Heya,

Has anyone had dilation on a stricture??? or only surgery? 

Apparently I have a nasty stricture (the size of a pinhole, 5cm above my jpouch opening) that is highly ulcerated and seems to have a fistula working its way around it somehow (which explains why I am still able to eat and poop. yeah!). It took them a while to diagnose this; I've had terrible anemia for past two years and they couldn't find source. Seems the ulcers are the culprit, but they cannot work on healing the ulcers without first doing surgery to fix this stricture, as they are worried fixing ulcers, will "heal" fistula and leave me with pinhole size gut. I am so SOOOO not interested in having more surgery (I feel like I have PTSD from the other surgeries, particularly the 2004 when my intestines twisted, burst and necrotized inside me, flooding my abdomen and plural cavity with toxic septic fluid, which they misdiagnosed for 14 hours in the waiting room, leading to 6 weeks in the hospital, gut -resection, drains, tubes, catheters, lung surgery... very unpleasant). Here are my questions:

1. I want to try and do a balloon dilation instead of surgery. Anyone done this? I have been working very hard with alternative stuff and feel have worked wonders on the colitis/ crohn's/ ulcers (whatever you want to call it). I am hoping the "pinhole" might not be so tiny if they were to look again? Am I crazy? Has anyone had dilation on a stricture??? Last scope (with special double balloon) they could not even get a guide wire up the stricture, it was so narrow. But it is only very short. 

2. Surgery begets more surgery? Thoughts? They want to do a full open surgery to remove stricture, ostomy bag for 2 months, then close that in a second surgery. It is all a bit complex because stricture so close to opening of j-pouch and the thought of compromising or losing the j-pouch terrifies me!!!! I just really don't want more surgery!

3. I have a 2 year old (fought very hard and had a vagina breech birth because I thought would be safer than having more abdominal surgery. trying so hard to avoid more scar tissue! only to be told need more surgery, ha) . I want to have another kid (we have embryos on ice because of fertility problems). How long do you have to wait after surgery to try tossing in those embryos? 

Thanks! Jenners

 

Original Post

Hi Jenners.

I had a stricture in about the same exact place as yours. I had it dilated twice, but it ended up that the stricture closed due to Stelara. Also, the dialation stretched the stricture, but structurally the stricture dipped into a U shape because the small bowel that strictured could no longer hold up its original shape to the point where it was hard for food to pass through. I’m not sure if you also have ulcers in your j-pouch. For me, I was also ulcerated throughout the j-pouch that changed my diagnosis to Crohn’s disease. I had my jpouch and stricture removed last year and am back to an ileostomy. I would say that the success rate of balloon dialation is very slim. Balloon dialation for the small bowel in itself is very risky in comparison to the large bowel because of how much thinner the bowel walls are.

I’m surprised that the doctors are going to try to remove the stricture only. My doctors over here said I had no choice but to have my j-pouch removed, because of the where the stricture is at that there wouldn’t be enough blood flow to the j-pouch when they cut and reconnect the small bowel to the beginning of the j-pouch, thus basically killing my j-pouch. I would get a second opinion because if it fails, you might have to get a 3rd surgery to remove your j-pouch. 

This is just my experience. I spent about 5 months in the hospital for this whole ordeal, but I am finally able to live life again with an ileo. Please, do not be scared of going back to an ostomy. It’s not the end of the world.

I wish you the best of luck.

-Rina

Jenners, this is a tricky enough question that you might want to get a second opinion. I’m skeptical that your “alternate stuff” actually worked wonders, but the inflammatory problems can certainly fluctuate over time, sometimes getting better, and sometimes getting worse. In particular I think a second opinion could help with the surprising advice not to treat this medically, in fear of healing your currently-helpful fistula. If fistulas healed so easily we’d have a lot fewer people posting here. The surgical path forward is also complicated. I hope you can find an approach that you’re comfortable with and that works well for you.

RinaJP posted:

Hi Jenners.

I had a stricture in about the same exact place as yours. I had it dilated twice, but it ended up that the stricture closed due to Stelara. Also, the dialation stretched the stricture, but structurally the stricture dipped into a U shape because the small bowel that strictured could no longer hold up its original shape to the point where it was hard for food to pass through. I’m not sure if you also have ulcers in your j-pouch. For me, I was also ulcerated throughout the j-pouch that changed my diagnosis to Crohn’s disease. I had my jpouch and stricture removed last year and am back to an ileostomy. I would say that the success rate of balloon dialation is very slim. Balloon dialation for the small bowel in itself is very risky in comparison to the large bowel because of how much thinner the bowel walls are.

I’m surprised that the doctors are going to try to remove the stricture only. My doctors over here said I had no choice but to have my j-pouch removed, because of the where the stricture is at that there wouldn’t be enough blood flow to the j-pouch when they cut and reconnect the small bowel to the beginning of the j-pouch, thus basically killing my j-pouch. I would get a second opinion because if it fails, you might have to get a 3rd surgery to remove your j-pouch. 

This is just my experience. I spent about 5 months in the hospital for this whole ordeal, but I am finally able to live life again with an ileo. Please, do not be scared of going back to an ostomy. It’s not the end of the world.

I wish you the best of luck.

-Rina

Heya, this all sounds so hard!  5 months in hospital sounds awful!!! Thank you so much for letting me know about your experiences. I do have some ulcerations in the jpouch, have been treated for a lot fo "pouchitis" over the years. Now seem to be changing diagnosis to Crohn's because found ulcerations further up small intestine too. Stellara seems to be a drug for crohn's? So this made your stricture worse? The doctor suggesting the surgery did indeed warn of the difficulties with bloodflow to the jpouch, and that is why would do in 2 surgeries. He said if there was not adequate bloodflow then they would reconnect the jpouch to the intestine in another spot. It all sounds quite complicated (obviously) and with very uncertain outcomes. 

yes, I remember after being very ill when I was younger that having the ileostomy bag was quite liberating! I recall being at a party thinking "wow! I am out! At a Party! Like a normal 20 something!!" But currently I feel really good. I am getting energy back, I have pretty good feeling guts, poops, and an active life. So, the idea of having surgery feels like such a weird thing to do? It's tricky to explain I guess. My experience of surgery is a mixed bag (no pun intended) of it saving my life and also making it very complicated and painful. 

 

Hi Jenners. 

In my experience, it’s only a matter of time when crap hits the fan and all hell breaks loose if treatment doesn’t go well. I suffered about 3 years with trying to deal with the ulcertions in my pouch until last year when my inflammation exploded and landed me in the hospital for 5 months.

Stelara is a biologic. When on any biologic with a stricture, even with dialation, the stricture will close back up.

My surgeon here was adamant that they couldn’t save my pouch because of poor blood flow if they only cut out the stricture. It was for the better because it just ends any complications. I’m pretty sure down the road I would have needed to have the pouch excised anyways. It jist saves me the pain of worrying about future complations down the road. Even when the pouch did come out, I still had ulcerations throughout my pouch even though I had already diverted with a loop ileo for about 4 months.

I honestly would go into the surgery healthy because I now have other complications that arose after my surgeries. Though, this underlying complication might have been there all along and just reared its big head after my surgeries. To be honest, I think the surgeon waited too long to do the surgery for diverting my pouch, but that was because of a long wait list. I hope that doesn’t happen to you. 

The surgery of only taking out the stricture seems like a very risky surgery, so I would ask for a second opinion. If you think it’s worth a try to save the pouch, go for it. However, just know that a lot of surgeons don’t know what they are dealing with until they open you up.

I wish you the best of luck.

-Rina

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