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Crohn's Disease Forum » Surgery » I'm pretty sure I'm getting a permanent stoma and don't know how to handle it


05-27-2017, 07:53 PM   #1
Turftech
 
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Join Date: Jul 2015
Location: Vaughan, Ontario

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I'm pretty sure I'm getting a permanent stoma and don't know how to handle it

I get irked by the thought of having this hole in me and I don't know.. that thought just stops me from researching. Whenever I try and see something, anything that has to do with the freaking hole.. I turn away. I'm a freaking forty freaking two guy. It shouldn't freaking bother me this much, but it does.

This isn't a childish "ewww" response, but rather a weesey watching-a-needle-go-in-my-arm-giving-blood kinda response. If you know what I mean by the difference.

Anyway, I've been trying to deal with this and I'd like to find some pleasant sites to help me ween my way further into acceptance. I don't have an issue getting the stoma and having the lifestyle change - that's not my problem, I'm almost looking forward to life with less Crohns.

I need assistance getting over the Irk factor.

Any specific suggestions would be great because I keep turning away from everything. It's like I want to accept it but I don't want to accept it.

Anyway. Still scouring this site as well, but I never know what I'm missing when I turn away from something, and I turn away from a lot.




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05-28-2017, 01:43 AM   #2
Sorebutt26
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Join Date: Apr 2017
Location: United Kingdom
I get irked by the thought of having this hole in me and I don't know.. that thought just stops me from researching. Whenever I try and see something, anything that has to do with the freaking hole.. I turn away. I'm a freaking forty freaking two guy. It shouldn't freaking bother me this much, but it does.

This isn't a childish "ewww" response, but rather a weesey watching-a-needle-go-in-my-arm-giving-blood kinda response. If you know what I mean by the difference.

Anyway, I've been trying to deal with this and I'd like to find some pleasant sites to help me ween my way further into acceptance. I don't have an issue getting the stoma and having the lifestyle change - that's not my problem, I'm almost looking forward to life with less Crohns.

I need assistance getting over the Irk factor.

Any specific suggestions would be great because I keep turning away from everything. It's like I want to accept it but I don't want to accept it.

Anyway. Still scouring this site as well, but I never know what I'm missing when I turn away from something, and I turn away from a lot.
Hi Turftech

There's a lot of Facebook groups. They may help you as they're dedicated to people with stomas, so you can chat to people that have them and I'm sure there will be people that have been in the same boat.

Pm me if you need the name of any. X

05-28-2017, 10:43 AM   #3
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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I was your age when I was forced into surgery to get a stoma. Like you I didn't want one. I worked in a large nursing home as a maintenance worker and saw people with one, and the horrible smell from the thing when nurses changed the bag. Awful! just awful, it looked like a painful horrible way to live.
Okay fast forward; Ive been living with a stoma for 16 years now, and life is manageable. I had part of my small and large bowel removed, and live with a colostomy.
Its a game changer for sure, I am no longer the physical active person I once was, but I still live rural and have to cut, split and pile 7 cords of white birch to heat my home each winter. I gave up all hunting except for partridge and live life in the slow lane of retirement.
In my case I do consider the timing of my surgery lucky as I could take the early retirement package. Honestly, I don't know how people can work living with a colostomy along with active Crohn's. I get tired very easily, and living with a stoma creates problems when sleeping. I am aware of the placement of my bag as I sleep and as a result I sleep lighter, and wake up often, each time I turn over so that I don't pancake the bage and rupture the flange that holds it on my skin causing a breach of containment (stinkin leak).
Perhaps people can work if their job is not too physical. My job involved maintaining and operating large boilers and HVAC systems. Lots of heavy lifting, shiftwork, and uncomfortable conditions, not conducive to having a colostomy. Perhaps its easier for those working in the office.
Life is possible with the stoma, and honestly it has improved the quality of my life despite the setbacks of mobility. The Crohn's on the other hand is still the larger of the two problems, I can live with a stoma, but the Crohn's is harder to live with given my poor reaction to treatments.
05-29-2017, 12:36 PM   #4
warrior2
 
Join Date: Oct 2016

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@turftech, I think you have good prospective, a positive attitude. Why does the stoma for you have to be permanent? I found out too late the small intestine could be reattcheder at surgery, where a stoma was not even necessary! I wasn't aware of this at all till I joined this group and heard from another member.

@burford, I don't see how anyone with a physical job as yours and mine can tolerate a stoma at all. I am 56 and have no upper body strength. Plus the twisting and heavy lifting does nothing to help. Sitting in an office doesn't help much either. I guess it's placement (stoma) really matters. 5 month post-op still can't handle this.

good luck to both of you.
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Crohn's Disease Forum » Surgery » I'm pretty sure I'm getting a permanent stoma and don't know how to handle it
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