot, prayed, and called my insurance provider 🙂 I spoke with a wonderful lady who told me that they did not require this 3 month plan and that I have already met all requirements. If the surgeon will contact my insurance and tell them that he feels this surgery is needed (which he does) I can be approved now. I have left messages with all the doctors and will wait to see what they have to say tomorrow. Prayers are still desperately needed for tomorrow’s decision. My hope is that I will be able to proceed with surgery either late this week or early next. 

 
 
 
 

I’m are on my way to the Cleveland Clinic! I’m driving and staying with a lovely couple through Hospitality Housing. Looking forward to the trip and the surgery!

 

 

 

 

Pain moved to my right side and I hit my limit. Heading back to the ER today. It’s about 4pm. The waiting room is packed and there is a 3 hour wait. Many people are not having an emergency but are using the ER as a doctor’s office. I was given pain meds and an ultrasound. They couldn’t find anything. They sent me home after several hours.

 

 

 

 

I started having pain on my left side this past Sunday and it finally became unbearable yesterday. Chest pain on my left side started in full force too. I made it to the ER by 5pm. Thank goodness for my new power port! They were able to use it for all my labs, pain meds and CT scan:) Yay! No more blown veins;) I got to drink a huge cup of contrast (icky) for the CT scan and to help me out Dad brought me some Jolly Ranchers 🙂 I was able to drink the whole cup with a little help from a fruit punch candy 😉 Anyway…They found a kidney stone, which was still in my kidney, and they said shouldn’t be causing pain, a pocket of mystery fluid or scar tissue in my left lower abdomen and my heart was making some weird fluttering feelings. They took an EKG four times and every time it was unreadable. Still not sure what that means 🙂 After 4 shots of pain and nausea meds they sent me home with no clear answer. I was pretty miserable last night and couldn’t sleep at all so I got on MyChart and emailed my PCP to let him know what was going on. He called me back early this morning to tell me he had looked through all the info and test results from the ER and said that the tests they took showed a UTI. I guess they missed it. He called in antibiotics and suggested several things I could drink at home that would make me feel more comfortable. I will follow up with my GI later today or tomorrow. I don’t know what’s going on but I do know that I’m happy to be home 😉

 

 

 

I went to my appointment today…I was supposed to meet with the surgeon and discuss the possibility of putting in a port. I arrived, the nurse took my vitals and then asked me about my medical background. After going through that whole rigmarole I finally landed in the  office. The doctor came into the room and I told her why I was there. She looked very confused and said, ”So, you’re not here for surgery for Crohn’s?”  I was pretty surprised and told her again why I was there.  She told me that someone had made a mistake. Apparently when my doc’s office called, the person who does the scheduling heard the word Crohn’s and stopped listening after that and made my appointment for abdominal surgery! I reassured her that I was doing just fine in that area…I just wanted a port! She was very accommodating and proceeded to get me to the right people. I told them that I had prepped for surgery at home in the off chance that there might be an opening today and there actually was!  Since I had already prepped they set my surgery for 12:30 p.m. that day.

The next step was getting an IV. The first stick blew my vein..literally blew up all over me and my warm blanket. The nurses were very nice…I’m just such a hard stick. They wanted to get me a new, clean blanket but I told them I thought it would be fun if they would wheel me down the hall while I hollered…“I’m not dead yet! I’m feeling much better!” Maybe next time 🙂 Thankfully one of the nurses  got it on the second stick!  The surgery was successful and I left shortly after eating some cheese and crackers, proving that I could hold down solids.   All in all, a good day.

 

 

I met with my new RA today. I like him. He gets right to the point 🙂 We discussed me getting a port and he set up an appointment for Monday morning, June 9 with general surgery.

 

 

I am having excruciating pain today in both arms. I guess all the blown veins from yesterday are taking their toll. I am icing from hand to shoulder as often as I can. Taking pain meds and Phenergan all day to try to cope.

 

 

 

I was able to get my 2nd infusion of Remicade today, but not without much difficulty. Ever since taking massive amounts of Prednisone several years ago I have had a really hard time getting an IV. Today was no exception! I have a great team of nurses who do their best to make each infusion as easy as possible. They will normally stop after missing once or twice. Knowing how much better I feel after getting Remicade I asked them to continue until they got it. After 8 hours…11 sticks in my right arm…13 in my left and two visits from an awesome ER nurse..they finally got an IV that didn’t blow! (I am currently propped on the couch with both arms on ice:)  You might be wondering why this had to be so difficult. My doctor (who is leaving my hospital at the end of the month) feels that I am at high risk for with a port. She knows that I have had 4 ports in the past when I received Remicade and had no problems then. We had a ‘strong’ discussion today…you would have been proud of me..I stayed focused and not stressed 🙂 and she has decided to put in an order for the port and let my new doctor (whoever that will be) decide. Please say a little prayer that the newbie will be pro port! I am looking forward to waking up tomorrow feeling so much better!!

 

 

 

 

I am looking forward to my 2nd infusion of Remicade on Tuesday, May 27. I have experienced great results as far as joint pain ever since my first treatment in early April. For me, Remicade really is like a miracle drug 🙂  My doctor who is in charge of ordering Remicade for me is leaving the hospital so I am anxious to find out who is replacing her. I hope to find out this week. For those who have been asking for more details on how I’m feeling…I have gone from taking daily pain medication to taking it a few times a week. I know that it will only get better and am looking forward to that! 

 

 

 

 

I had my first appointment with my new PCP. He is taking me off Zoloft after I told him I was getting hot all the time but my skin was cold and clammy. He has started me on Cymbalta 30mg. It should help with mood and pain.

 

 

 

 

I woke up this morning feeling different. Not great by any means but I didn’t feel like I needed to take pain meds right away as I usually do. My joints did not feel like they were grinding bone on bone either which was so surprising. I guess I have gotten used to that pain and until it was gone did I realize how much it distracted me! The feeling persisted throughout the day and I didn’t have to take any pains meds. I am very optimistic that this will only get better 🙂 Right now, I am just enjoying the good feeling!

 

 

 

 

I got my first infusion of Remicade today. I arrived at 10:30am. After 10 sticks the nurse was finally able to get an IV. My doc wanted to try to do the infusion without having a port put in but if today was any indication of what is to come I vote for the port! The nurse spent 2 hours digging for a vein. This is normal in my history and will only get worse.

One nurse asked if I wanted her to quit…I told her that I wasn’t leaving until I got my injection even if it took all day. I told her that I normally had a ‘2 stick’ policy but in this instance she could try as many times as she wanted.  Although having a port is risky with a drug like Remicade I feel that my need outweighs the risk. We will see what she decides. (the nurses are on my side:) The infusion was smooth, no side effects. I wasn’t expecting any but you never know.

 

 

 

 

My rheumatologist called today to tell me that I have been approved for Remicade! My appointment is Tuesday, April 1 at 10:30am 🙂 I still have no idea how much our insurance is going to cover but I am so excited! I can hardly wait until Tuesday. And yes, I know that Tuesday is April Fool’s Day….I already mentioned that to the nurse  🙂 At 10:30am on Tuesday I will be sitting in ‘chair 3’ for 180 minutes and enjoying every second of it.

 

 

 

 

My GI called me today to say that he had the results from the biopsy that was taken in ’96. He said it looks like Indeterminate Colitis, not Crohn’s. This is good news!

 

 

 

 

I had a very good and informative appointment today with my GI. He is investigating the very first biopsy that was done back in ’96 at my first surgery. He hopes it might shed some light on of some of the symptoms I have now.  He happens to live next door to my new PCP and they have been discussing my situation 🙂  Obviously something needs to be done…my symptoms are intense chest pain(costochondritis), pain in all joints(rheumatoid arthritis), and severe muscle pain(fibromyalgia). I have every confidence that my GI will find what is best for me, pursue it and make it happen.

 

 

 

 

I am still waiting for my insurance to approve Remicade. My doctor called today to let me know that she had called my insurance again to check on the progress and they said it was still pending.  Feeling frustrated, I called our insurance and after many transfers was finally told that our insurance was waiting for my doctors ‘pre-authorization request.’

I called my doctor’s office and sat there on hold for 23 minutes until an automated message told me that ‘the office is now closed’ 🙂 So, I baked cookies, ate them and felt better 🙂 My GI called me and asked me to come in to his office tomorrow to discuss a possible surgery. My appointment is today at 3pm.  If I need to have a surgery I will have to wait to get Remicade. It is not a drug you can take right before or right after a surgery. 

 

 

 

 

Well, it’s been a difficult month. I kept thinking that I’d just hit a rough patch and that I would bounce right back, but that hasn’t happened yet…fingers still crossed 🙂 I dislike dwelling on the negative so I’ll keep my sad details to a minimum and then get right to my own opinions  🙂 

Sad details: Abdominal pain is keeping me from being able to stand up straight, joint pain makes it impossible to bend any which way and chest pain is forcing me to walk short distances at a time to keep from having what feels like an asthma attack.  So, there it is.

My opinions: All of this has been going on separately for the past several years but now when it is combined I am finding it much more difficult to control. 

A few weeks ago I doubled my daily pain medication and this past weekend decided enough was enough. I contacted my surgeon in Cleveland to let him know that I had reached my breaking point. I asked him to find someone that has specifically studied the effects of long-term, high doses of steroids, their debilitating effects on Crohn’s patients and to get back to me ASAP. To my delight he contacted me within 48 hours…unfortunately it was with the news that there was no such person. Apparently (and this is my opinion) there isn’t any money in that particular field so there is no specialist. He did have some interesting ideas about my situation, which could involve another surgery. Don’t ask me what surgery because I’m still waiting to hear 🙂 

Steroids: I don’t remember sharing my opinions on steroids so I thought I would do that now. Perhaps it will give you a little more insight to my current state. Crohn’s patients are missing at least 1 important chemical that makes up our immune system. That is a very short and incomplete way of describing it, but it’ll do. I took 100mg of Prednisone everyday for 2 years. 40mg by mouth and 60mg I injected as ordered by my doctor. Many of my symptoms can be traced back to steroid use. Although no one can tell me definitively that steroids are a main cause of my problems, I find it interesting that so many of the symptoms I have can be found in the novel that is the list of side effects for Prednisone. Of course, having Crohn’s doesn’t help either 🙂 Believe it or not, the treatment for my chest pain and joint pain is still steroids. To be clear…I am not and have not taken steroids in many years….I have lost count of the doctors that I have seen over the past years. They all ran multitudes of tests and then cheerfully told me that the solution was simple…steroids. When I calmly explained that this was not an option I received mixed reactions. Some were angry…as if I was questioning their judgment, which I guess I was….most of them listened to my reasons for not wanting steroids and gave me I know what you mean but this is what I’m supposed to say look and then charged me $150 🙂 Bottom line is if I want something done right I’ve got to do it myself. I will continue to look for a specialist that can provide answers but in the meantime I will work to become that specialist  🙂

 

 

 

 

I just spoke with financial assistance for Humira and I was denied again. This was the final denial so I will be pursuing Remicade now. Hopefully that won’t take as long as this has 🙂

 

 

 

 

I had an appointment with my rheumatologist this past Monday. It was January 24, 2013 when I saw her last. At that time she diagnosed me with rheumatoid arthritis and prescribed Humira for me. Now, a year later, I have still not gotten the medication. I let her know that I didn’t qualify for any assistance because I have insurance. She was at a loss as to why this was happening. Her office has been sending requests every week since last year. She seemed very concerned and promised to double up on the requests. After a very long 2 hours of poking and prodding she told me that I have Fibromyalgia as well. This accounts for the pain I have in my muscles. Because of the difficulty in getting Humira we discussed the possibility of ordering Remicade. I have responded to it so positively in the past so it is definitely a possibility. A good friend (also a lawyer) offered to look into my case and try to get the drug company to reverse their decision. I feel so blessed to have a friend that would do that for me! I’ll keep you all posted on that. In the meantime, I am taking it one day at a time…and thankful to have each day!

 

 

 

 

I still have not received Humira and it doesn’t look like I will in the near future. On January 27 the original prescription my doctor ordered will have to be renewed because it will have been a year since she wrote it. This means I will have to begin the whole process over again. Most of you know that I had a very positive reaction to Remicade back in 2001. It requires a three-hour infusion and since I no longer have very good veins I have been avoiding that. I even had several ports put in for Remicade in the past and they all malfunctioned before the first use. Recently I heard that there have been some huge improvements with ports so I am discussing that as an option with my doctor. There may be a chance I could get Remicade much faster than Humira because I would have to get it in the hospital. Please say a prayer that this will be the case and my insurance will cover it!I hope to have some great news very soon to share with you all.

 

 

 

 

I’m still alive and kicking! Looks like I just have a really bad case of bronchitis as well as inflammatory asthma! I’ve never heard of that one before 🙂

I was playing a final Holiday symphony performance on Sunday and I had a coughing fit right in the middle of Hark! the Herald Angels Sing….I had about 4 measures to get up out of my chair and run off stage before Silent Night took over…. 🙂  I’ve decided to camp out on the couch and watch old re-runs of Hogan’s Hero’s until I can walk around without having a coughing spell.  Still waiting on the Humira. I did talk to a drug rep today and he was encouraging 🙂  I am still counting on getting it before Christmas. Now that would be a great Christmas gift 🙂

 

 

 

I haven’t sent out an update because there has been nothing to update. I am still waiting on my insurance to pay for Humira so I can begin feeling better. It is $5000 per shot every 2 months. My insurance will pay $3000. We are in the process of applying for financial assistance for the remaining $2000. They told me I would initially be denied but that I should appeal that. So now its just paperwork. Two weeks ago I had a viral infection and this past Monday night I felt that it was coming back. I saw one of the after-hours docs and he affirmed that I had Bronchitis. He gave me a heavy cough medicine and an antibiotic. Yesterday around 1pm my temperature suddenly jumped to 102.8. I called my surgeon and he advised me to go to the ER to get fluids. I was rapidly becoming dehydrated. After waiting for 4 hours in the waiting room I was finally taken back and given IV fluids and paid meds/nausea meds. They sent me home at 11pm. My fever is holding at 100 now.

 

 

 

 

I have lots of info so I’ll get right to it….

Humira – I am still waiting for it…insurance, money blah, blah, blah.

Right Lung – Test results came back normal….I get to keep my lung!  Yay!

Left Side Chest Pain – Costochondritis is the culprit. I saw a cardiologist yesterday and he still wants to run some tests…specifically a stress test. Like I’m not already stressed 🙂 The one he’s going to do is 5 hours long!…3 hours one day and 2 hours the next. Basically they have to get an IV (2 hours:) then inject some stuff…wait an hour and take X-rays for 20 minutes. It’s scheduled for my day off next Tuesday.

New Ridiculous Problem – I fell today…I was pushing something out of the way with my foot and the other one slipped and I landed flat on my back. No small embarrassment since I was on the deck behind my house and am positive my neighbors (retired music teachers) were all watching. There was lots of popping, and cracking sounds and my 3 collies were extremely worried. I felt like a total dufus! I bruised myself pretty good and noticed sharp pains at the top right side of my breastbone. I tried icing and lying down for a couple hours but finally went to see my doctor. X-rays showed that my ribs look really ‘funky’ (doctor jargon).  But after I asked them to look at X-rays from last year it turns out that they already looked like that 🙂 Doc said I tore the muscle on top or around the bone. I get to ice it and try not to move or breathe a whole lot. “Try not to aggravate it” she said as she was poking and prodding the sore spot.  

I said, “I wouldn’t if she wouldn’t!”  

 

 

 

 

My insurance has approved Humira but I haven’t actually gotten it yet. Apparently they want me to pay an exorbitant amount as a copay first. There are some options so I’ll be pursuing those right away. Until I hear back from them they will not send it.  Anyway I’m feeling a little better. I was able to go to work today (half day) and it was great to see my students again 🙂 I will see a cardiologist tomorrow as a follow up from the ER. I am sure everything is fine 🙂

 

 

 

 

Good news! My insurance has finally approved the Humira shot I have been waiting for! I hope to get it this week:) Thanks for all the pep talks and prayers…they have been a big help!  Also, it seems as though the chest pain may be caused by Costrochondritis…an inflammation of the cartilage that connects each rib to the sternum. Humira may help with this as well. I’ll let you all know how the treatment goes.

 

 

 

 

I did not get to see my regular PCP. I saw one of his associates Dr. I have never had a good experience with him but felt that I needed to see someone ASAP. 

He seemed to have an agenda…he spoke sharply right from the get-go saying, “This pain has nothing to do with your heart.” He repeated himself several times. Finally I said “Okay” a little sharply myself.   A few minutes later he brought it up again until I stopped him and said, “I think there has been a miscommunication. I never said anything about this being my heart. The only reason I am seeing a cardiologist is because the ER told me to.”  Instead of helping this seemed to be an invitation to argue about it. After listening to him for a while I cut in and repeated what I had said earlier. The message finally got to him I guess. He asked me to sit on the exam table and pushed on my chest asking if that hurt.  I said yes…he kept pushing in the same spot, I said yes again…still pushing, “Yes!” I shouted and he finally quit. I should have made him stop after the first push but it didn’t occur to me that he would continue pushing in the same spot. That is what crazy people do…the same thing again and again expecting a different reaction. This really brought back some bad memories of past appointments. He diagnosed me with Costrochondritis (inflammation in the cartilage between the ribs and breastbone). His solution was Prednisone. I adamantly refused and explained why. He wouldn’t (or couldn’t) understand my reasoning. He said there was nothing else they could do. I asked about hospitalization in the meantime to help control my pain. He said there was no reason for that. There weren’t any other tests they would run anyway and I just needed to accept that. I said that this wasn’t a solution and that I thought the hospital was there to help when you didn’t know what was wrong. I felt that I would have to go back to the ER soon and didn’t want to keep doing that. His answer was that I could take the Prednisone. I left after that.  I haven’t given up but I am very frustrated and emotional right now. Stress levels are high and I am focusing on controlling pain.

 

 

 

 

I checked back into the ER  around 5:00 a.m. and have just had blood work and the first round of pain meds. 

They will be running a VQ scan. A VQ scan involves me inhaling a small amount of radioactive material while a camera scans my lungs. Then they will inject a small amount of radioactive isotopes to see how the lungs are functioning. 

 

 

 

 

I am back home now. Test came back clear on heart and lungs. They know that something is wrong but can’t put a finger on it. I will  still be seeing a cardiologist and lung doctor tomorrow. It’s good to be home 🙂 I am sleeping a lot right now. The heavy pain meds they have me on make it a little difficult to concentrate but I feel much better.

 

 

 

 

I spent yesterday evening the ER. I had severe chest pain on my left side and sharp pains in my left shoulder, arm and down to my left knee. I wasn’t able to control the pain at home so to the hospital I went!

Doctors checked to make sure I didn’t have a heart attack, stroke or something else ridiculous. Of course they found nothing.

Blood work came back okay as well as the chest x-rays. I was still waiting to hear results on the CT scan I had Tuesday on my right lung…the ER doc was able to pull those files and look at them. He said he saw a nodule but it was probably benign….I’d feel a lot better hearing exactly what ‘it’ was.  I’m sure I’ll find out by Monday. After 2 shots of pain meds they sent me home. They told me to see a cardiologist on Monday to take a closer look.  Unfortunately pain levels are rising again. If I can’t keep them down we will go back to the ER and have them admit me until we can see the cardiologist. I’ll let you know if that is the case.

 

 

 

 

I had my CT scan Tuesday. My attending nurse got an IV and finished the test in 18 minutes! This is nothing short of a miracle since I have such poor veins. She is one of the kindest people I have met (not just in a hospital).   Anyway, I am waiting for the results. I had to stay home Monday and today with abdominal and chest pain.  I’ll let you all know as soon as I hear the good news! 

 

 

 

 

Good news! I finally have a CT Scan scheduled for Tuesday, October 1. They will be looking at the shadow and nodule they saw in my right lung several weeks ago. I am sure that all is well and look forward to that confirmation 🙂

 

 

 

 

I am still waiting for word from Cleveland. I have been in contact with them, of course, and am waiting a decision. I am still waiting for the new medication Humira…turns out my insurance has been dragging their feet for the past month..not surprising  🙂

A little setback came this morning. Results came back from my latest chest x-ray. My doctor saw a shadow and nodule in my right lung. She wants to take a CT scan to get a better look. Possibly this will explain the chest pain I have had since Feb. 2012. I will let you all know those results as soon as I get them. In the meantime your prayers are appreciated.

 

 

 

 

 

No news yet 🙂 My surgeon in Cleveland is out of the office until next week. He will review my files and hopefully get back to me Wednesday.

 

 

 

 

I have been experiencing severe abdominal pain for the past several weeks. My surgeon here  ordered a CT scan and I finally got the results today.  He found a collection of fluid in my lower right abdomen. This was actually there before my surgery in Cleveland back in April. I have no idea why it is still there or  what it is for that matter.  Because of liability issues my local surgeon will not see me for this but will notify my surgeon in Cleveland and send all information to them.  In the meantime I am taking pain meds, waiting on news from Cleveland and looking forward to starting the fall semester 🙂

 

 

 

 

Thanks for all the prayers this past year!  I really appreciate it  🙂

Here is a quick update….

Today is Day 4 of some really bad abdominal pain.  I thought it would pass but so far it hasn’t.  I saw my surgeon here  yesterday and he is concerned that I might have developed a fistula since my last surgery. While removing scar tissue can be very beneficial, you can also run the risk of fistulas and other things. I am hoping it is something simple 🙂 I have a CT Scan scheduled for Thursday, August 15. Please say a prayer for me! Thanks and love to you all!

 

 

 

 

I have finished the round of antibiotics and it looks as the infection is finally gone. Because it is so strong sit killed the good bacteria that my body needed and as a consequence I developed thrush in my mouth. That is almost gone now as well. I am finished with the wound vac…the incision is pretty small now and I am just waiting on the tunnel to close up which was where the infection was. This week I are playing for an opera festival here in town and then the first week of July I’ll go to Colorado 🙂 Can’t wait!

 

 

 

 

I had a setback today at my appointment with my surgeon. My incision was healing on the top but not below the skin level. He reopened my incision today, drained it, packed it then cauterized it. Needless to say it was not a pleasant visit for me 🙂 It needed to be done and I know I will begin feeling better soon.  Already I feel as though a great pressure has been released and it’s a little easier to move around 🙂

 

 

 

 

I just got a call from my hospital. Results came back from the urine test they took the other night in the ER. The antibiotic I have been on has not been working because it is resistant to the infection I have. They called to tell me they are calling in a new antibiotic that will actually help. I hope to feel some good results soon! Last night pain reached a new high. I could barely walk just long enough to get to the bathroom.

 

 

 

 

My doctor took a culture of my incision to determine whether or not I still have staph. The culture came back positive for MRSA (Methicillin-resistant Staphylococcus aureus). There is 1 antibiotic for my particular strain of staph and it’s $2600! My insurance will pay $2000 and while that is wonderful it still leaves us with a big chunk 🙂

At this point I want to stop and make it clear that I am not asking for money 🙂

Actually, I am asking for any ideas you might have. Sometimes companies will help out by sending samples etc. If you have any ideas for me in this area please let me know. This is the 4th antibiotic I will be taking and each one was supposed to be ‘the one’. The past 3 were not near as expensive like this one but as we are paying 3 separate hospitals for ER and hospital stays every little bit counts 🙂  We have wonderful support from our families and we will get through this with flying colors but I have to wonder whether this is the last one. Most importantly…please continue your prayers! They give us strength and determination!

 

 

 

 

I’m getting a little better every day. It is slow and you know how I am….I just hate sitting still and not doing some project 🙂 But I believe I am healing well and as long as the infection doesn’t come back I will be OK. My doctors were worried for a while since I got a bad strain of staph infection right after surgery. It took them 3 weeks and 3 antibiotics between Cleveland and here to figure out which kind of staph I had (there are 11 strains) and which antibiotic would actually help. I have since finished the correct round of antibiotics and will be having labs taken to see if all is as it should be.

I finally got the Wound Vac and am having a great time carting it around with me. I have been having more fun coming up with the craziest explanations as to what it is for people who don’t know 🙂  For instance…I might have pretended it was some sort of artificial heart or some other crazy government experiment! After all, if you can’t find something about yourself to make fun of then you’re just not really having the most fun 🙂

All kidding aside, I want to thank our dear friends for their loving support and prayers. I am just full to overflowing with the kindness i have experienced these past few months!

I am looking forward to a wonderful week…one of my dearest childhood friends is in town visiting her family (she lives in Scotland) and is coming to visit me tomorrow and my older sister is coming Wednesday night for a long overdue Star Trek marathon! If that isn’t enough,  I arm gearing up for this weekend….my cousin is racing in the Indy 500 this Sunday. I just can’t wait to watch him win!

 

 

 

 

 

I woke up needing lots of ‘hugs’. Unfortunately my surgery did not go as originally planned. I had two surgeons working together because of the level of difficulty this procedure called for involving Crohn’s Disease. They both worked for the first 3 hours removing adhesions. I had so much scar tissue from previous surgery that this needed to be done before they could even begin. Scar tissue around my ovaries was so extensive that the surgeons made the difficult decision to remove both of them rather than just the one. Both surgeons felt that if they left one then they would be performing this same surgery again in a few short years.   As difficult as this news was to take I am handling it.  I am blessed. I was out of bed walking later the same evening of my surgery. Doctors and staff were amazed that I was recouping so quickly. By Friday afternoon I was discharged from the hospital because of how quickly my body was resuming daily function. Doctors could not explain it. This is wonderful news because I originally thought I would be in the hospital until at least Sunday or Monday.   Right now I am recuperating with family friends who live in the oldest home in Cleveland, Ohio.  I look forward to going home very soon!

 

 

 

There was inflammation and a sudden surge of pain that developed over the upper half of the incision starting Friday night. I’m not running a fever, but the pain became unmanageable Saturday evening and I have checked into the ER. They took a CT scan which was mostly clear, showing some possible infection. Naturally no one wants to do anything. 🙂 My plan is to see my local surgeon tomorrow (Monday) and hopefully he will agree to take care of this for me. 

 

 

 

 

My surgeon is in Puerto Rico today (he is there half of the week) but I will be seen by another doctor and assess the damage. More details later….

 

 

 

 

Here is a quick update on my road trip to the Cleveland Clinic this week….

I saw the surgeon today. The appointment went very well. He was very confident and reassuring. It’s his opinion that I should have surgery as soon as possible. This will be a very tricky surgery and is not without risk, however, we all feel that it is the best option to alleviate the pain. I have dealt with this pain for over a year now and am ready for it to be over! Both surgeons will be performing this procedure together because of my history with Crohn’s and complications during surgery. They are booked through April with surgeries for cancer patients (who obviously come first) so May is the first chance they will have to work together on this. I am disappointed that I can’t have it now since I’m already here but there is obviously a reason…I just don’t know what yet. 🙂  I couldn’t have asked for a better answer than this. I was very worried they wouldn’t want to try because of the risk and would just tell me what every other doctor has….to stay home and take pain meds the rest of my life…we all know that’s not going to happen. 🙂  I plan to fly to Cleveland on May 5 for surgery the following day. Both doctors felt flying would be the best for me so I’ll be looking for some good plane tickets. They are projecting that I will be here at least 2 weeks to recoup before going home. They say there are many things to monitor and don’t want me leaving until they are sure everything is fine. I thank you all for the continued prayers and concern. Please continue to pray for our family. This has been a difficult year already and every surgery I have had (at least 15) there have been huge complications. The strain is always worse for those who have to wait and be patient to see how I come out of it. God always shows his greatness through my recoveries! I am not worried at all…in fact I am very excited! You would be too if you saw an end in sight from lots of pain 🙂  I am especially happy that we are coming home tomorrow….have a little spring break and get back to work and finish this semester on a high note. I look forward to seeing you all next week!

 

 

 

 

I was discharged last night from the hospital last night around 5:00 p.m. It was the same pain from last year around in February that put me in the hospital last year. I have a follow up appointment today at 2:00 p.m., which should determine whether or not I will have surgery. 

 

 

 

 

I went to a urology appointment that the hospital scheduled in my discharge papers. After checking in, the doctor told me that I did not  have an appointment. As far as I know the appointment was for the lady whose prescriptions I was given.  My chest pain continued for 5 days. I spoke with my GI and he checked my hospital records. There was no mention of chest pain.  I was told that I would receive a call within the next couple of days.  No call.  Today I went to the hospital and made a complaint to Patient Relations. 

 

 

 

 

I went to my pharmacy. I was told there were no prescriptions for me. I later found out that my prescriptions had been sent to the wrong pharmacy. Because of this mistake I did not receive medication until Sunday evening.

 

 

 

 

The new doctor told me that he thought this might be related to my Crohn’s disease and asked what medications I was allergic to. I told him Imuran, Asacol, Methotrexate and Cipro. I told him I wasn’t having problems digesting and didn’t think this was Crohn’s related. He recommended treating my pain with steroids.  I told him that I could not take steroids because of the devastating effect they had on me several years prior. He left and came back to tell me that he had ordered Asacol to treat me for Crohn’s. I was very worried and confused by this.  I reminded him again that I was allergic to this drug. He said he would stop the order.  He discharged me that day in the early afternoon with prescriptions for pain and blood pressure medication. When I got to my pharmacy I found that I had been given another patient’s prescriptions. They were for a lady born 1932. I immediately called the hospital and spoke with the nurse on the floor I was on. She laughed and said ”That’s so crazy.” I asked if the doctor would fax or call my pharmacy to send the correct medications. I was told that I would need to wait until the next day. I told them that I needed the pain medicine but they said there was nothing they could do.

 

 

 

 

My nurse came in to give me medication.  She said, “It’s time for your blood thinner.” It was a pill this time. I asked what she was giving me and she told me it was Coumadin. I was very concerned and questioned the nurse about this but was told that it had been ordered for me.  Later that evening I told my nurse I was having chest pain. My abdominal pain became worse that night and chest pain increased. I was having shortness of breath and hearing a strange gurgling in my upper chest. My nurse took my blood pressure. She told me it was very high. I said it felt like my heart was skipping a beat. She commented that it did sound as if it was skipping.  At this point I had not seen anyone but my nurse and no other tests had been done.  That night my abdominal pain became worse. The next morning the doctor told me again that she was going to discharge me.  She said that if I had more pain I could come back to the ER. I told her I was still having the same pain and that no other tests had been taken. She said, “It’s just a little kidney stone.” Again I was visibly upset by this lack of care.  About an hour later Patient Relations and the nurse in charge of my floor came to my room. They informed me that the Coumadin I had been given was actually for another patient down the hall from me. I told them that my pain was worse and that I was now having chest pain and had not seen any doctor about this since being admitted. They did not say anything about the shots in my stomach. They told me I would not be discharged, that I would be given a new doctor and sent me to urology for tests.  My blood pressure was high at this point and chest pain escalated. I was given blood pressure medication.  Urology tests came back showing nothing abnormal. 

 

 

 

 

I experienced abdominal/pelvic pain much more severe than before and returned to the ER.  The doctor saw me and administered IV pain meds. The hospitalist nurse practitioner  saw me in ER and talked to me about admitting me to the hospital. However, she told me that she needed a reason to admit me and wasn’t sure at that point what that would be. I told her I was in severe pain and that no one was able to find a cause. She decided to admit me that day, Wednesday Feb. 15, 2012.  I was given IV pain medication every 3 hours. I was given a shot in my stomach. I asked what this was for and the nurse said it was a blood thinner. I told her I was concerned since I was anemic and asked her to check to make sure I actually needed it.  I was told that I would receive the shots every day since I was in bed and at risk for blood clots. I asked the nurse if I could speak to a doctor about that. She said the doctor was communicating with her over the phone.  The nurse said the shots were ordered.

 

 

 

The ER doctor performed a CT scan, blood work and a urine test. The scan showed a swelling on my left ovary and a collection of fluid on my right side. He said my gallbladder looked inflamed. He administered a vaginal exam because of the pelvic pain.  He told me that results were not conclusive so they administered IV pain meds and sent me home that evening. 

 

 

 

 

I saw a different doctor because mine was not available. She thought that I might have kidney/gall stones or pancreatitis and recommended that I go to the ER.  She also took a urine test. 

 

 

 

 

At 2 p.m. I experienced severe abdominal and pelvic pain while at work. At 7:30pm I saw a doctor at my local clinic. He ordered a urine test and found blood. His opinion was that I might have a kidney stone or pancreatitis. He recommended that I see a doctor in the clinic the next morning to run tests.