Permanent stoma or J pouch

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624
Shiv

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

In Feb 2023 I became sick very sick, I had no illness up to date, lived a healthy life, until I started getting diarrhoea that tined bloody and I was going running to the toilet all day, I lost 3 stone in weight & I was admitted to hospital early March 2023, My consultant diagnosed me with UC, I never suffered from it before & I'm also pregnant 10 weeks, I was given two rounds of the inflexima infusion to treat UC, my body was not responding to the treatment,I needed 3 blood transfusions & as a result I needed to have life saving surgery as I was at high risk of getting sepsis as my bowel was about to burst, I had the surgery done March 22nd I was 13 weeks pregnant, my surgeons had given my baby 0% chance of surviving during and post surgery over the stress of the surgery, but miracles do happen & my baby survived and 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 v busy house, 

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

My stoma is v well behaved ,no issues with it,and with the J pouch it's juts the unknown as I know it effects everyone differently, I would like to have the J pouch surgery again it's 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 there stoma permanent are you happy with your decision? 

 

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

Thanks a million

 

Axl

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 was a train wreck, surgeon told me 50,% fail and I have my doubts about the quality of life about the other fifty % that don't fail but as I say it seems to work for some. Do your research as best you can.

Wish you well.

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Shiv
Reply to Axl

Hi Axl

 

I'm so sorry to hear that the J pouch didn't work for you ,it's a risk you've to take isn't it & I'm sure your 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 lots of people who had that choice taken from them and needed permanent stoma, I can't see myself having a stoma for rest of my life esp with two small boys, where if they were older and I was older I'd be more leaning towards having a permanent stoma then, on flip side with j pouch I donno how my body will react to it & needing to be near a toilet aswel will always be a worry,

I'll keep researching & thanks for getting back to me & I hope your on good health now & living your best life .

ron in mich

Hi Shiv i,ve had my ilieo. for 30 some years now due to UC but now dx crohns but i was also given the opportunity to have a j pouch until i saw a specialist in IBD and he didnt think it was a good idea for me so i had the permanent ilieo. and have,nt looked back since.

IGGIE

Think hard about it. Regards IGGIE

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Past Member

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 . 

Morning glory
Reply to Anonymous

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

Morning glory

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. 

gentlejohn

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.  

CrappyColon

Hey mama, you have your hands full with 2 little ones! I went through my pregnancies with a dying colon, just no one figured out the colon was dying til after. I had my appendix removed during my 2nd 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 year in 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 ok 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 Drs 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 :)

timcasey815
Reply to Shiv

Doing great dating seen un sure about but looking, recently divorced after35 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 

Harry

Hi shiv, Im 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. 

Redondo

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.

Rubyroo

I’ve had both.  While the j-pouch lasted awhile I don’t regret it.  I now have an ileostomy permanent. I don’t regret either.  Just wished 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.  

Rubyroo

I’ve had both.  While the j-pouch lasted awhile I don’t regret it.  I now have an ileostomy permanent. I don’t regret either.  Just wished 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.  

Mom2Sons

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

PamTX

I had a similar experience as you.  My u/c symptoms suddenly developed with my pregnancy.  3 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.  19 years later and 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.  

DavidK

Hi Shiv,

Congrats on the bambino!

I've had a very simliliar experience to yourself (bar the pregnacy 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. Vincents with Mr. Sean Martin. 

I did a lot of research in preparation by reading other peoples 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 alot of academic papers, and to summarise, 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-pounch 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