living with stomas

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hello

Postby annie30 on Tue Jan 10, 2017 5:41 pm

As I suggested this section, I thought I'd better make the first post! I've had my ileostomy since May 2016 following emergency surgery for a blockage and perforation caused by undiagnosed diverticular disease. I had been seeing my GP for a couple of weeks previously, but unfortunately my symptoms were more in line with IBS and I never made it to the tests I was booked in for as I was already recovering from the surgery by then! The stoma was a big shock as knew absolutely nothing about them -learnt pretty quickly though. Not planning on a reversal, although never say never. Just thought it would be good for us ostomates to have our own forum where we can ask questions and share tips.
annie30
 
Posts: 3
Joined: Mon Jun 06, 2011 9:06 pm

Re: hello

Postby CazH on Wed Jan 11, 2017 7:46 am

Hey Annie30,

Great idea for the separate forum area. Sounds like quite an ordeal you went through, and a shock to the system to have a stoma. I also have an ileostomy (also since last year), not likely to be reversed. I started a blog to keep me feeling busy and useful during the time off, a bit on Invisible Illness (mental and physical) and stomas. Not sure if I can post the link here or not so please feel free to remove - http://www.invisiblyme.com

Are there any issues you find particularly difficult regarding your stoma, certain problems that you struggle with more than others? For me, it's the problems with the remaining colon (now waiting to possibly have this removed soon) and adhesions (which have caused bowel kinking and blocking and a couple of A&E visits!)

Would be lovely to hear more from you and any other ostomates out there on the TalkHealth forums :) x
talkhealth Women's Health, IBS & Mental Health Ambassador
talkhealth blogger

Founder of http://www.invisiblyme.com
CazH
 
Posts: 15
Joined: Tue Oct 11, 2016 12:01 pm

Re: hello

Postby annie30 on Wed Jan 11, 2017 11:50 am

Lovely to hear from you. I will check out your blog later.

I'm fortunate not to be having any particular problems with ileostomy at the moment. My remaining colon isn't attached either end. I have a mucous fistula above my stoma which drains any mucous it continues to produce. There isn't much space between them which is a bit of a problem fitting bag and stoma cap and often get sore skin there.

My relatively minor issue at present is leakage through air filters on my bags. It was a very rare occurence but has recently got more frequent. I've taken it up with the company making them and they are investigating. Others on the IA support forum are having same problem so feel a bit happier knowing it's not just me.

My surgeon thinks a reversal may be possible but it all sounded quite major and involved at least 2 more operations in my case with no guarantees things would function normally afterwards, which is why I've decided not to have it at the moment at least. As things are, I'm leading a reasonably normal life and would prefer things to stay that way!
annie30
 
Posts: 3
Joined: Mon Jun 06, 2011 9:06 pm

Re: hello

Postby CazH on Sun Jan 15, 2017 7:48 pm

Hey Annie,

I'm glad you're not experiencing any major ileostomy problems, though I can see how the leaking through the filter would be rather off-putting. It's not a Sensura-Mio by any chance..? Glad you've raised it with the manufacturer.

That your surgeon thinks a reversal could be possible is great news. I understand the hesitation though; it's a big op, no guarantees, and like you say it would probably involve a temp stoma before fully-reattaching and then dealing with a whole new way of life yet again. It's an option for the future for you though, if/whenever you may be ready for it. x
talkhealth Women's Health, IBS & Mental Health Ambassador
talkhealth blogger

Founder of http://www.invisiblyme.com
CazH
 
Posts: 15
Joined: Tue Oct 11, 2016 12:01 pm

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