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Discouraging findings :(

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Crohn's Disease
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Posted 9/4/2017 4:28 PM (GMT -5)
Hello all,

So I just got the results from my pillcam, and they are pretty discouraging. Tons of ulceration throughout my small intestine and even some in the bottom of my stomach! I was on Uceris for 3 months and was still on it during the procedure, but now I've been off of it for about a week and only on the Lialda now (been on lialda for about 2 weeks). I was really thinking that the results would come back saying that I'm mostly clear, since I have been feeling a lot better lately such as less pain and bowel movements. I still can't gain weight I'm 99lbs, 5'5 and 19 year old female which makes sense now. I'm scheduled for an extended endocscopy now that goes down to the small intestine so my GI can get biopsies in my stomach and small intestine. I'm just so frustrated right now! I've never had this much ulceration. Any words of advice?
Posted 9/4/2017 4:41 PM (GMT -5)
My guess is that you are going to need biologics and the Uceris and Lialda is not effective. Sorry you are going through this.
Posted 9/4/2017 4:44 PM (GMT -5)
Thank you gumby. My GI was just trying to do the mild meds first and see if that helped before doing the harsher ones but I think that's what it's going to come down to
Posted 9/4/2017 6:30 PM (GMT -5)
Lialda doesn't really work well anywhere for Crohn's disease.

Uceris primarily works in the colon. That can help with your pain and bowel movements, but it won't do anything for small bowel ulcerations - which often are symptomless.

I agree with gumby that you're probably looking at biologics in the near future.
Posted 9/4/2017 7:58 PM (GMT -5)
Unfortunately, this is why the top down approach has gained so much popularity. To treat IBD with "milder" type and often outdated meds, often allows the disease to do a lot of damage.

Fortunately you're still young enough, and are hopefully suffering mostly inflammation.

Anti-TNF's are truly the way to go, with Remicade being the most likely choice.

Hope you're feeling better soon.
Posted 9/5/2017 10:24 AM (GMT -5)
Hi Surfer,

I was 18 when I was diagnosed. They tried the top down approach on me as well. My GI was in way over his head and they did mild medications with me for over a year while the Crohn's marched through my system. I suffered dearly until I was a 18 year old 6'1 male and was 93 pounds.

That's great they are going to take a look with the extended endoscopy. Biologics seem really scary and the side effects are scary. If I could do it over again I would have gone with aggressive medications sooner. I'm 31 now. I lost most of my 20's being sick, taking endless medications. The GI was just too afraid to put a "Kid" on some of those harder drugs. And the Crohns got way too strong and I had to do surgeries. I'm not saying that's going to happen to you just sharing my story.

I found a biologic that worked for me. Stelera. That combined with a hydration regimen and proper diet and some supplements I take and now I'm flying.

So don't get too discouraged. They took my entire large intestine and my intestines I have left have major scarring. But I live a normal life now.

Stick up for yourself in those appoints. Ask questions.

Sending well wishes smile
Posted 9/5/2017 11:26 AM (GMT -5)
I agree with others that is sounds like biologics are your best bet - hopefully thy provide you with needed relief. With that much ulceration I bet your not absorbing much of what you eat. Has your doctor talked about TPN? Being that underweight and malnourished can hinder healing and I can relate to how hard it can be to gain weight back naturally once you've lost so much.
Posted 9/8/2017 2:14 AM (GMT -5)
No Colon, thanks so much for sharing your story! That gives me hope and helps me feel less afraid. I'm glad you're doing so well now!

Myrne, yea I have been on some pain meds for relief. It seems like I'm not absorbing anything ! I can't gain weight and feel so weak sad so I'm sure biological are in my near future. I have not heard of Tpn but I have an appt next week and I'll bring it up. Thanks you!
Posted 9/8/2017 2:16 AM (GMT -5)
Mryne can you give me more info on TPN please? Have you done it? And would I just ask my GI for it or do they do it in the hospital?
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