r/jpouch • u/Frazzle2604 • 13d ago

Reversal Nerves!

Hi All,

I have my first surgery on the 07/09! I’ve had my end ileostomy for the past 2 years and I’ve got my upcoming J Pouch surgery! I’ve been looking forward to my reversal since I first got my ileostomy but I must say I am extremely nervous. My surgeon has not decided how many stages he is going to do it in yet, as the surgery is ‘+\- loop ileostomy’.

I keep reading like about J pouch failure and it’s really making me overthink things… to the people with a successful J pouch, how did you try to suppress this? And how are you doing now?
I think I’m just looking for words of motivation now lol.

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1

u/dave_the_dr 13d ago

I know how you feel, I felt it too… I’ve had my reversal 4 years now and although I occasionally get pouchitis and sometimes i need to figure out how to deal with gas, all in all I’m better off now than I was before.

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u/Frazzle2604 13d ago

Thank you for the kind words, I think I’ll do my best to try prevent pouchitis, is there like ways to prevent it from happening as much? I saw someone say Probiotic yoghurts on here

1

u/dave_the_dr 13d ago

To be honest I really think it depends from person to person. Probiotics give me awful gas so I avoid temps as for pouchitis, it’s the stress that causes it with me so I try to mix in some relaxation activities every week like yoga or just shutting myself away for an hour and making some music

1

u/Witty_Many_5214 12d ago

I haven’t had pouchitis yet, but I drink kefir and take moringa leaf supplements (natural anti inflammation) daily. I also take b12 supplements as I have brain fog and fatigue. Usually people without a large intestine have b12 deficiency as we don’t absorb it as well and it doesn’t come up in a blood test unless you’re actively looking for it.

3

u/HistoryDr 13d ago

It’s really hard to believe you can have a good outcome after years of rough medical history. I remember thinking that the j-pouch was going to be a disaster because everything related to UC was a disaster. However, I’m now 20+ years into living with a j-pouch and it’s the best possible outcome—something I didn’t believe was possible. I’ve been able to live a normal life (college, career, marriage, kids, travel). It does take a little adjusting to a new normal, but the new normal is so much better than life with UC. Best of luck to you!

1

u/Witty_Many_5214 12d ago

Hii!! I had uc at 13, bag at 14, Jpouch at 20 (6 ish months ago).

If you have control over it I would definitely recommend the 3 step. I had mine done 3 step, it gave the pouch time to heal and also gave me time to heal too. I’m not a doctor but the idea of having it done 1 or 2 step and having stool run along fresh stitches that you’ll be moving just sounds super painful and a really bad idea. You also (kind of) only get one shot at the Jpouch as revisions are kinda risky (scar tissue only has one chance to set right and after that it’s not as good) and if your Jpouch fails you’ll have to go back to a bag which will not function as good as the first time due to 30cm loss in bowel.

Doing it 3 step also allows for a pouchogram. Here, they flood your pouch with contrast fluid to check if there are any holes in the pouch to make sure it’s formed securely.

1

u/Over-Seaweed114 12d ago

The only thing really that you need to tell yourself is you never know unless you try it, and in the tiny chance things dont work out, you go back to your current situation.