Struggling after emergency bowel surgery

[StomaInATeacup]

4 weeks ago (yep, on Friday the 13th…) I was admitted for an appendectomy but when I woke up i was told I’d had a large infected mass (probably crohns) removed from that area resulting in a bowel resection and temporary stoma bag (ileostomy). I am really struggling to cope, I hate the bag, because of where the stoma is it leaks constantly so I don’t feel confident going out. My mental health was already fragile before this and now it’s rock bottom.

I’m 32 and a mature student at uni but I don’t think I’m going to be able to go back and I’m so angry and upset that this has happened

Any words of wisdom, hand holds, ostomy tips are all welcome!

Do you have a stoma nurse ? You shouldn't have to cope with it leaking constantly

No words of wisdom as I don't know much about that kind of surgery but I am so sorry that this has happened to you. No wonder you are shocked and struggling.

Can anything be done to improve how the bag is positioned and stop it leaking? Please don't give up your course. Can your university support you with remote learning until you feel more ready to go back in person?

You need to speak to your colorectal nurse OP that’s what they are there for! You’ve been through a huge op that has changed your self image. You are grieving for the person you “used” to be, you feel angry and that’s totally understandable. You need to feel all those things.
There are some really inspirational Instagram accounts if that’s your thing where girls wear their bags with pride.
Crohns is a bastard as it can affect people who are so young! But there is support out there OP please make sure you get some

You need a ostomy nurse. Nag the hospital and your GP for help. The big brands do support for users too and may have nurses which can call out to you.
I'm in Ireland and our local Hollister nurse is wonderful. DS had a similar emergency stoma fitted a year ago, so we went through a similar shock. And it was a huge shock. His stoma slowly shrank over a few weeks post op, as his bowel was so damaged, but it got easier to handle and he's adjusted well. His nursing team say adults take about 6 months to adjust, so take it slowly and be kind to yourself. But keep demanding help to find the products which work for you to avoid leaking.

Thank you all

I have seen the stoma nurses a fair few times and we’ve tried loads of different ways, but the stoma is so close to my belly button and midline scar, and the surgery has caused a dip in between that area too 😔 I’m a bit overweight too so as soon as I sit up, the bag creases in the problem area. I have tried to order sample bags from suppliers but they all require me to call and discuss and I just don’t have the energy, I hate speaking on the phone at the best of times

Uni have said I can do some of the lectures online like we did during covid but very frustratingly this semester has a forest school module which is a whole day off campus, and a placement. Alongside this starting uni was already stressful being older than most of the class and not gelling with anyone, the more I don’t go in, the worse it’s going to be and that’s something I won’t cope with (long story but prior to this have been struggling socially after not making any friends in this area since I moved 5 years ago so have been very lonely)

It honestly all just feels like a mess and too much, I wish I could just sleep until I am able to have it reversed

You poor thing.

How about look on Instagram for others with stomas? There are many people much younger than you.

It can help to normalize the situation for you and make you feel less alone. There are plenty of tips to pick up too.

If this appeals to you, try these. You don't need to join Instagram or sign up in order to see them:

crohnsandcolitisuk

ibdwarriorprincess

thelaughingstoma

stoma_joe

leoniestoma

lifewithastoma_

I was in my early 20s when I was diagnosed with crohns and had drastic emergency surgery. I had an ileostomy for 18 months. Since then I have had 2 children, qualified as a teacher and my crohns is managed well (TOUCH WOOD). I'm now nearing 50 and I just wanted to let you know that it is so difficult to deal with when it's happening, but there is life after. Please find the energy to call the suppliers of the stomach products to discuss a better solution for your leaking bags. Be kind to yourself. What used to help me cope at the young age that I was when I had the stoma, was that it saved my life. It was hard, but that made it easier to deal with.

*stoma products. Stupid autocorrect