Probable resection because they don't want to use steroids

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justwantofeelnormal
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Date Joined Feb 2014
Total Posts : 53
   Posted 3/7/2018 1:04 PM (GMT -6)   
I have a slow bleed from an ulcer that won't heal further up the ileum than the scope can see, and due to depth of ulcers, they don't want to give me Prednisone. Five days of pentasa and remicade have not solved the issue. Came in today, am receiving blood transfusion and I've been informed that unless I miraculously clear up they will perform a resection, removing the ileum and a small part of the colon. I guess this is all rather par for the course? The surgeon said a third of patients who have this done never experience Crohn's again, but given the fact that I've had inflammation and ulcers in the sigmoid colon before, I'm not expecting that.

scifigal2k
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Date Joined May 2012
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   Posted 3/7/2018 4:04 PM (GMT -6)   
Ummm, false - there is no way that that many people don't experience Crohn's again after the surgery. That may be true for Ulcerative Colitis, but NOT Crohn's. Is it the GI that suggested the surgery, or just the surgeon?

And 5 days of Remicade is NOT enough time to see about healing.

I think you need a second opinion.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

justwantofeelnormal
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Date Joined Feb 2014
Total Posts : 53
   Posted 3/7/2018 4:42 PM (GMT -6)   
Both GI and colorectal are on board.
Diagnosed UC in Europe 2013 / Undiagnosed in USA 2014 / Diagnosed Crohns 2018
Meds: Just started Remicade and take 4g of Pentasa daily

straydog
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   Posted 3/7/2018 5:42 PM (GMT -6)   
I was thinking you just started Remicade last Friday. As Lab said, 5 days is not long enough for either of these medications to become effective. I would be very leery of drs suggesting surgery this early without a fair run at Remicade. I am not talking a few weeks either. I am guessing the dr does not have you on Imuran with Remicade either. A lot of gi's use Imuran with Remicade for 2 reasons, helps keep from building up antibodies & my gi says it helps enhance the effect of the drug. If you end up needing surgery, I do hope you will obtain 2nd opinions.

I had an emergency resection done out of the country in 02. I had 4 different gi's try to tell me my crohns was gone after surgery was done. During that year & a half I was extremely ill & things were really bad. The resection was done because of a complete blockage & abscess. I had someone suggest a gi 30 miles from where I live. I live in a very large metroplex with some of the best drs around including a well known teaching hospital. I would have driven to the moon at that point. He did a scope & started me on Remicade immediately. It was after the third infusion that I could tell a little difference. Over time things got better. We ended up doing my infusions every 4 weeks as that worked best for me.
Susie
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justwantofeelnormal
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Date Joined Feb 2014
Total Posts : 53
   Posted 3/7/2018 6:54 PM (GMT -6)   
The reason for the resection now is the bleeding wont stop and hemoglobin went down to 5.4. The plan of course is to continue with medicines post-op.
Diagnosed UC in Europe 2013 / Undiagnosed in USA 2014 / Diagnosed Crohns 2018
Meds: Just started Remicade and take 4g of Pentasa daily

Labradorite
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Date Joined Sep 2009
Total Posts : 1116
   Posted 3/7/2018 8:41 PM (GMT -6)   
Yeah, the blood loss is a real game changer. In regards to experiencing symptoms after surgery, do they plan to keep you on the remicade afterwards? If yes then the claim is realistic but if they say you can go med free that's not realistic at all.

justwantofeelnormal
Regular Member


Date Joined Feb 2014
Total Posts : 53
   Posted 3/7/2018 9:18 PM (GMT -6)   
yeah the plan is to fend of relapse with drugs, 100%
Diagnosed UC in Europe 2013 / Undiagnosed in USA 2014 / Diagnosed Crohns 2018
Meds: Just started Remicade and take 4g of Pentasa daily

gumby44
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Date Joined Nov 2007
Total Posts : 4471
   Posted 3/8/2018 6:04 AM (GMT -6)   
I think it is a reasonable plan to do the resection surgery if you are bleeding so much that you are down to a hemoglobin of 5.4. Alternatively you can try a high dose of steroids along with the remicade, to see what happens, but honestly, I think your docs are correct.
I've been in remission since my re-section surgery in 2014 for whatever that's worth. I do have bad IBS, but I have struggled with that my whole life and it's a bit worse since surgery. Some people do stay in remission for many years post surgery....it isn't a guarantee though. But you are in trouble now, and something needs to be done better than you bleeding so much. Good luck with your decision.
59 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.
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