Unfortunately, while I was there, I was sicker than I have been in a long time. Of course this is relatively speaking, since I'm pretty much sick every day. But let me back track a bit...
My mom found the best GI doctor in the area by leaps and bounds. This guy is good. He was a no-BS kind of guy. I met with him - basically to see if I liked him, and he wanted to take me on as a patient. I believe he said that my case is very "interesting". He didn't want to keep giving me the same tests that I have had over and over again - which is good, since I basically glow in the dark as it is. There was, however, one test that he ran on me that hadn't been run on me due to potential issues.
Whelp! Issues were found. So - there is a test called a "Capsule Endoscopy". Basically, you swallow a camera and it films your insides. The reason that this hasn't been run on me, is due to the fear of needing emergency surgery due to the capsule getting stuck. (Malrotation is really a bitch - though not as bitchy as Crohn's). Well this new Doc told me about a Patency Capsule. Basically a dummy pill. So - you swallow this pill (way bigger than a horse pill - like it was HUGE!) and then 24 hours later you get an X-ray to see if it's still there. After about 30 hours it begins to disolve. No harm - no foul...
Not so much with me. X-ray showed that the capsule got stuck mid-intestine. I was told if there was nausea, vomiting or pain that lasted more than 4-8 hours to go to the ER. Well - I took the pill on a Thursday, X-Ray that Friday, ER that Saturday - then they sent me home in the same general health I was in when I got there. The X-ray showed no issues and they didn't want to keep me (even though I wanted to stay, which I never want to stay). Went home, went easy on eating - switched to my lovely array of jellos and gatorades. By Tuesday - I couldn't even tolerate water or ice, then I started to throw up. I never throw up - this was serious...
My father proceeded to take me to Asheville - about an hour away from my parents house. After finally getting my new doctor on the phone he was able to tell the ER docs what test to run.
They ran a CT Enterography with and without contrast. Basically I had to drink three delightfully grotesque bottles of Barium - think Grape flavored Glue like substance. Then they take me in for a scan, then give me IV contrast (makes you feel like you've wet yourself - which I did NOT) and then we waited for the results.
Results came back - and for the first time in a long time - they actually showed something. I had a partial bowel obstruction AND a section of inflamed Crohn's in the center of my intestines. They then had me admitted (they couldn't fit me in the hospital I was already in so they transported me via Ambulance to the sister hospital).
The next few days are kind of a blur. Nothing to eat or drink - just ice chips which I didn't even want. I was in an immense amount of pain and had no idea what the plan of action was.
Now - before all of this had happened, I was supposed to return to PA for my next Remicade infusion. Since I was admitted to the hospital there was no way I would make it home in time to get my infusion - so the doctors set out to get my my infusion while I was an inpatient.
Well this turned into a whole ordeal. Basically - since I was an inpatient, the hospital didn't want to give me my infusion until I was discharged so they could bill my insurance. That's right! Don't give the girl who is in severe pain something she needs to you can make all of your money. Cause bottom line - money is really all that matters.
Luckily the on call GI doctor (who worked with my new doctor) said she needs this, give it to her! So that Friday, I got my Remicade infusion. **Fun fact - I actually brought up my blog post from my "Follow Me" Remicade treatment so the nurses would know how to do the infusion. (They never do it in patient so my previous anal notes actually helped me!)
At this point - they started me on IV steroids (THE WORST!!) in order to get the inflammation to recede. But nothing else was done - no other tests, no other treatments - didn't even speak to a surgeon regarding the blockage...this to me was seriously strange.
Then Saturday came. First of all, weekends in hospitals suck. No one is there and you basically just have to push through and hope for Monday to come without any issues. Second of all - the doctors switch up on Saturdays. So the general Doc I had been working with (who cared about the amount of pain I was in) and the GI doctor who was my proxy to my new doctor were all replaced with the following weeks on call docs.
The new general doctor was unbelievably horrible. He was a squirrelly little man who didn't discuss decisions with you. He came in and met me and left. Next thing I know he advanced my diet and lowered my pain and nausea meds. (NO SENSE!) Then the new GI doc came in and he said they were going to start me on a new drug called Imuran (autoimmune drug). Imuran takes anywhere from 6 weeks to 3 months to actually do anything. It also has some scary side effects (lymphoma, skin cancer etc...) which is why my doctor in PA hadn't put me on it yet.
I was hoping since I hadn't eaten in days I would be able to move up the "food chain" (clear liquids -> full liquids -> low residue diet) within a day or so and get out of the hospital.
Well - I couldn't tolerate the full liquids (pudding and cream of chicken soup). I got seriously sick again - and didn't have anything to help rid me of the symptoms.
Sunday comes around - and I had cried the previous evening to my nurses because I was so upset and uncomfortable. I had no doctors to talk to, and I was extremely alone and depressed. I ended up writing a list (like full page, front and back) of issues that I had. My mom joined me to meet with the doctors on Sunday - and basically she felt like (and I did too) that the doctors weren't doing anything actively to help me. They cared about getting me off of pain killers and out of the hospital. Not actually treating the obstruction or imflammation. I asked them to removed me from full liquids and what else we could do.
NO ONE would answer me. I couldn't get a hold of my new doctor, and the replacement doctors were no good.
Well - my dear Deddy came to the hospital Monday morning. And boy, I've never seen John John talk to people the way he did. He stood up for me and questioned the doctors. The doctor was basically talking in circles. His primary concern was me being on pain killers. My dad said - okay so what does she do about the pain. He said the Imuran would help (again not for 6 weeks to 3 months). My dad asked what I am supposed to do in the meantime. The doc said I can't be on pain killers. My dad asked again what am I supposed to do (meanwhile I understand where the doctor is coming from - but he refused to be questioned or to see my point of view). My dad asked why I had not consulted with a surgeon - and the GI doctor said - I'm not a surgeon. I kid you not. RIDICULOUS! I asked to be treated like I was an out of state patient going back to PA to continue treatment and asked to be discharged.
Trying to explain to someone what it feels like to be in constant pain - every single day - is difficult - and even more difficult to do without getting emotional (add steroids and you've got a party!). I felt like the doctors were judging me, and had no want to help me get better. I've never felt like that "patient" before. I'm usually the quiet one who waits patiently and doesn't make a fuss. This hospital stay was just the pits.
Fast-forward to the next day - and I met with the afformentioned new doctor. He basically said that he thinks I'm immune to medicinal therapies and that I need to get in to see a surgeon sooner rather than later. So currently - I'm scheduled to visit with a GI doc at the Cleveland Clinic in June. I'm also trying to get in to re meet with the new head of Colorectal surgery at Temple. Now that I have test results showing where things aren't working, I'm hoping someone will be able to help correct my issues and make me feel better.
So as shitty of an experience that I had, I'm extremely happy to at least have things to work with now.
As for the move to North Carolina - well lets just say it's on hold for the moment. I need to get better before I do anything.
Thanks for listening to my rant!! If you have questions...I'm an open book (but you probably already knew that already.
Next subjects will be much more fun! True Detective, Divergent, Mud....you know entertainment stuff ;)
bright side of NC happened to be these faces...and some others!
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