New here

[yellowamc]

Hello everyone. Im not really sure where to start, or to keep the story short or go into full details. I guess I can start with im not very good at spelling lol, and most of my meds I cant even pronounce let alone spell. I was diagnosed with crohns in 2005. I had been having symptoms for about three yrs prior, but always wrote it off as something else. Did have some basic blood work because I was unable to maintain weight, but nothing was ever caught. It wasn't until 2005 when I went to er for stomach pain. Ends up I had a full blockage and was rushed to o r for a strictureplasty. My surgeon noticed the narrowing in my small bowel singed me up with a g I doc and away we went. I have been on almost every med out there list is a mile long. started biologicals in 2009 I was taking Pentasa at the time, but took a turn for the worse. Ended back in the e r and my g I doc put me on remicade. I was on that for a while, My body found a way around it somehow. Or it was just time for surgery. Needless to say me and my g I doc didn't get along, that was when I actually saw him which was pretty much only in the e r seems he was running a production shop only saw the p a. So finally after remicade doses pretty much every week, and even double doses I finally demanded surgery.
So much for making a long story short lol. After meeting with my surgeon I was scheduled for a bowel resection. Course this was after all of the great test they do to see if its needed ( I drew the line at the swallow the camera pill thing). Went in for surgery maybe I should stop here. Ive always wanted to join something like this, but I really don't wanna sound like im complaining or scare anyone. Anyway im new here

 

[Jennifer]

Hi yellowamc and welcome to the forum!

I'm sorry you had to deal with a full blockage, those can be really painful and life threatening. You cut your story down pretty short. I actually got sucked in while reading. Did you have the surgery? Why didn't you want to do the pill cam (scared it would get stuck)? What's the medication plan now? Are you still with that GI even though you don't seem to like them? Ever think about seeing someone else?

Sorry for all the questions. Keep us posted.

 

[yellowamc]

Thank You, like I said I didn't wanna sound like I was complaining but I will finish story let me see where I left off lol. Ok here we go, yes I had been in for many remicade infusions and it just stopped working. It was bringing my crp down at one point it was up to 76. My doc had me get another upper g I, they call it something diff tho. They put a tube down ur nose and pump the barium into ur bowels. A section or of my bowel had shrunk down to around cocktail straw size the elium area (sure I messed that one up lol). So I went back to office to get results, the p a of course not the doc said they wanted to do one more test, and already had it preapproved with insurance. He gave me the paperwork that explained it, I read over it quick asked him what if it gets stuck. His answer was , well then we will go into an emergency surgery situation.
At that point having been down that road, and seeing the size of the pill I said no way. He finally sent me to surgeon. Here is where it gets real ugly. I met with surgeon he filled me in on how things would go was supposed to be about 2.5 hours. Well I went in for surgery ended up bein 5 hours. Ends up my bowels had fused themselves together, to my abdominal wall, my gal bladder, and my appendix. All of those had to be removed my bowels separated and 12 inches removed. I was basically cut from stem to stern lol, first scar got a lot bigger. I stayed in the hospital for thee days, on the third day spent most of the day throwing up. on the fouth day I went home. Two days later was back in the e r with a partial blockage already. They changed my pain meds from perkaset to dilloudin and it seemed to help.
After three days I finally got semi normal and they sent me home. And yes lol shortly after I could function I was at my g I doc. the p a reffered me to another doc that likes high risk cases. Since then its been kind of a roller coaster. My new doc is great and really on the ball. I still have no idea what remission feels like, but he has gone out of his way to get me there. He has even sent me to the local university medical dept. for second opinion. currently im on a list of meds and like I said cant spell them all but here goes. cimzia, methatrexcate, hydrocodone, enderal, dycyclamine, cholostyramine. some others but those r more for side effects of my mane meds. Anyway Thank You for wanting to listen

 

[Jennifer]

How long have you been on the Cimzia and Methotrexate?

Surgery doesn't always go as planned because the surgeon doesn't know exactly what they are going to find until they actually get in there. Sorry you had a blockage so soon after. I hope you start feeling better soon. Keep us posted on the second opinion and how that goes.

 

[yellowamc]

Ive had that done already. That's where the med combo that im on came from. Don't believe ill ever go into remission, but the current meds seem to mask my symptoms. And on the surgery u r so rite, I will say I had the best surgeon in the world. He stopped twice a day when I was in hospital, and returned one of my phone calls from the ski slopes lol that guy is the best. Most important has been my wife she has been thru this twice in 8 yrs. I think without lookin at her smile every time I woken up, or her holding my hand when things weren't goin so good I would have given up. Again thank you for wanting to listen.