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treatment options for narrowed small bowel

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Crohn's Disease
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Posted 3/1/2011 5:35 PM (GMT 0)
I've been fortunate that my second small bowel resection has lasted me 14 years.  But unfortunately over the last year or two I consumed some offending beverages in excess, and I've reawakened the Crohn's to the point that I now can't seem to get it back into remission.  My colonoscopy last week showed a very narrowed opening.  My GI opted not to dilate this time - he's dilated me 2 or 3 times over the past few years.  He thinks it's time to have my surgeon cut it out.

I'm not really savvy as to the algorithm for deciding to pursue imuran and/or remicade versus surgery.  Just wondering if anyone has any thoughts to share concerning how a person might rationally make such a decision.  My surgeon has also asked me to get an MRI enterography scan so we can see the length of the narrowing, and if it is short, then the inclination to do surgery will supposedly be greater than if it is long.  If it is long, then the inclination I'm guessing may be to contemplate biologics or some form of medical therapy.

I can get by on my peptamen os beverage as a meal replacement, but it seems that any real food is not tolerated too well.  I've read some studies that say that elemental diet is as effective as steroids for inducing remission.  We'll see.

I used to take Asacol but now the sensation of the pills going through my gut is like broken glass on an open wound, so I quit Asacol.  Am contemplating pentasa or Azulfadine/sulfasalazine.

In my experience I don't think prednisone helps me much, although I really can't tolerate the high doses - the most I can do is about 30mg for a week or two and then taper.  I tried imuran prior to my last resection and it did not help, but it may have been too little too late since that stricture was very well defined and narrowed.  This time around I felt that Entocort helped more than prednisone, but it seemed like each day the entocort would tide me over for about 16 hours only.  Not sure if anyone has ever spaced out their entocort dosing regimen.  I took the entocort for nearly a year.  I switched to prednisone in part, due to concern that entocort is perhaps not good for the gut over a long-term period.   Does anyone have any guidance on pros/cons of long-term entocort treatment?  I've not read much about entocort other than it being used with a single dose of 9mg/day for 6-12 weeks.

Thanks.

Posted 3/1/2011 8:28 PM (GMT 0)
I think the main question is whether the narrowing is active inflammation or scarring. Prednisone (or entocort) isn't going to turn the clock back on scarring, and I think there's some doubt as to whether any immune modulator could either.
Posted 3/1/2011 9:12 PM (GMT 0)
In prior years slight narrowing has been observed and has been identified as primarily fibosis (scarring). This time is different. This time there is clearly active inflammation and ulceration, consistent with active Crohn's. My subjective experience this time around is completely unlike any experience in the past 14 years - I've really awakened the inflammatory response.
Posted 3/1/2011 10:11 PM (GMT 0)
Then I think you'll find entocort to be effective, if the price tag doesn't give you a heart attack. ;-)

My GI won't put me on immune modulators or anti-tnf meds because "I'm not sick enough." If your GI is suggesting this approach, it might be worthwhile to do some reading on this forum - there has been a lot of good response to remicade & humira, good stuff (and bad) from 6MP (not sure about Imuran) and methotrexate.

I'm not sure how Pentasa or sulfasalazine would differ from Asacol in that they are both tablets and have to go through the bowel (well, I guess they may dissolve sooner than the Asacol). I use both of these meds with pretty good results, but I don't have any strictures (that I know of).
Posted 3/1/2011 10:16 PM (GMT 0)
 

Hey man...   you're likely to face another surgery. Usually, this narrowing is a mechanical process, so you have to make a mechanical intervention. It seems you know that...

Best luck! I just came out of my third one.

 

Posted 3/2/2011 3:12 AM (GMT 0)

Djin, said it for me. I think you're to far gone for med's, at this point. resection, then med's. You have to be in pain right? The last resection I had, I stalled it off for 8 months, dr's kept close watch, making sure i didn't obstruct (could perforate). I went thru 10-12 vicodin per day. It was a finanacial thing, I needed to make money, I didn't want to take time off. I was in canada for horse racing season, and i had just got there 1st of march and races started 3rd week of march. So I said to dr's after season is over, we made appt. for mid Nov. terrible mistake, waiting like that. good luck to you

AG

Posted 3/2/2011 12:49 PM (GMT 0)
I have been dealing with blockages from adhesions for the past 6 - 7 years. They started out just a few times a year and resolved in a matter of hours. Now it is happening every few weeks and taking days to resolve. The last one started on Super Bowl weekend and hasn't completely cleared yet. Testing has shown that I now have a slight narrowing at the same place, probably due to scaring over the years. I had a C-scope in November and the area was clear of active disease and narrowing. I tried a steroid burst, but had NO improvement. I want to stress that NO part. If you try steroids and there is little to no improvement then the problem is most likely scar tissue. There is no medication that will fix that. But you already know that since you've been dilated.

I will be having my 4th resection on Friday to take care of this blockage and small narrow area. Every day that I wait the pain is worse and my nutrition goes down.

If you have not had any change with steroids then I think you have your answer. The longer you wait, the more of your life you lose to feeling sick. I am looking forward to getting better in time for the good weather and being able to enjoy life again. I don't want to waste anymore time feeling awful.
Posted 3/2/2011 3:13 PM (GMT 0)
Zanne - how were your adhesions diagnosed? What is the clinical test that confirms adhesions? Also, I've read several reports that say that if a person with adhesions drinks gastrografin, it can provide relief from the adhesions and can often improve the outcome. Not sure if you've read any of that stuff, but if not, you might want to peruse pubmed on the subject. I looked into that after going to the ER some years ago and drinking gastrografin for the CT scan, and finding that it seemed to provide some relief. It prompted me to look it up on pubmed, and I found to my surprise that it is apparently used therapeutically for adhesions. I believe that some of the literature indicated that surgery was often avoided when using gastrografin first. Anyhow, might be something of interest even if it's not necessarily a panacea for you.

I do get some relief from steroids. Entocort's relief is about 16 hours. Prednisone though, I can't really tolerate the side effects of the high doses that result in relief. I tried 30-35 mg pred, and it helped, but I couldn't tolerate it, so I'm tapering. I'm highly convinced that this is not merely a mechanical problem. I feel that this is a problem relating to swelling and ulceration. If it were a fibrotic matter, it would be an easy call for sure. I guess I'm wondering, what conditions are appropriate to warrant trying biologics. Remicade has been offered to me by the gi's several times over the years, but I've always declined. I'm not sure whether the gi's by and large have rigorous criteria/treatment algorithm for determining when biologics are appropriate - except for the guy at Mayo who I saw some years ago who seems excellent. He outlined the algorithm pretty clearly except for this particular scenario that I am now faced with. But that's a heck of a jaunt to travel back to see him again. I wish that medicine could joint the 21'st century and seriously embrace the telemedicine concept.
Posted 3/2/2011 3:59 PM (GMT 0)
Let your body tell you what you need. As it comes to other peoples advice on this site, take each with a grain of salt. I am sorry about that. To each their own when it comes to this disease,
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