• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Op for first Stoma next week - help!!!!

E

emmaw

Hi all! I have just registered on the forum. I have dipped in and out of the forum over the past few years since my diagnosis of Crohns in 2010, I was really impressed with the support you guys give each other. So that's why I've registered now in my hour of need!

I am going in for my 3rd resection next week, I have 2 strictures and the surgeon is pretty confident that I will be fitted with a temporary stoma. I will then have to be transferred to another hospital to have overnight infusions of minerals and vitamins for 2 weeks, where they will teach me how to do this at home for the duration of the Stoma.

I only found this out 2 days ago so I am scared, emotional and pretty low about both the Stoma and the infusions. Can anyone offer any help and advice on how to deal with this please??! 😱😭😭😭😭
Thank you
 
Y

yellowamc

I am so sry to hear about your 3rd resection. I my self have had one trictureplasty and a resection so i know how u feel. Ive never have to do a stoma. But i can say hang in there and try has hard as you can to not let this desease win .
 
2

24601

Location
London, UK
Hi EmmaW,

That's a lot of surgery in a short time. I'm really sorry you're having to go through that. I've had four surgeries - three resections and multiple strictureplasties, plus one surgery just for strictureplasties - but over 13 years.

Which part/s of your bowel are affected by Crohn's? My disease has all been in the jejunum and ileum and for the last two surgeries my surgeon has said that he *might* have to create a stoma. For the first of these (actually my third surgery) he told me that he wished he could create a stoma because he thought it would be good for my bowel to rest and heal but that he probably couldn't because the strictures were so high in the small bowel that it would be a very high output stoma and difficult to manage. He told me that if I did end up with a stoma after surgery that I would have to continue on TPN (I'd been on that for 6 weeks prior to surgery). In the end he didn't create a stoma and I was mighty relieved to say the least.

Before my last surgery I was told once more that I might be given a stoma as he just couldn't tell exactly how the surgery would go and that sometimes once you're in you find something a bit different to what you were expecting and/or you can't always create a healthy and secure join depending on what the bowel tissue is like.

I was really worried about that possibility and for me I was told it potentially hinged a lot on the condition of the bits of bowel he was going to be joining and how stretched out they were in the dilated areas in front of the strictures.

I was given the option of going on a liquid diet for two or three weeks ahead of surgery to prepare my bowel as best we could to be rejoined so that's what I did.

For me it worked and my surgeon was really happy with the condition of the bowel and found it to be much less dilated than had been seen previously on scans and therefore much more suitable to be rejoined.

I don't know if any of that has any relevance to you - and I realize that your surgery is currently planned to happen very soon but if you need more time to prepare yourself for any of this then delaying may be an option. Even if you just need more time to get your head around it. I completely relate on being scared though - regardless of how much preparation or time one has had to get used to the idea surgery is really scary. I think I may have been more scared for my fourth surgery than any other because I'd already been through it so many times.

Wishing you the very best of luck and please let us know how you are going.
 
Grotbags

Grotbags

Location
Fife Scotland
Hi
I had my first surgery in December, which was to remove my entire large bowel, and create a stoma.
Two months on and I'm loving my stoma, I've been lucky in that I've had no issues at all, and took to pouch changes and having a stoma, like a duck to water.
Before I had it done, I was worried, I just couldn't imagine what living with a stoma would be like, I couldn't even get my head round having a shower with one .
There are downsides I admit, I have to get up during the night to empty, which I set my alarm for, and I'm paranoid about getting a hernia, but other than that, everything's been fine.
Funnily enough, I feel more free now than I did previously, before I was always having to rush home to go to the loo, as I wouldn't use public ones. Now I don't give a hoot as my output doesn't smell much, and I can be in and out in the blink of an eye.
I even emptied my pouch up the hill a few days ago, I just went into the middle of the heather where nobody would go, and did it !. It is a very quiet spot though, so no chance of being seen, I really don't feel embarrassed in the slightest by my stoma and having a pouch of poo.
It's really all down to mental attitude, this will hopefully improve your life if you let it, so why not be positive about it, do your very best to help yourself get through this as quickly and efficiently as possible, and get on with your life.
I'm even considering going to Crufts next year, something I could never have done before I got my wee pal Squirter McWhirter.
 
E

emmaw

Thankyou both so much for your helpful advice and support. On Thursday I had my pre admission appt and met the Stoma nurse who was lovely and talked me through everything. She marked the spot on my stomach where the Stoma will go. I am starting to get my head around it, I have been told it's tempoaray so I figure the sooner I have it done, the sooner it comes off!! I have already named it Sheila - Sheila The Shitbag!! I know its a bit crude but I'm using my sense of humour to help deal with it all. My Crohns and strictures are in the small bowel, my Ileostomy will be high and will have a high output, which is why I have to have TPN for the duration of the Stoma overnight. All in all, I have not been well for quite sometime and have not eaten properly for weeks, on Freshebin and rice crispies, so I am looking forward to feeling better and eating some real food.

Thanks again for your advice!

Grotbags - you did make me laugh about emptying on the hill!!! glad you have taken to it all well, I hope I do too.
😀
 
2

24601

Location
London, UK
Glad to hear you are feeling happier about the surgery :thumright:

A sense of humour always helps and that's great that you had a reassuring pre-op appointment and have a supportive team looking after you.

Good luck with the surgery and let us know how it's all going!
 
Grotbags

Grotbags

Location
Fife Scotland
Pmsl, Shiela the Shitbag is brilliant, wish I'd thought of that !.
The NHS stoma nurses are brilliant, I love mine, she's so helpful.
Having a positive outlook is the key to having an easy time of it I think, and if there is a hicup , well you just square your shoulders and plough on.
A lot of the things I was terrified off have never happened, wounds opening up and pouch leaks were right at the top of the list.
Neither have happened, the worst that's happened is I got a wee sore bit where my skin was exposed to the output, and Squirter acting up and spitting at me when he was supposed to be asleep and getting his nappy changed :lol2:.
Once you have your stoma, it may take a day or so to start working, once it does, do your own pouch changes on your own ASAP, you won't be allowed home until you can do them unattended.
Best of luck, with your sense of humour to keep you going, you'll be fine
 
You must log in or register to reply here.
Top