Congrats Byebye! I greatly appreciated your help, advice and encouragement while I was going through my j-pouch surgeries :) Best wishes for continued health....
Congrats on getting through the first step. Keep walking, eating, sleeping, building up your strength as best you can. The output will thicken up a bit -- my "best" was the consistency of applesauce....
Hi SC - I had two step robot assisted lapro jpouch surgery at the Mayo clinic. My second step or takedown was 6 months ago and my life has dramatically improved from my UC days. Unlike ByeByeUC, I do...
This is the first I've heard of forming the j-pouch on the second of two surgeries. There is a lot of stapling involved with j-pouch formation and the vast majority of surgeons want the j-pouch to...
Congrats NSSG! I remember us going through takedown around the same time last year. It was nice to go through that period of time together in a way. I'm happy to hear you are doing well! Similarly,...
I am so grateful for my jpouch surgery. 4-5 non urgent BMs a day, sleep through the night, no bleeding, no meds, I eat whatever I want. Best of luck with your journey....
Good for you! Surgery is scary and tough but that's what it took for me to get my life back. Best of luck....
Congrats! Glad to hear all is going well :)...
Telha, I had my colon removed due to severe UC and now have a j-pouch. I am very happy with my decision to get a j-pouch and have not experienced any complications or issues; As you'd imagine, most...
I found a belt helpful when I had my loop ileo bc it anchors the seal. The belt doesn't apply pressure on the stoma -- if anything, it distributes the pressure from the weight of the ostomy bag...
I took oxycodone and ibuprofen for the first week after step one (which included j-pouch creation). My home nurse put me on a schedule where I was taking something every couple of hours to get ahead...
Hope you find the surgical consult informative. Similar to Marianne, I am a happy j-poucher. I'm three months out from the final step and sleep through the night, go approximately 5 times a day...
Fortunately (for me) I did not experience anything like that. I would get strong cramping/jpouch spasms that would spontaneously occur and then subside and the perianal skin would get a little raw if...
What kind of pain are you experiencing? Is it cramping, rectal pain that gets intense and then subsides? Or is it a dull, constant pain? Your thread title is "J-pouch incontinence" and you don't...
I would have some minor leaking at night. I am a very deep sleeper and was told if those muscles are relaxed or you pass gas in your sleep, it's not unusual for there to be some leakage especially in...
UCmas - to clarify, I had more medical options to choose from (I never tried Imuran, Simponi, Entyvio, Xeljanz, etc) but opted for surgery. I agree with your thought process as evidenced by my...
Hi UCmas, I was asking myself your question for years before I decided to take the plunge and go through the j-pouch surgeries. I took Remicade and 6MP for a couple of years. Unfortunately, I still...
Hope it improves soon. I LOVE really spicy food and have been eating it since about 3 weeks post-takedown and have no issues. I still use a bidet (when convenient) and calmoseptine cream 2-3...
100% agree with Marianne. Best of luck....
Marianne and NSSG - thank you both for sharing your experience! I loved reading your stories and felt better prepared from a mental standpoint going into my surgeries. I plan on keeping my blog up to...
That's probably because most j-pouchers are busy living their lives and not posting online about UC... The surgery has a very high success rate. I'm grateful for those veteran pouchers who continue...
I'm sorry to hear about your daughter. I know this disease took a toll on my parents, especially when I was first diagnosed at 20 yrs of age and had a pretty horrific year. Anyways, eleven years...
The miralax/gatorade prep is much easier to down than the golytely. The only time I had an issue with it is when I was prepping for surgery so also taking a bunch of gut specific antibiotics (on an...
From my own experience, Mayo is absolutely tops. Can't recommend them enough....
Very happy for you :)...
I had psoriasis and thinning hair (likely due to Remicade and 6mp) before surgery. I'm about 7 weeks out from takedown and my skin is now clear without meds and my hair is thickening up....
I assume your j-pouch surgery will be a three-step process. It's common for people who are going through with the three-step to be on prednisone at the time of the first surgery. You will be able to...
Important to note that cyclosporine isn't a long term solution. More power to people who are willing to undergo clinical trials but I didn't believe I would be doing myself any favors by...
Thanks :) Hope you both are doing well!...
Hi all - I just updated my j-pouch blog in case you are interested in reading about takedown. http://fyouuc.blogspot.com/...
Why wouldn't a reversal be possible? They remove the rectum so it doesn't really matter how damaged it is. Mine was in a terrible shape. It sounds like you should talk to experienced colorectal...
I would eat as healthy as possible (organic, mostly plant based, all natural foods) when I was not flaring, but when I was I would switch to a soft/low fiber diet....
Congrats lonesurvivor! Glad to hear you are doing well....
I don't understand what value you think you're attributing by attempting to draw an over-simplified metaphor for a system you don't understand. While I would be happy to explain the basics of how...
Then life is really hard, whether or not you have UC, and whether or not you need to have surgery. You seemed to miss the valid points NSSG was making. Top facilities in the US take most insurance...
This isn't true for me either. I tried Humira first (while on 6MP) and my flare continued to get worse. I switched to Remicade (while continuing the 6MP), saw significant improvement over the course...
I agree with Keith. Calling it a lottery infers your results are up to pure chance when there are ways to mitigate risk, like choosing an experienced CR surgeon at a top facility. When I made the...
timras, I am four weeks out from my takedown surgery, so I've been using my jpouch for about a month now. Similar to Marianne, surgery has been a big relief for me. Even though I am in the early...
I didn't have any issues drinking alcohol with my loop ileo....
I'm good! I'm actually amazed at how well the transition has gone. I'm not spending as much time as I thought I would in the bathroom and I've learned that I don't have to go to the bathroom every...
This looks good! Mine still has a small scab on it. How are you doing?...
Congrats on your outcome and thanks for sharing your update! I had robot assisted jpouch surgery as well and it has exceeded my expectations. When I first got out of the hospital after takedown, I...
Humira and remicade can cause or trigger paradoxical psoriasis. You may want to meet with a dermatologist; mine was helpful in getting it somewhat under control. But I have seen the most significant...
I started to take 6MP after the asa drugs weren't enough. 6MP is a generic immunosuppressant, commonly used as a maintenance drug for UC, taken orally once a day. It gave me several good years of...
I experienced intense headaches while on Humira. And, unfortunately, it didn't help my symptoms at all. My flare actually became worse after I started it (while on 6MP) and had to go back on...
Glad to hear you're doing well! Those other issues should normalize as you recover and regain strength....
I would err on the side of caution. I didn't have any blockages or issues after my first step but I pretty much stayed on a soft/low fiber diet for the first 6 weeks. It's really not worth the risk....
Have you tried drinking kefir? That may be helpful....
Yes -- for me this was a surprisingly easy part of the pre-takedown testing. I was concerned because, like you, I wasn't able to hold in enemas well (when I had my colon and rectum). I blame this on...