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Date Joined Nov 2007
Total Posts : 106
Posted 1/30/2008 8:43 AM (GMT -6)
I need some advice, i had a colonoscopy yesterday and was told i have a stricture close to where my last surgery was done(Terminal Ileum) I asked my GE did he know whether it was just narrowing or was it scar tissue. He could not give me an answer and was very vague about
the whole thing, but said they need to do the Small Bowel Follow Through to know for sure. That's fine but should they not be able to tell this from the colonoscopy - after all it is a camera and they can see everything on the screen in front of them.
Also what P**'d me off most was that he straight away said that the only way of getting results would be to have surgery again. Now i have real issues with this GE because after my surgery in 99' he never ever suggested that i take any medication to help keep the disease at bay, even though i had been having bloating and D on & off for years after - he kept telling me that these were just IBS symptoms and that i was actually in remission. And low and behold here i am again, facing surgery.
So my question is - if this is not Scar tissue thats causing the narrowing then what are the best medications (in your guys experience) for healing this.
And if it is caused by scar tissue, is there really no option but surgery??
I think the narrowing is pretty severe, just going from my symptoms, and that everytime i eat a thing i bloat so bad that i look 5 months pregnant. I would love to think that there is some medication that could help with this stricture & stop the bloating, D & some C, it alternates between both.
If anybody has any advice i would be so grateful. I really need to have some strong arguments ready for my next appt with my GE as i'm not gonna let him talk me into another surgery. At least not until it gets to a stage that it's my very very last option. Thanks in advance...
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Date Joined Mar 2006
Total Posts : 1169
Posted 1/30/2008 9:01 AM (GMT -6)
Well the colonoscopy can see all of your colon but only the very last few inches of the terminal ileum even under the best of conditions, so if the narrowing is even 2-3 inches up into the TI, it can't be visualized directly and has to be assessed by SBFT. I would think that prednisone could reduce any inflammation involved, but of course as many posters here have noted, if the narrowing is from scar tissue, no medications will help. It may be that a CT scan would be more definitive, or even the capsule endoscopy, which does give a direct look all the way through the small bowel. As for the no-med approach, I question that -- disease serious enough to have sent you to surgery in 1999 ought to have been treated with meds to minimize further damage and the prospect of more surgery.
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Date Joined Feb 2007
Total Posts : 1010
Posted 1/30/2008 10:08 AM (GMT -6)
I agree with Mike. The problem with crohn's is sometimes it expresses itself as a simmering problem. It doesn't flare up and cause terrific problems, so sometimes symptoms are tolerated for long periods. But cumulatively the results of this simmering inflammation is layers and layers of scar tissue. By the time the symptoms are intolerable -- bloating, malaise, partial obstruction, full obstructive episodes, pain, cycles of diarrhea and constipation -- the damage has already been done and surgical intervention offers the only prospects for relief.
the frustration you are feeling about
the examination, again Mike is right. Not only can a colonoscopy not visualize much beyond the TI, if that is where your stricture is, it is quite likely the scope can't pass through to evaluate the actual area of inflammation/scarring. You definitely need further investigations but SBFT is not the gold standard. pill endoscopy or CT enteroclysis would probably provide a more definitive result.
In the meantime, what is the problem with a course of prednisone. If you get relief from symptoms then it might be time to consider use of immuno-suppressents or at least an anti-inflammatory like Pentasa. Immuno-modulators like Remicade or Humira may not be the answer in your case since either might actually exacerbate the stricture because healing, when it occurs, is often very fast. that can lead to more scar tissue.
If you don't achieve a response on medication and you have run out of medical options, there are still some options besides resection. They range from balloon dilatation to stricturplasty neither of which results in resectioning the bowel. If you do require a resection, new surgical techniques allow the resected ends to be fashioned so that the small bowel is actually secured in a transverse (sideways) position allowing for a greater
opening than if refashioned end to end.
You have the evidence now, that these "IBS" symptoms you have experienced since 99 were in fact symptoms of crohn's disease activity. (strictures do not develop overnight. they are the result of long-standing crohn's activity). I hope you will be able to use this self-knowledge in the future to ensure that your health care providers listen when you complain. Remind them of these findings. Do not allow your symptoms to be brushed aside. What you experienced since 99, this is what crohn's disease feels like for you. They are not symptoms that should be ignored. Even though they may be more tolerable than the symptoms often described by others on this site, they need to be attended to with just as much vigilence as someone experiencing fevers, bloody stools and intractable diarrhea.
I am so sorry that you again find yourself in this position. Hope you can find some medication that will reduce your suffering and stave off the need for surgery.
30+ years living with Crohn's.
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