Thank you for all the encouragement! I'm not sure I can handle any more GI than I've already seen with my own body! I will only have to decide in three years, so I'll have time to think about my...
Updating a good two years later: Life has it's challenges, but UC is no longer one of them. In some ways having an ostomy is a greater challenge mentally than it used to be and I do wish that I...
Let's imagine that I wanted to go on a trip for a couple months and didn't want to have to lug around months of supplies with me in my backpack. Are there decent long-term reusable systems?...
Reading that gave me chills. I'm waiting for the moment I'm able to fully appreciate that. It feels wholly miraculous. It will be an achievement to put on my tombstone, not my CV....
NCOT: I wish your nation the best. I hear a lot about NHS funding. Absolutely 120% yes, yes, yes. With the options that exist as of 2017, my stoma is the best that could possibly be for me. My Jpouch...
Absolutely. The next years will involve a lot of personal healing and growth from a very hard period of time....
HAPPY UPDATE (with a rough plot twist though): Improvement was slow for a reason. They made the fascial opening for the stoma too narrow during my surgery, so I basically suffered for a partial...
Hey all: Good news! I am feeling totally back to normal and the ulcer has healed. Also, I got checked by a CR surgeon who OK'ed me and my stoma. Nobody knows how I injured myself like that, but I...
NCOT: Yes, it could be a pressure sore from the stealth belt, a minor, but sufficiently traumatic blockage with fibrous food, and my flange becoming too tight for the stoma it was on. EDIT: also I am...
Hey all, I was actually going to post a happy update soon to mark 6mo of health. Last January I had my pouch removed, however after two months of agony, we realized the fascial defect to accomdate...
Kudos to you NCOT....
I'm doing pretty well. my follow-up endoscopy will be in a few weeks. There is still some pressure a little bit behind the stoma but I hope that this is no issue and generally speaking I'm doing...
The follow-up scope will be very important, also to see that the inflamed segment heals from probable ischemia. This truly could be a new page though. Honestly, while it's very disappointing hospital...
Hey guys, Wow. What a week. Over a week ago I noted that I couldn't inset my index finger into my stoma and that the symptoms seemed very mechanically associated. I got an MRE on Tuesday and after...
KS: I had a Foley in my stoma twice in the hospital. Funny, I remember the stoma nurse having difficulty getting in and said something about a "weird angle."... 3 month definitely sounds like BS....
Already have an MRE (enterography) scheduled. Might have to do a small bowel follow through. Spoke with a different surgeon who is covering for mine. He said exactly what I have been thinking "Sounds...
Thanks NCOT. I must look at the big picture. Chances are, this is resolveable (whether or not my assessment is accurate). My surgeon and GI at CC said they both expect a great outcome from my pouch...
NCOT- I'm sorry if I replied curtly. I'm just sensitive to hearing the same old "are you eating GI soft, take your pain meds on schedule, sometimes it takes more time" mantra while I drop to a BMI...
There's no way this is normal. I've had a stoma before and this never happened. My diet and the pain meds are definitely not the issue, I'm two months out now and should not be in this much pain....
I'm two months out and something really seems wrong. I feel like when food/gas reaches a point just behind my stoma I get terrible pressure, bloating, pain, and nausea. I haven't been able to get off...
Honestly, I am a little worried like NSSG. 3 months sounds like a very long time and I'm halfway there. I hope you're right, but my experience has left me with very low expectations. If thing don't...
Taking probiotics and ginger. I have been on low residue, although introducing other food hasn't really changed things. HOping it's just a matter of a little more time....
Hey all, I had my Jpouch removed (see http://www.healingwell.com/community/default.aspx?f=38&m=3263001&p=7 ) 6 weeks ago. My perineal wound is doing quite well, but I am having a lot of issues with...
One month out from surgery, 2 weeks from discharge. Improvement is slow, but I am now eating much better, thankfully. Gaining weight, pound by pound. Doing quite well with my pouching system. Laser...
Dear Mum, Firstly, it's beautiful to see that you want to have a better quality of life for yourself and for your kids. You deserve to feel better and they deserve a healthy mom. You have to go get...
What a sweet story, thank you for sharing, we need some humor on this forum! :)...
Small update: As always, my post-op is a nightmare. Some mishaps by hospital residents, but my attending's response was excellent and she made sure that things were made right. Dr. Ashburn has been...
NCOT- spot on. Had been warning them about it but they told me to eat. Since then, just high pain levels with bloating until finally I myself asked for going NPO, NG tube and agreed with them on TPN....
Thank you for the encouragement. Hit a bit of a bump yesterday and today. No stoma output. Swelling of intestines near inflamed junk jpouch may be related. As they weaned me from the epidural my pain...
Just read about it, just ordered samples. Will give my opinion but looks very promising, especially filter. I am hopeful that baseplate will have same performance as Mio....
@NSSG Thank you for the kind thoughts. :) I have what I think is a pretty darn positive update. Surgery went well. The team was able to stay laparoscopic, successfully removed the pouch without...
Dr. Shen believes that ischemia is a big part of the problem. Males have less mesentery in their pelvis (women have wider hips with more blood flow) and he sees a lot more males suffering from...
Thank you all for the kind words. NSSG: While I guess it doesn't affect the bottom line (pouch has been terrible), of curiousity I will ask my surgeon what she thinks. Personally, I think the...
Hey all, I will be having pouch removal next Thursday at Cleveland Clinic Ohio with Dr. Ashburn. I have set my anxieties aside as I feel very strongly that with the jpouch I will not have a stable,...
Sorry for delay in posting. I think budesonide is starting to improve my symptoms, for which I'm grateful. Shen said I can stay on it pretty much until op. How things are: I've been rising from bed...
TL;DR I'm having surgery to remove the jpouch and convert to a permanent ostomy. Shen was able to fix the sinus (he thinks so at least) but I still have inflammation and symptoms. I'm needing pain...
NSSG: There is definitely inconsistency between doctors. I will see Shen again for a scope soon, and I guess we will get some greater clarity then. I definitely had/have a sinus. Basically like a...
It's over 15 months since takedown. Pretty much none of that time has met my expectations for the jpouch and some of it has been spent suffering a lot. Given my continuing symptoms, about a month ago...
In regards to the issues with ostomy: Skin wise, almost anything can be solved by just changing the hardware. I remember my first 3-4 weeks with my ileo being abysmal until I finally figured out what...
This is so misleading, although so commonly said. I'm actually facing this reality right now. As a dude, I have a 25% risk of irreversible urinary or sexual incapacity if I opt for jpouch removal....
GC, Hair is a real issue. If I have to go back to a stoma, as a hairy dude, I DEFINITELY am seeking laser hair treatment. I would trim it using an electric trimmer, but it definitely was a source of...
SC, Your story mirrors mine. Symptoms at age 20, by 21 I needed my colon removed. Still graduated when I was 20, but it was a struggle. If you have failed Entyvio and alternatives like diet and FMT...
Honesty, I agree 100%. The drugs don't cure you, and if you have pancolitis, there's already over 50% chance that you won't save your colon. Let's not even talk about short/longterm side effects....
Thanks Katmom, it sounds like your daughter is doing pretty well and I hope that it stays that way. I hope she's doing well in law school. I'm considering med school, it might be a good chance to...
Just going to put out there: it may seem rough now, but have you actually talked to a stoma nurse, met an ostomate, and even tried a bag on? Because until you've done that, you can't claim to be...
I'm sorry to hear that, OM. At least you know what your son is going through and can guide him through this. I know how much it hurt my father to see this happen to me. Some of the best moments I had...
ONE YEAR UPDATE: One year ago, I had takedown. The bottom line is that I do regret jpouch and to a much lesser extent surgery on the whole. My colon's chances of survival I think were objectively...
It will be my first time meeting my surgeon again since takedown. My quality of life is OK. I take hikes, for example. I just have the runs and am frequently anxious looking for a big bush to poop...
Hey all, One year ago, I had takedown. The bottom line is that I deeply regret jpouch and to a much lesser extent surgery on the whole. My colon's chances of survival I think were objectively pretty...
Unfortunately, I'm over 10 months out and while things are better, there is pain every day and many BM's. Honestly, I think that this is just the way it is with many people. Most don't complain...