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Where to next?

where to next?

Hi all. I didn't plan in posting here but I'm currently sitting in thehospital and don't know what to do with myself.

I'm 23 years old and was diagnosed in 1996. Since then I've done multple rounds of bowel rest and tpn, have had 3 resections, tune feeding and been on more meds then I can remember. My saving grave turned out to be remicade. It kept me in remission for almost 8 years. But sadly nothing lasts forever. In 09 it started lossinc its effectiveness which called for a new plan of action. I tried humira and entocort but nothing worked other then predisone. For me the side effects of predisone out weigh the positive effects so surgery was done at the end of Dec 2010.

This is where the fun really began. After surgery 2 weeks later I ended up back in hospital with a fistula/abcess. It was a very frustrating stay, it seemed the dr's couldn't figure out the problem and weren't telling me anything. 15 days later I left the hospital with a prescription for cipro, flagyl, abd humira to try again (even tho it did nothing in the past).

Finally we move foraward a month and I'm back in the hospital. I was initially admitted for nutrion control and observation because of the 40 pound weight loss in 2 months. An MRI was done a few days ago and it shows I'm more flared then before surgery, I have 2 strictures in my large bowel, and the fistula is still there and going strong. My MRI a month ago just before discharge apparently showe the same thing and no one even told me! Currently I had a cooks catheter put in for some more TPN To rest the bowel, started imuran again and increased humira to weekly. That's all there is. Hopefully I can start TPN at home asap.
 
Hi jlm,
You've certainly had a rough time. I hope the docs can get you back to remission.
At least you have the internet in the hospital. I always enjoyed that during my 3 stays.

Good luck to you - let us know how it goes.
 

Crohn's 35

Inactive Account
Hi there, welcome to the forum. You sound like you have severe crohns and frustrated would be not the word I would use , I have to say you are brave. I have had 2 resections and last year was sought to have another. I now what it means with our medical system, whilst it is not near as bad as the states, at least they get emails or can see their files or get told what is going on right down to the numbers. I hate it when they dont tell you how bad something is. What is wrong with admitting they just dont know? Instead many things get covered up, and therefore cant understand our selves what is going on. It is nice to make a decision that both can live with. I got 7 years relief but that was after my first surgery and entocort. Havent been stable since 2002.

I have been in one of the Winnpeg hospital 3 times for Lithotripsy, and wasnt impressed. :eek:

glad you are here, it is nice to see the young ones come on here to where we are not doctors but we know your pain. Let us know what happens ok?

:hang:
 

ameslouise

Moderator
Hi JLM and thanks for joining us here! You have really been thru the ringer. I hope the weekly humira starts to work for you and the tpn/bowel rest will help you feel better.

Please keep us posted on your progress. Hang in there!

- Amy
 

xJillx

Your Story Forum Monitor
Welcome JLM! I am so sorry you're are going through so much. Pen is right, you are very brave!

I really hope your new action plan does the trick. Please keep us posted!
 

Crohn's Mom

Moderator
Hi Jlm ! Welcome to the forum!
I sure hope you find some relief and your pain and frustrations are lessoned :)

Best of luck and stay strong !
 
Hi jlm :)

You've been through quite a story! I really hope the Imuran + Humira combo work for you. It seems to be working for me and I had both fistulas and an abscess. I haven't had Crohn's for quite as long as you though. Either way, I hope it works and the TPN gives your bowels a good rest. :) Thanks for sharing your story with us!
 
Thanks everyone. Really appreciated :) things are about the same except ever since I had the central line put in I've had some crazy rib pain that makes it very hard to breath. They did an xray today but they haven't said anything. They just keep giving pain killers when I ask :(
 
Hey Jim it sounds like you have had a very tough time. I'm sorry to hear that. Welcome to the forum and best of luck with everything. Don't let this disease get you down. There is a lot of support here so use it to your advantage.
 
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