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Pred, entocort not working strictureplasty discussed

Went to dr. this week. Pentasa, prednisone and entocort doesn't seem to be helping put me in remission, still having symptoms. When first diagnosed I had a stricture but could not tell if it was from scar tissue or imflammation. Small bowel follow through could not give definitive answer. I think dr hoped pred and entocort and pentasa would do the trick. Although I am not having severe pain, diahrrea is starting again now that I am on 10 mg. pred and entocort. Dr. suggested surgery but I just can't seem to go for that at this point. How do they know how bad a stricture is? MRI? another follow through? I am waiting on more bloodwork. Dr. doesn't think humira or remicade would help until we do something about the stricture but I am scared of surgery. Any comments would help.
 

Jennifer

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A strictureplasty will allow you to keep your bowel rather than removing it. Chances are your doctor feels its mainly if not all scar tissue in that one spot. What was the highest dose of Prednisone he had you on before deciding to taper? They usually start a taper on the steroids before surgery to help prevent complications so it seems like your doc is already prepping you for that. An MRI may show for sure if its scar tissue or inflammation. An experienced radiologist should be able to tell the difference. Even when I had my small bowel follow throughs the radiologist would point out what was what. Perhaps the images they got in your sbft weren't clear enough.

May I ask why you're against it? If its scar tissue you only have 3 options and stretching it isn't permanent and depends on size and severity so that leaves a strictureplasty or a resection.
 
How long ago were you diagnosed?

Where is the stricture located in the small intestine?

How big is the stricture?

I can only comment based on my son's case. He had multiple strictures, the longest that could be measured was 14 cm or about 6 inches long in the distal end of the TI. At the time of that SBFT, the radiologist felt it was a combo of scar tissue and inflammation but could not say for sure and some of the strictures could not be imaged well enough.

My son went on Humira plus 6-MP and then switched to Humira plus MTX. After 2 1/2 years he was in solid remission. We dropped the Humira and he continued on MTX for another 1 1/2 years. He has recently started having sx and had an MRE.

The MRE showed NO strictures at all anywhere in his small bowel.

So I think it can be hard to know whether a stricture is scar tissue, inflammatory or a combination until you are in remission.

You don't always have the luxury of waiting to find this out.

I suggest you go for a 2nd opinion at someplace actively involved in Crohn's research. Not because you want to be in a research trial but because this is a way to identify a program that is up to date and sees a lot of patients. You want someplace that sees lots of patients because then they have a lot of experience to draw on when they make their recommendations. Only caveat - I would always insist on talking directly with the attending or supervising physician (as opposed to residents or fellows) before making any treatment decisions.

I will say that there is some pretty good data supporting a surgical approach for patients whose CD is confined to the area of the ileo-cecal valve.

You might want to check out this article then take it with you to your GI and ask if the findings apply to your case:

http://www.ncbi.nlm.nih.gov/pubmed/22105722

Natural history of ileo-caecal Crohn's disease after surgical resection. A long term study.

"Conclusion:

Surgery is an excellent treatment for patients with isolated ileo-caecal CD. The overall long-term outcome is good: by 10 years after operation approximately 50% of patients are free of clinical recurrence and over 70% do not require further surgery."
 
I agree I feel the doctor might be treating your flare too lightly if he cannot tell from the scans how does he think the biologics won't do anything? If you are not having symptoms of a structure then don't get surgery go on a biologic and drop the others. If you have never taken them and they are suggesting surgery I highly recommend a biologic.
 
My doctor doesn't think the biologics will help if it is scar tissue but we are waiting another 2 weeks on entocort and pred with pentasa. He would have to refer me to a surgeon which I was not expecting but he said we would have to do another small bowel follow through or try the expensive biologics which is what I would rather try before surgery. I'm still confused about the whole thing and I don't want surgery unless it is truly necessary.
 
I am willing to try Remicade or humira if that would help put me in remission. If you have a stricture, how much would remicade or a biologic help? How long would that put off surgery? I know some of it depends on how bad the stricture is. I'm still not sure about that. I just feel like I'm grasping at straws. I am back to where I was before starting pred, entocort and pentasa and it is discouraging. Thanks for any input.
 
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