Hi All,

I'm just writing because I am so very frustrated!!! In 1992 I was diagnosed with ulcerative colitis and suffered 5 years with the disease. Of course there was all the fun that comes with that disease- prednisone, Asacol, 6-MP, pain, not to mention the copious amount of trips to the bathroom!!!

In July 1997 I had Step 1 of my j-pouch surgery and in October 1997 I had my reversal. It was good in the beginning, but as time went on I had complications. I had fistulas and the biggest problem was my anal stenosis. I kept going for dilations, but time in between each procedure was becoming less and less so it was recommended I seek out surgery for a possible j-pouch redo. 

So on January 10, 2018 I had my j-pouch redo surgery!! I am feeling so upset that I would have to endure this hell twice in my lifetime! I would love to know if others have had this experience?  Also, this time around I am having THE WORST ostomy leakage issues. 

I guess I just would like to hear from someone who can provide some words of encouragement because at this point I'm feeling depressed!

Original Post

Unfortunately i cannot offer you advice but i can tell you I am  in the same position you were prior to your redo and understand your frustration.  I.have severe anal stenosis w ulceration at my cuff and in my anal canal and have been prolonging the inevitable redo surgery.  

I would try and remain optimistic.  If the surgeon has corrected the anal stenosis and you have to endure a few more months with the ostomy it will be well worth it in the end. I know how frustrating a leaking  ostomy is as i dealt with that during my first takedown as well   It’s also frustrating to deal with all the complications and pain that have led you to a redo surgery  

I wish you the very best and commend you on your bravery to address your issues as I have not worked up the courage to face two more surgeries to hopefully correct my ongoing anal stricture and stenosis.  

Please keep us posted as to your progress. You are still pretty fresh out of your surgery. In time i hope your ostomy will cooperate and you will be feeling much better.  

Thank you so much Jeane for your response, I really appreciate it. Time will definitely help in this situation, but right now it's moment to moment. Sometimes keeping up a brave front is easier said than done. I will try and remain optimistic as best as I can. 

As for you and your situation you will know when the right time will be for your surgery and which type of surgery you want. I wish you the best of luck as you move forward in your process- it is not easy!! 

Thank you.  Unfortunately it is a long road with a lot of pain and suffering for those with failed surgeries. I hope this one works for you and you are soon off and running with this period behind you as just a faded memory! 

Hi Library Lil

Just to encourage you that I had a few surgeries and a revision of my pouch due to several abscess ! Had 1st pouch from 2009 to 2014 with an ileostomy! It was supposed to be reversed in Ottawa but then my surgeon said it was not possible anymore! Said I had to live with it! I sought a consultation with a surgeon in Toronto as all the other surgeons in Ottawa and Montreal refused ! I had a 75 % chance that it would work so I took the chance and ended up in hospital for 5 months with an ileus paralyzed intestine! By April 2015 the plumbing started working cane back to Montreal after a horrendous stay of scuff twice Christmas holidays in hospital with family and friends all in Montreal! Got through it and so took a few years for dust to settle! Always had diarrhea and now for last 3 months constipation anal fissures and pelvic pain which is controlled with narcotics! It’s been a rough journey but stuck to my gums that I wanted no ileostomy! So hang in there and to let you know I had 2 jpouches and then surgery for anEUA exam under anesthesia in feb 2015 and emergency surgery a week after as spiking temperatures and screaming in pain! They found nothing except scar tissue which he cleaned out! Then had blood transfusions and TPN ! Went through hell but hung in there telling myself I’m going home with no ileostomy! Have faith and day by day! Good luck!


Thank you for your response. I am so frustrated for you and your situation!! It sounds much worse than what I am going through. This disease is not for the faint of heart. I was fortunate to have my original J-pouch for 20 years- it wasn't perfect, but pretty functional. Patience is not always easy, but a must. Day by day is the best advice- sometimes moment to moment. I hope you continue to remain strong! 

It’s been awhile since I’ve been on the site... but I’m glad I did today because it sounds like we have very similar situations.

I had my first 2 step jpouch in 2008; after years of suffering with pain, pressure, incontinence, frequency to name me a few... I was told that I would need to have my pouch repaired. This time; a 3 step process and ileostomy for 9 months. My first surgery was 12/21/17.

like you; i was devastated but am also hopeful that after these 9 months my qualifying life will be drastically improved.

also like you; I am having issues with my appliances and leakage. Some days I have to change my bag twice due to leaking. The advice I got from my team of wound/ostomy nurses is

-change appliance at least every other day in the beginning

-practice the “double crusting” method which is apply stoma powder; pat with skin prep and repeat. Allow skin to dry completely before applying wafer (I prefer to use a 2 piece system)

-make sure you are using the right wafer... depending on the size of your stoma and how much it protrudes from your abdomen; a convex wafer could work better to prevent leakage

- also, the size of your stoma will determine the best size of wafer and flange... I was using 2 and 1/4 but after taking to Hollister rep today she said because my stoma is less than 1 inch I should be using a smaller flange which will help reduce leakage.

-I’ve found it really helpful to call the ostomy companies and ask for samples...we will all have an appliance and brand that will work better for our individual needs. Also; the aggressiveness of the wafer varies on product manufacturer....so it’s worth trying different brands

i hope some of this helps!! Just try to remember that it’s temporary and you are stronger than you think! I know in the moment it’s difficult to believe it... but have faith that it will get better. 


I really appreciate your response! It is helpful to know that I am not alone in my situation. I am sorry that you are dealing with similar crap (pun intended). Haha

Since I first posted, things have improved, the leakage has stopped. I had oozing from my incision which loosened the edge of the wafer which caused the leakage. I was able to get medi-honey for my incision and that appears to be better as well. Also, I have gotten a few samples from Hollister, but it was not an easy process. I was on the phone 45 minutes when I finally said I would like to speak to a supervisor. It was only then they were magically able to send a few samples. 

I am coping with the ileostomy the same way I did the first time. Knowing that it is only temporary gets me through!  My current issue is pain, but doctor says it's all part of the healing process. Who know healing could hurt so bad? 

I wish you patience and speedy recovery. I hope things get back to normal for you very soon.

Wow. I so appreciate you all for posting here. I am becoming a bit depressed and scared before my scheduled redo pouch (in 2 weeks). I know I don’t want to live with the ostomy—it’s horrid. But I’m wondering if the second pouch will really be worth it. I had a bad first pouch—never had a good result. Chronic need for loperamide and diphenoxylate, even tincture of opium, and chronic abdominal and pelvic pain because my first pouch leaked and left me with all kinds of problems. And I had cuffitis constantly. And a surgeon who didn’t help fix what he messed up.

Much better surgeon this time, tons of revision experience. He was really upset to see what the first guy had left me with, and it couldn’t be salvaged, so second pouch it is. He didn’t know til the ileostomy surgery, when he found a big mess.

6 months of a loop ileostomy has been awful. I have really sensitive skin and am constantly itching, with horribly irritated skin in the area of the wafer—and this is the only one that doesn’t give me frank hives. So I know I don’t want to live with this. I admire those who can. I think part of the issue is that I’m allergic to so many substances that the only adhesives I can tolerate don’t allow me to swim or soak in a tub. I have to cover my pouch and wafer completely with plastic wrap to shower. It just seems ridiculous to have to do this forever.

But reading what people have been through with the second pouch is terrifying. I read my surgeon’s publication on his first 500 revisions. It was frightening. He doesn’t discuss these things with me, so I have to do my own homework, but part of me wishes I hadn’t. Ignorance might just be bliss. Fear is causing me to develop a serious anxiety... and I am not excited about anal leakage, strictures, and all the other goodies. Not to mention the chance of sepsis again—knowing my luck... And how long will the pouch hold up after going through all this? No way to know. Am I just prolonging the inevitable? 

Anyway, thanks for helping me once again see that I am not alone in my existential angst. No great alternatives. I have to hold it together for my family and pretend I’m ready and that it’s no big deal, but inside I am dreading this so much—the poor quality pain control, the variable care, the whole miserable experience. I feel like I have PTSD—I shake and cry just thinking about having to be in that hospital again. And it will be another difficult time with the ostomy because of swelling, and then I still have the takedown and the time for the pouch to adapt til I know if it was worth it. I don’t think I’m ready for any of this, but somehow I have to be. 

On the other hand, whenever I regret having had the first pouch and the whole mess, I think about a coworker’s son—he had his as a teenager, while mine started in my 30s. He and I were never in remission, even on all kinds of nasty meds. But he could never bring himself to accept even a temporary ostomy so he could undergo a colectomy. And nobody helped him reach that point or really told him the consequences of his choice, at least according to his mom. Because I know the meds are horrible, I jumped at the recommendation for surgery. It didn’t go well, but then again, I’m still alive seven years later, and despite this current bout of self-pity and depression, I’m able to take care of myself and live on my own, even with my limits.  The poor guy never got to have a career or a love life; he ended up living at home with his mom, because he was too sick to make it on his own, and he just died from lymphoma, at the age of 26, because of ten years on biologics. He suffered through PSC as well because of years of uncontrolled UC and ended up in liver failure at the same time as his lymphoma started, so he suffered a lot before the end. 

Compared to that, even a permanent ostomy starts to look ok. Okay, my crying jag is over. For now. 

Wishing all of you the best in your journeys... knowing all of you are going through as much or sometimes more will hopefully help me keep a stiff upper lip and just get through it.

Take care,



I had lots of problems with the bag when I did my pouch redo. I could not wait for it to be gone. My Stoma was con-caved and I needed a special wafer to make  the darn thing stick.  It leaked constantly... I had a 3-stage redo - Takedown was pretty easy and recovery was quick.


Please hang in there - This to shall pass





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