Does anyone else have a rectal stricture and what does your GI do about it?

[Flo]

My nephew is suffering so much due to a rectal stricture (scarring that narrows and can obstruct the passageway) that is dilated surgically every 6 months. This just causes the scarring to grow back even thicker. He is only 14 and the GI docs give him no other choice except to get the procedure more often before the scarring gets very thick. He is on Remicade and his immune system is compromised, so the surgery for the stricture is very risky. But they don't give him any other options! Does anyone know of any alternative method to soften or get rid of the scarring?

 

[DJW]

Hi Flo and welcome.

Sorry your nephew is dealing with this at such a young age. Surgery or dilation are the only ways I know of to treat the problem. What diagnosis does your nephew have?

Sending you and your nephew my support.

 

[Poppysocks]

I have a rectal stricture too. Luckily though remicade keeps the pain from getting bad. What's his dosage? I get remicade every 4 weeks. My inflammation markers are all through the roof. Maybe you should try adding imuran and tell him I change his diet. Get away from milk and beef products.

I would also stop getting it dilated because Thad just making it worse. Sometimes I just shake my head at doctors.

I am so sorry for your nephew I think dealing with this illness is one of the hardest things imaginable. We're not completely healthy and were not dead we live with sickness. It's like living in hell on earth in my opinion. Some type of purgatory or something.

 

[ILDan]

Crohn's since 1989 at age 15. Rectal strictures are the worst. My doc wants to dilate digitally (w/ his fingers) every 6 months at checkups. Sometimes he forgets, and I don't remind him.

Doc also suggested doing the "procedure" myself in a warm tub to make it easier. "Adult shops" or online stores offer several products and perhaps you could find something for him w/o letting him know the original product intent?

Feeling and dreading being digitally, anally raped at each doc visit sucks.

 

[alex_chris]

Hi Flo, rectal strictures are among the most problematic complications of Crohn's. I never had one, but had an anal fistula and abscess and now how much stuff hurts down there.

As a far as I understand the treatment options are
A. Regular dilation (surgically through ballon dilation or index finger dilation)
B. Rectal stricturplastly
C. Removal of the rectum
D. Regular (daily) self dilations

In addition to these surgical option, biologic drugs like remicade help with the inflammation that would otherwise lead to even worse scaring.

B. And C. Are options usually preserved as last resorts, which leaves the regular dilations ever few months.

Re D., What I have read about are doctors who recommend that the patient himself or herself does regular dilations which apparently works, especially if the scared part is also regularly cared for with things like aloe vera, mitomycin etc.

Here is that case about "do it at home dilations"
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About 2-3% of Crohn's patients have rectal strictures. Management of these strictures may require endoscopic dilation, stricturoplasty or partial colon resection. Distal rectal and anal strictures pose additional challenges in surgical treatment because of its location. We present 3 patients with distal rectal strictures treated by digital dilation, topical application of mitomycin at stricture site and regular at-home dilation.
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Method:

3 patients, 18, 17, 12 years were diagnosed with Crohn's disease at ages of 10, 15 and 9 years respectively. They had Crohn's disease of the ileum and colon. They were treated with mesalamine, 6-mercaptopurine and infliximab. 2-7 years after the diagnosis, the patients presented with rectal bleeding, difficulty in defecation and passing “ribbon like” stools. The rectal strictures were diagnosed on digital examination or colonoscopy. Gentle 5 days preparation done. Under deep sedation with propofol, colonoscopy was performed, fibrotic 3 mm stricture was noted at 5 cm from the anal verge. Balloon dilatation failed to open the stricture. Following this a digital dilation was done. The index finger was inserted to its base, stricture was opened to a diameter of about 15 mm and topical application of mitomycin (0.3 mg/ml) was done. Abdominal x-ray after dilation showed no evidence of perforation. In the recovery room, patients and parents were taught to do the dilatation with a 14 mm Hegar dilator, which continued at-home daily.
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Result:

Patients tolerated the procedure well. A follow up of 4-18 months showed no relapse of the rectal strictures and the stool caliber was normal.
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Conclusion:

Digital dilatation of rectal strictures is a safe treatment for distal rectal strictures. At-home dilatation by patient or parent is a safe for preventing the recurrence of these strictures. Topical application of mitomycin may have an added benefit in managing these difficult distal rectal strictures.

 

[shamrock15]

I haven't heard of in-home dilatation before. I remember my docs being concerned about perforation. How is this prevented?

I am one of those "lucky" ones who is susceptible to this, and anything that would bring relief is welcome. I do get ballooned periodically, and mineral oil has also been recommended in the past.

 

[ILDan]

I haven't heard of in-home dilatation before. I remember my docs being concerned about perforation. How is this prevented?QUOTE]

In a word, CAREFULLY. Sorry, LoL.

OK, first let's assume that your doc OKs what I'm suggesting. So here's my routine. My doc is pretty aggressive during my assault/procedure in his office (if not done in-office, done by scope). And his fingers are thicker than mine. His rough style gives me confidence that I won't overdue it myself.

First, I clip my fingernails. (As long as there's no pretense here, a good husband/spouse should always keep himself well manicured for his wife, too.) I find that a warm to hot bath helps as does a glass of wine to "put myself in the mood." Add your lubricant of choice and proceed with caution.

I think your fingers have sensitivity and allow you more control. However, I have shopped adult stores (Wifey gets in free--might as well make the trip fun.) for a tool, as I also suffer from Rheumatoid Arthritis and my hands can be worthless. On the shelves are MANY options, beginning with soft, pencil-sized diameters and tapered ends. These products have the benefit to being purpose-built, so no sharp edges and dishwasher-friendly. Avoid anything rechargeable or shaped like an animal.

I hope to God this info helps. I suppose if pressed, I could go into more detail, but more than above and I'll start to blush and my wife might get jealous. No-holds-barred for Crohn's friends, right?

All my best from another who understands. Dan

 

[shamrock15]

Can't say I'm convinced yet Dan, but it may be something to speak with my GI about. Thanks for the info!