I'm the one with the 2mm stricture. It's scheduled for this upcoming Thursday. I know there are always risks and things happen but are dialations, typically, uneventful......pretty easy? I'm thinking if they do out patient, probably pretty easy. I'm having done main campus cleveland clinic. And are there usually any restrictions after for eating or are things pretty "back to normal"?
Replies sorted oldest to newest
Do you know if they are planning to dilate this in one go, vs. a series of scheduled dilations?
They didn't say. The surgeon that is doing it is not the same one that did my pouchscopy. They said he is an advanced endoscopic surgeon so I'm hopeful he knows what he is doing. I'm doing a CT scan on Tuesday at my local hospital bc the surgeon that did the pouchscopy ordered it to see if I have any others.
I was dilated in 3 sessions - 7 mm to 11 mm, 11 mm to 15, 15 mm to 18. They need to go slow or risk perforation. Perforation could mean sepsis. It's a risk to be very aggressive. I am so glad for my advanced endoscopist. Awesome doctor for anyone who needs dilation in CT:
Thank you. I will definitely ask to do in stages. Seems like they would
After you get dialated, can you write a review on here about everything you went through with the dialation and as much info as you can? I think a lot of people here would appreciate it so they can learn from you if they need to go through it too! Please and thank-you!
Good luck! Let us know how it goes and how it is.
Absolutely...I sure will.
@chili123 posted:Absolutely...I sure will.
Perfect thank-you! I wish more people would do that!
Chili,
I posted a very extensive thread on my EBDs which is there for anyone who wants to bother to search for and read it, but the link is below:
https://www.j-pouch.org/topic/...pic-balloon-dilation
Executive summary is its just like getting a pouchoscopy with sedation or propofol. Mine was done in 3 sessions during the late stages of the Covid pandemic and it's all chronicled in the above thread. I found at least a dozen other threads like that one as well.
Ctbarrister...I starting reading you experience....sounds not super easy. Glad it's all worked out for you. Had to be no fun.
Ctbarrister...what was the intervals of doing your 3 dialations? And how do they know if they are "holding"?
The intervals between dilations were around 6 weeks or so. Check the above thread and you will know the exact dates. When you go back they measure it and determine how much more you will need.
As for whether it will hold over time, it's unknown. At that time I was told I might need to be dilated in the future but it's been 2.5 years and it's holding. That might not be forever - we will see. Whether it holds depends on how your treatment is working as well. Mine is working.
Gotcha. So I don't take any meds now.....so I may end up on meds.
@chili123 posted:Gotcha. So I don't take any meds now.....so I may end up on meds.
Not being on meds is most likely why you are in this situation right now. Strictures are due to inflammation and when you are strictured to 2 mm the inflammation is obviously not being controlled, and is out of control.
Gotcha. I have my fingers crossed that they do the dialations, put me on meds and it ends up I don't have crohns. The surgeon that did my scope wasn't sure but he said due to where it's at, he thinks I have crohns. I feel like that is super complicated. I've been told by everyone else, up to this recent scope done by other surgeons, that I don't have crohns. Hoping he is wrong. Ugh. Ty for your communication......Definitely helps me and helps me better understand the process
It's irrelevant whether it's Crohn's or not. Crohn's is just a label for inflammation, same as pouchitis. Same as Ulcerative colitis. All the treatments are the same for all of the above conditions. What matters is if it's treatable. If it's treatable it really doesn't matter what you call it. You would rather have treatable Crohn's than untreatable pouchitis- right? They will never know what it is and the focus should be on treating it. Most likely it's "inflammation due to backsplash stool." Same as me.
I don't like the idea of it being my entire digestive tract so I'm hopeful the inflammation is just the pouch area....they told me i dont have pouchitis. I did the jpouch because I didn't want medicine...I declined even trying remicade...I know, that's probably silly. I have eliminated sugar and carbonated drinks a couple of weeks ago and I feel like my bowel movements are so much better. So, just curious, what do they do if they can't control the inflammation......u just get stricture after stricture after stricture....or do they do a permanent iileostomy and it fixes it?
People who can't control inflammation in their pouches usually lose their pouches and get an end ileostomy. There are a few such posters on this board.
Given your situation, continuing to avoid meds while also keeping your pouch is not really a realistic goal.
Makes 100% sense....for sure. I agree that i have to get my head around medication. What if I have crohns and my entire small intestine is inflamed....and no control? Do u know what they do? I know, I'm being extreme but this signicant narrowing and hearing the surgeon that did my pouchscopy (although he admitted he is "newer") says I have crohns....I'm more concerned that this narrowing is throughout my entire small intestine. Ty for your patience....I know I'm crazy.
@chili123 posted:I don't like the idea of it being my entire digestive tract so I'm hopeful the inflammation is just the pouch area....they told me i dont have pouchitis. I did the jpouch because I didn't want medicine...I declined even trying remicade...I know, that's probably silly. I have eliminated sugar and carbonated drinks a couple of weeks ago and I feel like my bowel movements are so much better. So, just curious, what do they do if they can't control the inflammation......u just get stricture after stricture after stricture....or do they do a permanent iileostomy and it fixes it?
Do not feel silly, I decline biologics (Remicade) because I was tired of medicines too. Your not silly at all
@chili123 the newer terminology is shifting to "Crohn's-like disease of the pouch" for most J-pouchers, and it generally doesn't affect the whole GI tract. In any case, imagining the worst-case scenario is terrible for your disposition and almost always turns out to be wrong. As CT wrote, even if the findings are more Crohn's-like, your doctor will simply find a treatment that works for your condition. A stricture is generally at a single location, sort of like a rubber band around the gut, and you'd probably be in rough shape right now if you had multiple untreated strictures. Yes, medication is likely to be your best way to minimize the risk of a recurrence. I hope your dilation is easy-peasy.
Thank you everyone