My daughter saw a surgeon yesterday and he suggested a strictureplasty for her striture at the inlet of her j pouch. He said it would be safer to do an incision rather than lapro. He said she may have a temporary ostomy or not. She has had two dilations, one last summer and one this summer. She wants to know from the group is a striture something she can just live with and not get the surgery? She is afraid of getting the surgery because of all the complications she had when she had the j pouch surgery. He said this would give her a better chance of staying away from remicade and other immunosuppresants since she almost died when she was 10 when she got PCP while on steroids and 6mp. He said normally she could live to a ripe old age before she would loose her pouch but with pouchitis and stricture problems she is looking at 5 - 10 years minimum before she would have to loose it. She is going to get another opinion before the surgery. Right now she has some cramping once in a while, she goes about 8-10 times a day and 2 times over night, rarely with accidents over night. Could she just limp along with the stricture and not have the surgery or by not fixing it will it get worse? Is this surgery safe? He said 5 days in the hospital.

This message has been edited. Last edited by: beckysmom,

Maybe you should get a second opinion about this. If she's only had 2 dilations at 1-year intervals it seems her stricture isn't as severe as some. But since I've never had a stricture I'm not the best person to address this.

Did you do a search on strictures here on the site? Or strictureplasty? You might do that to get more information and also get names of people who've been through it so you can PM them with questions.

Good luck!

kathy

Stricture of the pouch inlet is a bit different than an anal stricture. It can cause more problems and be more difficult to manage. Still, the fact that her first dilation offered enough relief for a year before it had to be repeated, is good news. However, I would suspect that with the second dilation, the surgeon did not get as good results as the first time, or he probably would not be suggesting stricturoplasty.

She should not equate her experience with her j-pouch surgery with this one, as the circumstances are completely different. I had many complications with my j-pouch surgery, but with my subsequent hernia repair and more recent adrenalectomy, things went quite well.

Any surgery has it's potential risks, so safety is relative and should be weighed against the potential benefits. It is all about quality of life and unless she is severely blocked, she could postpone surgery for quite a while. Still, this is a reasonably simple procedure. I think there is something else besides just this stricture, especially since you are talking about Remicade. Has she been diagnosed with Crohn's? If so, stricturoplasty is more likely to be in her future.

A second opinion is an excellent idea.

Jan

Jan and Kathy,
Thank you for your answers. The surgeon that did the dilation last time and this time is not the same surgeon that is recommending a stricture plasty. Her j pouch surgery was in 2003 and her first blockage was in 2007 and she did well after the dilation, which was much more narrow than this 2nd dilation. The 2nd dilation she had in July 08 and she was bleeding for about 10 days afterwards and the surgeon said to get bloodwork done to see just how bad she was bleeding. Her hemoglobin went from 13.2 to 11. So at that time I talked to some j pouchers and decided to give the NYC drs a visit. My daughter saw a surgeon on Monday who spoke about the strictureplasty, but has never scoped her and he wants to scope her first to see if he can see anything else going on.

As far as Crohn's and Remicade, the GI dr. that works with the surgeon said if my daughter is on Pentasa from her GI dr. in NJ then it is probably Crohn's. Then after the bloodwork came back and her b & b12 levels were very good, that she did she said it's probably not Crohn's just bad pouchitis with a backwash causing the stricture/ narrowing. Then she did a promethius test that said negative for IBD but had a high ANCA Elisa, so she is saying again it may be Crohn's. She said the medical approach would be Remicade for UC or Chron's.
I called a CR surgeon we consulted with 10 years ago (when we were told she may eventually need surgery) and we couldn't see him for a while so we are going tomorrow morning to speak with his associate.

My daughter and I were so taken back by the NYC surgeon visit on Monday and 2 weeks ago with the NYC GI dr. She wants to speak with someone asap. She feels that there is no urgency to do this right away, and I think she knows her own body.

Jan, what do you think about the Promethius test? What about yearly or twice a year dilations if she could get by with that? It just sounds safer than another surgery and this one would not be done laproscopically.
Thank you.

First of all, without scoping and full work-up, the surgeon is basically just "thinking out loud." My experience is that doctors tend to talk in worst case scenario frame-works. That way, you have your shock up front, and are appropriately relieved when you find out that less invasive treatment is actually needed. (Sort of like when the orthodontist warned my husband that he may need his jaw fractured to be able to do proper orthodontia. Turned out he only needed regular braces.)

Just because she is on Pentasa, it does not mean she has Crohn's, since that is a treatment that is used for antibiotic resistant pouchitis and cuffitis maintenance.

I think the jury is out on the Prometheus IBD serology, even though they strongly stand behind their new matrix as being very reliable.

I also think that the fact that the stricture was not as narrow the second time around after a full year means that she probably will not need surgery and it is reasonable to anticipate occasional dilations. I also would suspect that they would become less frequent as time goes on. But, if this does turn out to be Crohn's, it's any body's guess how this will play out, since the course of Crohn's is unpredictable. I see no reason to rush into anything if she is functioning well at this point. There is a concern about her bleeding following dilation, but it did not fall to the point of requiring transfusion, so that is good.

Jan

Thank you Jan, you always are so knowledgeable AND compassionate with your delivery of your information.
We saw another surgeon today who just fit my daughter in and she said my daughter is in good hands, stay with Dr. Milsom at this time and see what he says after the scoping.
We are going to take a "deep breath" and try not to think the worse and see how this turns out after the scoping on the 12th. Thank you.

Very good news. I know that Dr. Milsom is very highly regarded by his patients and his experience with complicated j-pouch issues is very good also. I do not think he would steer you wrong or lead your daughter into unnecessary surgery. I think it also was a bit premature of the other doc to tell you that her pouch would have a maximum 5-10 year lifespan without surgery.

The bottom line is that unless there is a bowel obstruction or perforation, surgery is elective, and your daughter and you decide when the time is right. The surgeon can only recommend.

Jan

Becky's mom,

I had a stricturoplasty following two dilations in a relatively short time frame. But as Jan indicate there is a difference between an anal stricture and one at the inlet, I have no idea which I had. But it was a wonderful month of feeling the effects, then I started getting the symptoms back of the stricture returning. tough stricture!

Mine was a one time only deal, as he does not want scar tissue to build.

Two years ago I had a CT scan which revealed a narrowing at the inlet of my pouch. I had been having very painful symptoms of a stricture and was not surprised by the finding. My GI, Dr. Achkar, got me into my surgeon, Dr. Tracy Hull, at Cleveland Clinic, that same day. She scoped me in the office and said the inlet was almost completely closed by the stricture. She did not want to do a balloon dilation as she has had to fix too many intestines by inexperienced doctors doing this procedure. Within a week, she did the strictureplasty surgery on my pouch inlet. Two years later, I feel great from that standpoint. I wish I would have pursued the cause of the constant pain I was having sooner. I would highly recommend this surgery. I was indeed in the hospital about 1 week, but I have a very sleepy bowel after surgeries. It in no way compared to my j-pouch surgery. I hope this is a viable option for your daughter and will give her some relief!

Thank you for the stricture information. 2 weeks until her scope, so we should have more information by then.