Permanent Stoma or J-Pouch: Seeking Advice and Experiences

Hi everyone, I'm new here and looking for some advice, I guess,

In Feb 2023, I became very sick. I had no illness up to date, lived a healthy life, until I started getting diarrhea that turned bloody, and I was running to the toilet all day. I lost 3 stone in weight and was admitted to the hospital in early March 2023. My consultant diagnosed me with UC. I never suffered from it before, and I'm also 10 weeks pregnant. I was given two rounds of the infliximab infusion to treat UC. My body was not responding to the treatment. I needed 3 blood transfusions, and as a result, I needed to have life-saving surgery as I was at high risk of getting sepsis because my bowel was about to burst. I had the surgery done on March 22nd when I was 13 weeks pregnant. My surgeons had given my baby a 0% chance of surviving during and post-surgery due to the stress of the surgery, but miracles do happen, and my baby survived. I had him delivered via C-section on Aug 31st, and he's 5 months old now. We are so blessed with him. We also have a 2-year-old, so it's a very busy house.

I met my consultant last week, and he said I can either make my stoma permanent or have a J-pouch.

My stoma is very well-behaved, no issues with it, and with the J-pouch, it's just the unknown as I know it affects everyone differently. I would like to have the J-pouch surgery, but again, it's the fear of more surgery, getting pouchitis, having accidents, etc., and not being active for my two little boys while I'm recovering from surgery.

 

I guess what I want to know is, those who made their stoma permanent, are you happy with your decision?

 

And those who had the J-pouch stoma reversal, how was your recovery and experience, and how are you finding life without a stoma bag and just using the toilet?

Thanks a million

 

Hello Shiv,

First, congratulations on your baby.

I had the whole J-pouch thing, but it was a disaster for me: pouchitis, cuffitis, urgency. Apparently, it works for some but not for me, so I made the tough decision to go back to the ileo, but it was the best thing for me. I had to try the pouch so I didn't die wondering if it may have worked, but it was a train wreck. The surgeon told me 50% fail, and I have my doubts about the quality of life for the other fifty percent that don't fail, but as I say, it seems to work for some. Do your research as best you can.

Wish you well.

Hi Axl,

 

I'm so sorry to hear that the J pouch didn't work for you. It's a risk you have to take, isn't it? I'm sure you're much happier and healthier now from your last experience. Yes, I'm doing so much research and I'm still on the fence about which one to pick. I'm one of the lucky ones who have a choice; there are lots of people who had that choice taken from them and needed a permanent stoma. I can't see myself having a stoma for the rest of my life, especially with two small boys. If they were older and I was older, I'd be more leaning towards having a permanent stoma then. On the flip side, with a J pouch, I don't know how my body will react to it, and needing to be near a toilet as well will always be a worry.

I'll keep researching, and thanks for getting back to me. I hope you're in good health now and living your best life.

Hi Shiv, I've had my ileo for 30 some years now due to UC but now diagnosed with Crohn's. I was also given the opportunity to have a J-pouch until I saw a specialist in IBD, and he didn't think it was a good idea for me. So, I had the permanent ileo and haven't looked back since.

Think hard about it. Regards, Iggie

Shiv

I have just joined up and have a similar story to you. I'm considering the reversal but obviously am scared. I have 3 kids, am a single dad, and have to work. Life works fine with the stoma, but I miss not having it. I feel like I need to give it a shot, but the more I learn about it... It's a huge decision. The surgery getting it installed brought me to a dark place. Best of luck with your journey. I have an appointment to discuss my options on Tuesday, so I guess that brought me here.

Good luck. Let us know how things work out for you.

Welcome to the site and congratulations on your baby. You have a tough decision to make, but I am sure you will make the right one. Just do your research.

I made a conscious decision to have a straight ileostomy. With an ileostomy, you have complete control. With a J-pouch, you are subject to a lot of potential complications and ultimately losing a lot of small bowel when the pouch is removed. An end ileostomy is the fastest way to get your life back. With a J-pouch, you still are at risk of many frequent bowel movements and need a restroom quickly. I have no regrets.

Hey mama, you have your hands full with two little ones! I went through my pregnancies with a dying colon, just no one figured out the colon was dying until after. I had my appendix removed during my second pregnancy. The surgeon could tell it was the part of the colon that the appendix attaches to that was angry at the time, but took the appendix and hoped for the best, I guess? They told me I was losing the baby after the surgery, but she's 12 now. I have an IRA (ileorectal anastomosis) and am only a little over a year into the reversal process. Before I knew what I do now about a J-pouch, I think I'd have tried it, but if for some reason the IRA wasn't working and my options became J-pouch or ostomy, I would get an end ileostomy. I went into my reversal being okay with it not working well and having another surgery and going back to a different type of ileostomy. Either way, I was going to have another surgery because my loop ileostomy was a diva. I don't know if you're considering more children, or what your medical team recommends. I did ask my doctors what different options would look like for me if I did want pregnancy to be an option—I won't take up space here to go into that. We have a rule, or rather I have one, at home: whoever has no colon gets to use the bathroom first :)

Doing great, dating scene unsure about but looking, recently divorced after 35 years but 175 lbs muscular and cut, tan daily, workout 6 days a week, hike, love outdoors, miss close companionships, getting back out there, looking.

Hi Shiv, I'm sorry to hear what you are going through. I know another woman about the same age as you with an identical story, and she too almost lost her baby. I would love to put you in touch with her as she is also from Ireland and has 2 kids. Like you, she was never sick in her entire life, and then for some reason, when she was pregnant, she ended up with major stomach complications which doctors haven't been able to explain. My Insta is dbrendano if you would like me to put you in touch with her.

I wouldn't mess with a J-pouch, especially if what you have is working. I haven't heard very good things about a J-pouch, and it actually made things worse.

I've had both. While the j-pouch lasted a while, I don't regret it. I now have a permanent ileostomy. I don't regret either. I just wish the j-pouch would have lasted longer, but complications led me to my ileostomy, and as much as I hate it, I love it. No more running to the bathroom and no more pain. So, as I know, it's a tough decision, but I'm free of that terrible disease! Finally. I started this journey at 18, and now I'm 64. Good luck and enjoy life... and the babies.

I've had both. While the j-pouch lasted a while, I don't regret it. I now have a permanent ileostomy. I don't regret either. I just wish the j-pouch would have lasted longer, but complications led me to my ileostomy, and as much as I hate it, I love it. No more running to the bathroom and no more pain. So, as I know, it's a tough decision, but I'm free of that terrible disease! Finally. I started this journey at 18, and now I'm 64. Good luck and enjoy life... and the babies.

Hello, 

I too have a permanent ileostomy after a failed j-pouch. As much as I wanted my j-pouch to work out for me when I had it, I'm happy with my permanent ileostomy. I had constant pouchitis, incontinence, and could not gain weight to save my life. I was miserable. I hope you are able to gather as much information as you need to make your decision, and it will be the right one for you. 
Best wishes.

Doris

I had a similar experience as you. My UC symptoms suddenly developed with my pregnancy. Three months after delivering my baby, my colon ruptured and I woke up from emergency surgery with an ileostomy. In the beginning, I was sure that I wanted to have the J-pouch surgery as soon as I was healed from the first surgery. After I got used to the ileostomy, I started having second thoughts. I never did have the J-pouch surgery - too many unknowns and complication risks. Nineteen years later, I now have a permanent ileostomy and have never looked back. It has worked well for me and hasn't impacted my lifestyle at all.

Hi Shiv,

Congrats on the bambino!

I've had a very similar experience to yourself (bar the pregnancy of course).

I had never been sick and in May '22 I developed symptoms and got really sick in Aug and had emergency surgery to remove my colon.

I've been offered the option of a J-pouch and at first I was reluctant as I had been through an awful ordeal, but after giving it careful consideration and meeting with the surgeon a couple of times I decided to go for it and now have surgery planned for early April. I'm having the operation in St. Vincent's with Mr. Sean Martin.

I did a lot of research in preparation by reading other people's stories, e.g., from the IA support group website, which is a fantastic resource and they also have in-person support group meetings throughout Ireland, which I would recommend going to.

I also read a lot of academic papers, and to summarize, as with any surgery, J-pouch surgery has its risks and benefits which should be considered before you make your decision.

The best advice I can give you is to trust yourself and take your time and do as much reading and research as you can. Also, write out on a sheet of paper the pros and cons of permanent stoma vs. J-pouch and give yourself time to "digest" the information before making any decision. I'd also recommend writing any concerns or questions you may have on a sheet of paper and bring it with you next time you see your surgeon and ask them your questions.

It can all seem very daunting and overwhelming at times, but as J-pouch surgery is elective there is no hurry, so take your time and no doubt you'll make the right decision for you.

Take care,

Warm regards,

David