Log in
Endometriosis UK
38,080 members33,280 posts

Stoma worries

Hi all,

Wondered if anyone could provide any reassurance? I am due to have my second lap on Friday to excise my recto vaginal endo. I’ve had a MRI and sigmoidoscopy and been told it hasn’t perforated my bowel and colorectal surgeon told me (quite dismissively) that I definitely won’t need a stoma as my endo is next to my bowel, not through it.however, my Gynae consultant has told

Me it is a possibility and the nearer the time gets I am getting nervous. They referred me to the colorectal surgeon for reassurance but he just sent me away saying ‘I don’t know why they referred you here’ so now I feel unprepared if that is the case. Does anyone know how likely that is given that my bowel is not directly involved? And if yes any experience of having a stoma that could be reassuring?I’ve been told I’ve got quite extensive endo and adhesions coating my ovary, not on tubes but that it is also dense adhesions that is sticking everything together.

Thanks for any advice

14 Replies
oldestnewest

Assuming you're at a bsge centre, this gives you the stats for RV endo. As it shows, it is very unusual to need a resection and stoma but we all get the talk beforehand as it is a possibility.

bsge.org.uk/wp-content/uplo...

My brother has a permanent one due to colitis and is working and living normally. It will be OK. x.

1 like
Reply

Thank you so much, yes I am at bsge centre, this is really helpful. X

Reply

Hi, in terms of the stoma ive had my temporary stoma for just over 2 years now due to endometriosis. It took a few weeks getting use to it but its not really a big deal once you have the right bag and same routine. There'd be a specialist nurse who helps with everything. As the other post says its very rare for it to be done (im one of the unlucky ones) so i wouldnt worry. Good luck.

1 like
Reply

Thank you so much, really kind of you to offer me some reassurance! Thank you again x

Reply

Hi Jull, thanks for sharing and I’m sorry you had to go through this but I’m glad it has gotten easier for you and you are used to it now. I hope you don’t mind me asking but I was wondering if it’s reversible why you have had it two years? And how they assess when it’s time to reverse it? X

Reply

Hi, i think initially it was so my bowel could have a break and for me to fully recover from the surgery that i had, however i seen my bowel surgeon in october and he really wants me to have a full hysterectomy which im unwilling to have so thats why its taking so long to sort out.

The other option that i have is for them to reverse the stoma, remove as much endo as possible and sort out my ureter (i also have a stent) which my endo consultant is fine with doing however i think my bowel surgeon disagrees, this is my preferred option so theres alot to do. It really should be sorted out this year, hopefully in the next 6 months.

Reply

Ah ok, that’s sounds quite complicated, it’s good you are standing your ground there. I hope they get together and agree on some planned surgery soon. Avoiding a hysterectomy is my preferred option too.

1 like
Reply

I’m in the same position and due tonhabe surgery on Thursday. Although the sigmoidoscopy was clear in that they couldn’t see any endo on the inside of the bowl I’ve been told by the specialists, colorectal and gyno that they won’t know if it’s attached or indeed grown through the wall until they operate.

When I spoke to the surgeons they asked me how far they wanted to go in terms of removing all the endo and possibilities of permanent stoma and bladder bag as I also have it grown through my bladder and have to have a section of my bladder removed. I know it’s super scary but maybe talk to your surgeons before to let them know what you are, or aren’t comfortable with. Best of luck I’m sure you will be great and it will go well

Xxx

Reply

Thank you so much. I will make sure I speak to them in more detail tomorrow when I go for my consent. Thanks for support and all the best with your surgery tomorrow. I hope it all goes well for you x

Reply

Try not to worry, although know that’s easier said than done. I had a temporary stoma for about 12 months 10 Years ago did to severe Endo completely strangling and infiltrating bowel. It was a shock as not planned but honestly was fine once I got use to it. You get so much support from wonderful stoma nurses and once your organised and use to it it’s teally ok. I actually asked to keep it permanently as it sorted out my symptoms so well at the time. But it was reversed once my bowel was healed. No regrets. It did a great job. Just make sure you ask lots of questions. And don’t be scared, once it’s all over, to complain or share your thoughts on the attitude of the colorectal consultant - not helpful when your going through such a stressful and difficult time! Good luck, all the best x

1 like
Reply

Thank you for the support, that’s good to know! It’s just the uncertainty I suppose of not knowing what will happen, but not long now I guess haha. Thanks for the kind words

Reply

I had alot of endo removed including a large rv nodule 2 months ago. I was freaking out but it's all been ok and bowel surgeon not needed thankfully ... try not to worry too much as from experience getting in a state doesn't help... however easier said then done. Good luck xx

1 like
Reply

Thanks :-) can I ask how long you were off work for, if you’re working? Thanks x

Reply

I work (office based) 4 weeks. I prob could of gone back abit sooner 🤔😅 but even now pushing a full trolly round the supermarket pulls a bit so don't over do it xx

Reply

You may also like...