I sent a note last week, responses to your first note, and wasn't sure you got it. Let me know and I can resend. I have a stricture right above pouch, just discovered, and am one of those in determinant UC-crohns patients. I am getting blockages and am treating with red wine, full bottle usually in a very hot bath or Knudsens Just Cranberry juice, very different from other cranberry juices. I'm supposed to see a surgeon on this when I get back in town in Jan.
I hope Becky is doing better and am sending good thoughts her way.

Jeane, not sure what her own surgeon thinks (you both see the same one) she will see him as sonn as she comes home 12/15.

Clouseau,
Yes, I got your email, she doesn't have a tub, just a shower. She drinks white grape juice and does all the other stuff, heating pad, walking, etc. The stricture she had at the top of her pouch is gone, she had reconstruction in May. This is up above about 6" above her pouch in the small intestines that is why they are now saying crohns. This is horrible news.

Thank you both for responding.

jeane, doesn't CT Barrister have a similiar situation?

quote:

doesn't CT Barrister have a similiar situation?

My situation is similar, but involves the area just above the pouch inlet. That area is narrowed, apparently due to thickening of the bowel as a result of inflammation from "fecal stasis" or pooling of feces above the pouch. It's not officially been called a stricture. I have had CT and MRI Enterographies showing that there has not been much change in the thickening and resulting narrowing of the bowel from 2008 until present date. I am taking steroidal anti-inflammatory meds (Entocort) and antibiotics and the situation is being monitored. I have been told that I am at risk for blockages and obstructions if it gets worse, and when I tried to go off antibiotics cold turkey this past July, after about 10 days I felt as though a blockage was developing.

Since then I have stayed with Entocort/rotating antibiotics/Pentasa regimen of meds and I have been fine, no worse than I have been in the past 17 years, and probably better overall in terms of how I feel day to day. I am going to be scoped again in 2013 and we will see if there is any progression in the thickening of the bowel above the inlet.

I am very on top of taking fiber supplements so that things can be evacuated smoothly with hopefully no pooling. I am also trying to avoid eating big meals, which I have been guilty of doing in the past and I suspect this may have been causing or exacerbating the issue. I am a major foodie and belong to dinner clubs etc. so I need to try and calm down but when I get inside a restaurant and look at the menu I usually get excited. So I am working through that as best I can with the portion control, but it really is not easy.

beckysmom, I am very sorry to hear of your daughter's situation and other than what I have set forth above, not sure what else can be done. However, let's hope that maybe things will calm down as usually the adhesions happen right after a surgery and then things calm down. I had a bunch of blockages right after my original surgery and then none in the past 19 years, just a few semiblockages that resolved on their own with no NG tube or surgery.

Thanks CT. She had a full blockage with this stricture, ending up in the er and then scoped with a drain leading up to above where the stricture is to drain things out. It will be removed when she can come home. The ct showed a complete blockage also. Because it is 6" above the pouch is the reason the GI is saying crohns.

They are trying her on pudding now.

Our heads are spinning...biologics would be extremely risky given her past with the pcp, and yet another surgery????

Thank you.

beckysmom,

It would be interesting to compare my CT/MRI with your daughter's, because the narrowing sounds like it is in the same area, but I am sensing hers is perhaps more advanced as I am not getting complete blockages, YET. I was warned if things get worse, I could be going down this road.

Crohn's was mentioned to me as a possible diagnosis by my present and ex-GI, but neither believes that to be the case, because the pattern of inflammation in the rest of the ileum is not at all like Crohn's. In addition to that, I have never had fistulas or any of the other usual manifestations of Crohn's. So the theory is that somehow fecal matter is pooling above the pouch and that is what is causing the inflammation. Some other members who PM'd me mentioned that this could eventually become a surgical situation if I start having blockages. But that has not happened yet.

I should also note that I have a history of strictures in other body channels. I had a urethral stricture that was surgeried when I was about 10 years old (was causing UTIs) and I also had to have one of my sinus passages surgeried in 2000 due to my sinuses not draining properly and causing sinus infections. At the time my ENT surgeon told me it was one of the smallest passages from the sinus to my throat he had ever seen and after that surgery the sinus infections stopped. Just was not draining properly.

I don't know if this genetically ties in somehow, or if my pouch inlet needs to be widened. But I am told that the narrowing of the bowel is due to thickening from inflammation which, at least at this time, does not seem to be getting worse.

In your daughter's case, if adhesions are the culprit, I had 4 adhesion related blockages right after surgery in 1992 then everything calmed down. I don't know whether she has had sufficient time to calm down or not, the doctors I think would know the answer.

I wish her luck, it sounds like a not so fun problem and the same thing could possibly await me in the future, but let's hope not.

We were told at CC and before this happened in Chicago, where she is now, that she had ischemia and since the pouch redo she should be fine. Now this happened.

She just spoke with the GI and is still in the hospital. They are going to try pudding and liquids and pull the drain they put in the strictured area. This is not adhesions. He basically told her they are just doing this to get her by for now until she sees her surgeon on 12/17 when she gets home. He feels she will need surgery very soon, they were going to do it there but her surgeon wanted to see her, but her surgeon also has to take a look and see what he thinks.

I hope she doesn't have to have another surgery.
Hope you don't either.

What an awful time of the year to have all this happening. Anyway, good luck and let us know what the surgeon thinks.

For clarification, a stricture is different than narrowing caused by inflamed and swollen mucosa or deeper bowel wall layers. They can both be signs associated with Crohn's. However, a stricture is a ring of scar-like tissue that forms within the bowel wall. If it is at the anastomosis site, it is considered surgery related, but if it is remote in location from any surgery, it raises suspicion of Crohn's. Of course, you can have both a stricture AND thickening of the bowel wall from inflammation, and the stasis that the stricture causes can lead to that inflammation.

I'll have to do some research on it, and will post later if I find it, but at least it used to be that one of the reasons they liked to avoid intestinal surgery in the presence of Crohn's was because of the tendency or risk of the surgery triggering Crohn's disease upstream from the surgical site. I don't know if that is still the belief.

So, if the concensus is a Crohn's diagnosis, while I am sure it is a huge disappointment, it may actually be a benefit as opposed to a horror, I say that because her problems exist no matter what it is called, but a more proper diagnosis may lead to the right treatment. I don't know that prior infections would preclude any particular treatment, but being on drugs that can reduce the immune response would mean she needs to be more careful.

Of course, if ischemia is still an issue, that throws another factor into the mix. I wish I could say that this sounds like just a blip and everything will be fine, but she has had so many complications without a good resolution, I am afraid this is not the end of it. Hopefully, her doc can do a balloon dilation and that will set her straight.

I would be wary of any more cutting procedures...

Take care,

Jan

So sorry about your daughter. I had strictures at both ends and always had chronic pouchitis with scopes and biopsies always showing UC. The last scope in April showed a narrowing also inside the pouch and the pouch had gotten bigger. I knew the pouch had to go but hoped it was just UC. Sadly they found Chrons when they took it out this summer.

I know this not much comfort because your daughter wants to keep her pouch Would biologics help the strictures?

OK, I did a bit of looking for info, and below is a link to a very comprehensive article about Crohn's relapse after intestinal surgery. Basically, it is more the rule than the exception. Mesalamine may help prevent some relapse, but the best results are seen with drugs like 6-MP and the anti-TNF blockers (biologics). The article explains disease types and breaks them down to the presumed risk of post surgical relapse. It would sound like Becky's stricture is small, with large ones involving 10 or more centimeters.

It is a lengthy article, but an interesting read and does explain things well (if you can wade through the medicalese). Anyway, if this IS Crohn's, it would explain a lot...

Hope this helps:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886401/

Jan

Thank you CT and gmarie.

Thank you Jan for the information.She originally had the j pouch surgery in '03 because they were afraid (and so were we) of using any biologics due to her severe situation with 6mp and her getting the PCP Pneumonia. The GI here thinks that her getting the PCP was more the high dose steroids 60mg medrol more than the 6mp dose 62.5mg or the combination of the 2 at the time. Whatever it was she was extremely ill and almost died.

Before this pouch revision in May, she had a strictureplasty at the inlet to her pouch in '08 and before this revision we had discussed the scary possibility of biologics rather than another surgery. The GI had said that the biologics, remicade & humira could actually close the stricture and she would still require surgery. Also, this was with everyone saying it is NOT crohns and thinking it was ischemia. Shen, was the first to diagnose her with ischemia and others have followed.
So she has the revision (which they say that looks good) but now has this stricture 6" above that area and they thought they may have to do emergency surgery the other day. This is all an hour north of Chicago at a local hospital near her college.

For now, she is out of the hospital and is trying to get through finals and then will be home, NJ, on Sat and see her surgeon Monday, 12/17.

I do not think it is a good idea to do anymore surgery, and I'm sure he wouldn't suggest it either unless it was absolutely necessary. How to stop that from having to happen? Risky as it is, if she would even consider humira, etc. would it close the stricture up and then she not only took a chance with the biologic but now has to have surgery and then that could open up a new problem IF it is crohns????

Here at school, the ER she went to, the GI said she should just have an ostomy. But why pull the pouch? Is that going to cure the possible crohns? NO.

These are all the questions and many more and unfortunately it seems like no one has the best answer, it's just a crap shoot....and it is with my daughter's life.

beckysmom,if you need information on strictureplasty i had it performed on me at weill cornell medical center in ny by dr sang won lee due to the fact my i had a terrible stricture in the anus.The surgery is quite painful but after 5-7 days pain and soreness dissipated.I hope this gives you more information and i hope your daughter feels better.pauln

Pauln,
Thank you. My daughter had a strictureplasty in '08 at Weill but then she needed a pouch redo, due to the stricture at the inlet, in May 2012. She seemed to be okay after that surgery and getting over the complications with it, but in Aug she had a blockage and everyone thought it could be adhesions. Then a blockage again in Sept, and Nov and now this past one would not resolve on it's own at home.
Everyone is waiting on the biopsies now so we have no idea what is down the road.

Thank you.