Just got smacked direct in the face about 4 hours ago. Told by GI specialist and surgeon at state university that they recommended 18 inches of my intestine should be taken out due to fistula/stenosis. Stated may have to have a bag for a few weeks until they can attach back. What?? Wife and I were floored and at absolute loss with questions. Just now getting my senses back. Will try brief history since I have been accused of being too wordy on this site. Oh well, I need help and some support. 1999 diagnosed with mild crohns. put on pentasa which I thought worked fine for 15 years. Few minor cramp episodes each year. No other issues. Very manageable. Last year frequency of episodes increased causing life interruptions but surprisingly severity of pain cramps reduced. Lot more bloating and noise in gi. Did lose weight because I reduced my diet in order to stem episodes. Went to local GI. He preformed scan which showed a Fistula formed near ileum. Recommended start Remicade. This shocked me due to the procedure and possible side effects. Never had any health issues in my life outside of taking a pill. He Suggested I get 2nd opinion from university-nc health specialist several hours away to confirm issue. Went into this 2nd opinion hoping they had something less evasive than Remi. Wow was I shocked, Came out far worse! Really do not feel bad enough to require surgery. I just have mild cramping and bloating. Surgeon stated fistula close to stenosis and remi would not do much. I do want to settle gi tract and feel better. Want to go out to eat with my family without worrying something might trigger cramps. Do Realize this fistula is probably a game changer for me now. I now graciously prefer to sign up for Remi as local GI advised as opposed to surgery as the university folks state. I am self employed and cant be out of work for a month from surgery along with living a physically active life that keeps me mentally vibrant. Any issues with trying Remi first to see if it works before possibly getting cut? Really struggling with all this and greatly appreciate advice. My prayers go out to you all!
Told I should go with surgrey?? really
- Thread starter Atlantic
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cmack
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Hi Atlantic,
Ron knows a lot more about this stuff than I do, but I agree. Surgery should be a last resort.
I'm here for support.
Finest wishes,
cmack
Ron knows a lot more about this stuff than I do, but I agree. Surgery should be a last resort.
I'm here for support.
Finest wishes,
cmack
Unfortunately with Crohn's, it can sometimes cause extensive damage without major symptoms being apparent. I felt ok just taking pentasa only to find out I had an abscess and narrowing. Was in a similar position to you, managed to sort abscess and waiting to see about narrowing. I'd give remicade a go but maybe not wait too long to see if it's working without tests etc
Hope whichever you choose works well for you
Hope whichever you choose works well for you
Thanks so much. Yes I much rather go with Remicade and hope this is still a beneficial option. I will consult with my local GI again for the 4th time about this. We were so dumbfounded and not prepared when we were told yesterday by university GI folks surgery is the route they recommended. Never really asked why I could not try remi first. Seemed to indicate it would not do any good in their opinion. If that is the case and I do go Remicade first but found it is not working and had to go surgery, am I burning the use of it or other bios in future? Did they mean remi may be more beneficial after surgery I wonder. Am I understanding right you cant start, stop and restart Remicade?
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Here's something to keep in mind with trying remicade first. Remicade isn't a med you can generally go on and come off of repetitively. Once you stop remicade then it is likely your body will develop antibodies to the med creating a higher chance of reaction and making the med ineffective. That's why people generally go on remicade and stay on til it is no longer effective for them.
If you go on remicade and it's not enough to change the already set course of stenosis the upstate docs are stating then you may have to have surgery. And you may feel you don't need remicade any longer but then you possibly burnt a med for the future because your body may develop antibodies if you stop then start back.
Just because remicade can't reverse damage like stenosis doesn't mean that it wouldn't be effective for your CD so you don't want to burn a med in the Arsenal.
I would discuss all this with your GI and get his take. Stenosis refers to narrowing and if that narrowing is due to scar tissue all the remicade in the world can't fix that. So, discussing what is causing the stenosis might be the best place to start.
If you go on remicade and it's not enough to change the already set course of stenosis the upstate docs are stating then you may have to have surgery. And you may feel you don't need remicade any longer but then you possibly burnt a med for the future because your body may develop antibodies if you stop then start back.
Just because remicade can't reverse damage like stenosis doesn't mean that it wouldn't be effective for your CD so you don't want to burn a med in the Arsenal.
I would discuss all this with your GI and get his take. Stenosis refers to narrowing and if that narrowing is due to scar tissue all the remicade in the world can't fix that. So, discussing what is causing the stenosis might be the best place to start.
