I was Dx w/Crohns 14 years ago, took asacol for 12-18 months then stopped. GI said during colo's that things looked good, negative biopsies, so we assumed I was in remission. However, the CD was in my ileum, and had caused a 20 cm stricture so narrow, a pediatric scope could not get in. So after years of thinking I was in full remission (no symptoms, no apparent dietary limitations, no meds, just this scarred area) I started having chronic stomach pain - though nothing unusual in the bathroom, no weight loss, vomiting, etc. After an Upper Endoscopy, Upper Gi/sm bowel follow through, colonoscopy, CT Scan, MRI, we finally know that my 'strictures' are inflamed -vs. scarred-and therefore medication is indicated. My. GI went immediately to Humira, but I can't get my head around that one - am I really that sick? I visit the facilities daily or every other day, no D, minor weight loss, more due to my lack of discipline, sometimes due to pain, but I know what foods to avoid to avoid pain. Anyone have a similar experience or wisdom to offer? I would be so grateful. - K
Don't know what to do, is my CD that bad? Am I in denial?
- Thread starter Kimba12
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For a lot of IBD'ers whose ileum or small intestine is affected they don't necessarily get D. My son's inflammation is in his terminal ileum and D wasn't a symptom for him either. There are a number of GI's that believe in the top down approach to stop the disease in its tracks and get into remission quickly in hopes of the disease not progressing to more severe forms. But if you feel uncomfortable with the meds proposed you should consult with your GI let him know your concerns and ask for other options he'd be willing to try. Hope you find remission soon!
Hi Kimba12 and welcome to the forum! 
As suggested speak with your GI about your concerns.
Humira has been very helpful for many people from mild to severe cases of Crohn's. I even tried it recently and I'm in remission (I take medication to stay in remission, had to stop 6MP so now I'm on the search for a med that works for me, next up is Remicade). I've gone from the bottom up approach and eventually had to have surgery. Personally I feel that the more aggressive the treatment is in the beginning then you can get the inflammation under control faster so you may not have to go under the knife for a while and hopefully not at all. Inflammation causes scar tissue and scar tissue causes a narrowing which can cause a blockage which can be deadly and will likely require surgery (partial blockages are a different story but may lead to a full blockage in the future). Its one of the many snowballs of events we have to try and avoid. Your symptoms may not currently be bad but we also don't want them to get worse.
As was pointed out to me in the past, it may be the way these medications are administered that makes them seem so scary. I've been so used to just popping pills but thinking about injecting it directly or having an infusion just sounds horrible but they aren't horrible and have helped many people on the forum. Personally I see these medications as progress in the world of medicine. They're much newer than meds like Asacol that we're used to. Change is always concerning or frightening in the beginning.
Since your disease is located in the small intestine I encourage you to have your vitamin levels tested as people with Crohn's are prone to vitamin deficiencies (or may be low). Definitely have B12, Iron and vit D tested but might as well test them all while you're at it.
We're all looking forward to hearing about you going into remission. Keep us posted. Again welcome to the forum!
As suggested speak with your GI about your concerns.
Humira has been very helpful for many people from mild to severe cases of Crohn's. I even tried it recently and I'm in remission (I take medication to stay in remission, had to stop 6MP so now I'm on the search for a med that works for me, next up is Remicade). I've gone from the bottom up approach and eventually had to have surgery. Personally I feel that the more aggressive the treatment is in the beginning then you can get the inflammation under control faster so you may not have to go under the knife for a while and hopefully not at all. Inflammation causes scar tissue and scar tissue causes a narrowing which can cause a blockage which can be deadly and will likely require surgery (partial blockages are a different story but may lead to a full blockage in the future). Its one of the many snowballs of events we have to try and avoid. Your symptoms may not currently be bad but we also don't want them to get worse.
As was pointed out to me in the past, it may be the way these medications are administered that makes them seem so scary. I've been so used to just popping pills but thinking about injecting it directly or having an infusion just sounds horrible but they aren't horrible and have helped many people on the forum.
Personally I see these medications as progress in the world of medicine. They're much newer than meds like Asacol that we're used to. Change is always concerning or frightening in the beginning. Since your disease is located in the small intestine I encourage you to have your vitamin levels tested as people with Crohn's are prone to vitamin deficiencies (or may be low). Definitely have B12, Iron and vit D tested but might as well test them all while you're at it.
We're all looking forward to hearing about you going into remission. Keep us posted. Again welcome to the forum!
David
Co-Founder
Hi Kimba and welcome to the community
You've received some wonderful advice thus far!
I'll come out and say it. Yes, you're that sick. If you have a 20cm stricture a pediatric scope couldn't get through then it's time to bring out the big guns. Get that inflammation under control ASAP to avoid future complications.
We're here for you
You've received some wonderful advice thus far!
I'll come out and say it. Yes, you're that sick. If you have a 20cm stricture a pediatric scope couldn't get through then it's time to bring out the big guns. Get that inflammation under control ASAP to avoid future complications.
We're here for you
Hi Kimba,
I'm very much in the same place as you. I'm actually laying in a hospital bed right now, where I've been since Saturday, waiting on final results from today's MRI. I was diagnosed 7 years ago and only used meds to relieve acute instances of inflammation while figuring out my diet. Once I got that under control, I only ever had small, one-day flares and only when I went off diet. Then a flare up hit that wouldn't go away, and they tell me that preliminary results show an 8cm stricture in my terminal ileum. I'm waiting to hear if it's scar or just current inflammation, but I'm still kind of in shock. I thought I had it under control, never had weight loss, always been regular in the bathroom (until this past two weeks), but now I might need surgery.
I obviously can't answer your question, but I'm definitely asking the same thing alongside you. I wanted to avoid the medications and surgeries, and have for the last seven years, but has it caught up with me? I'm curious to see where it all goes from here. Let us know where this turn takes you; as this forum seems adept at proving, I'm glad to see I'm not alone in this.
-SM
I'm very much in the same place as you. I'm actually laying in a hospital bed right now, where I've been since Saturday, waiting on final results from today's MRI. I was diagnosed 7 years ago and only used meds to relieve acute instances of inflammation while figuring out my diet. Once I got that under control, I only ever had small, one-day flares and only when I went off diet. Then a flare up hit that wouldn't go away, and they tell me that preliminary results show an 8cm stricture in my terminal ileum. I'm waiting to hear if it's scar or just current inflammation, but I'm still kind of in shock. I thought I had it under control, never had weight loss, always been regular in the bathroom (until this past two weeks), but now I might need surgery.
I obviously can't answer your question, but I'm definitely asking the same thing alongside you. I wanted to avoid the medications and surgeries, and have for the last seven years, but has it caught up with me? I'm curious to see where it all goes from here. Let us know where this turn takes you; as this forum seems adept at proving, I'm glad to see I'm not alone in this.
-SM
