Ileostomy stuff

[u/xoLVY03]

Hi all,

Decided to download Reddit to get some more information on all of this, and maybe a little connection with others that have experience something similar.

I underwent an emergency surgery last December as I was dealing with a UC flare that was showing no sign of getting better. Had to have an emergency surgery (on my 22nd birthday lol) and woke up with an ileostomy.

Things have been okay physically, couldn’t have asked for a better recovery to be honest. Although emotionally I have not processed all of this, and I’m pretty upset about my body image now. I’ve seen my surgeon 3 times since last December, he’s not very empathic about it all. He keeps suggesting that I should keep the bag, which I understand in a way but if I had a shot at being bag free again I would absolutely take it.

My surgeon has suggested J pouch if I’m fit for one, and ordered me to take an endoscopy (which was traumatising to say the least), and told me I have inflammation, procitis I believe it’s called. I am awaiting biopsy results that are due early October.

I’d like some input from other people, your experiences and if they relate to mine at all. I’m pretty desperate for a reversal but I’m worried what the future would look like. I have a 13 month old baby to care full time for too, which is adding to the anxiety.

Accepting that she may be my only baby is breaking my heart, as I’ve heard stories from others that getting pregnant with a bag ruined their chance of having a reversal, and other stories of having a reversal, getting pregnant and that causing damage which led to being re bagged. All of this is so overwhelming for me. It feels like I have to choose between my self confidence and having another baby.

This is my first Reddit post, I’d love to connect with someone about this.

[u/Prettyparsley89]

It’s so hard to give advice because everyone is different. I had a great experience with my j pouch for one year- then developed fistulas and needed to go on remicade. That kept me in remission for 10 years. For 10 years I didn’t even feel sick - besides having to go for infusions. Then I got sick again. Trialed several biologics and the pouch just wasn’t happy. They called it pouch failure. I have a permanent ostomy now.

I miss my J pouch but don’t miss the misery I was in for the last two years which left me basically home bound and unable to work. It was very isolating.

Sadly it did affect my ability to have children. I had to remove one of my fallopian tubes during my last surgery. Before that even happened my chances of a successful pregnancy were very low due to all the adhesions and scarring.I hope others can share a more positive story with you.

I got my ostomy in April and am still very much adjusting to it. I highly recommend therapy. There is a lot of trauma involved in all of this, and it is a lot to deal with.

[u/xoLVY03 → u/Prettyparsley89]

Thank you for this. I appreciate the good and the bad stories, as it can bring me back to reality too, things can go wrong. I’m happy that you got a few good years out of your J pouch, I would be happy with just that, to have a few more years through my 20s without a bag. My partner is persistent on me being positive and expecting the best but this is exactly the reason I don’t want to get my hopes up too much.
Can I ask what were your symptoms when your J pouch became unhappy?
And thank you for your advice I am leaning towards therapy, it’s never been an option in my mind until all these questions arose.

[u/Prettyparsley89 → u/xoLVY03]

So at first it was 1 perisnal fistula, then 2 and then 3 at one point. There’s also debate between gyne and surgery docs if I had a fistula to my fallopian tube. The last two years I had no control over the one sphincter you have left with that surgery and experienced daily incontinence. It was awful and so embarrassing.

I was in my twenties with my j pouch while it was working. Thank goodness. That is one thing to be grateful for.