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Crohn's Disease Forum » Surgery » Stoma Subforum » My stoma just disappeared!!


03-19-2014, 05:58 AM   #1
UnXmas
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My stoma just disappeared!!

I mean literally. I woke up this morning, and I felt gas coming through my stoma, as it usually does, but it felt more like it did right after the surgery, just a bit uncomfortable each time a bubble came out. Got up, had a shower. Took the bag off... my stoma is gone. There was just a small red patch, completely flat on my stomach. And faeceal matter and gas is coming out of the flat red patch.

I start yelling for my dad (my mum was out). He tells me to stop panicking

It's too early to ring the stoma nurse, there's no way I'm going to A&E if I can possibly avoid it, so I ring the NHS 111 line (a helpline where you speak to medical professionals and they tell you whether you should go to hospital, whether you should see your GP, or whatever).

The clinician I speak to doesn't know what a stoma is. He guesses I should probably go to the emergency department.

Luckily it is 9:00am by now so I ring my lovely helpful stoma nuses.

They (I was speaking to two at the same time - the one who answered the phone and my regular stoma nurse whom the first nurse went to get when I told her who I was) explain to me that stomas retract sometimes and it's nothing to worry about. They arranged for me to come in tomorrow morning so they can check and reassure me that's what has happened.

Why did no-one tell me before that this could happen?! It would have saved me almost having a heart-attack this morning. It's like waking up to find you're missing a leg or something.

(Though to be honest the main worry on my mind was that I was going to have to go to hospital. I was more worried about having to go see doctors than I was concerned that something was wrong with my stoma.)
03-19-2014, 07:03 AM   #2
superzeeman
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Oh my! I had a stoma temporarily and I was told that it could happen along with prolapse where is comes out more than intended. I hope you get it sorted soon. Sorry you have to go thru this.
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03-19-2014, 08:18 AM   #3
VeganOstomy
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I've seen my stoma "suck in" recently, often just before there's output, but it always returns back to normal and it doesn't go completely flat as you've described. I guess that's one of the benefits of using a clear pouch.

I took some photos and videos of it happening in case I needed to refer back to it at some point.

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03-19-2014, 08:19 AM   #4
Kero
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Gah! I don't blame you for panicking, I would too if I was in your situation. Glad to know it's a "normal" thing to happen.
03-19-2014, 01:55 PM   #5
UnXmas
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Once I got over the shock and was reassured by the stoma nurses (and then did some googling on retracted and "flush" stomas) it's been fine... just disappeared . But it feels normal and is clearly working fine, and the bags still do their job, so it's ok now. From my reading it seems like if it stays like this (or, if it does go back out, goes in again on a regular basis) the main problem is that the skin round the stoma is exposed to waste more so you have to clean it often and use convex bags (I'm already using convex bags) and various other accessories to try to protect the skin.

I'll see the stoma nurses tomorrow just to check that's all it is, but when it feels so normal and the nurses were really not concerned, I'm pretty confident it's alright. I just wish I'd known this could happen! I did do a fair amount of reading prior to getting a stoma, had a look over all the bumph they sent me home from the hospital with, etc. and don't remember ever coming across it, unless I just read it without actually making the connection in my mind of what it would actually look like should it suddenly happen.
03-19-2014, 03:41 PM   #6
nogutsnoglory
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That is so scary! Reading your post gave me goosebumps. I know mine retracts a bit but I see him.

How do you poop if it goes inside and doesn't come out?
03-19-2014, 03:50 PM   #7
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Wow. I wouldn't of thought of them disappearing. Mine did the opposite. It looked like it was making a bid for freedom. Had to hold it back with an elasticated belt.

I did the same as you though - spoke to the ever wonderful stoma nurses - who immediately reassured me and told me it was nothing to worry about. I can't praise them highly enough.
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03-20-2014, 03:14 PM   #8
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Disregard all my confidence - stoma nurse visit ended up with me seeing surgeon - the stoma hasn't done what they thought at all, it's gone so far in and nearly blocked so nothing can get out but tiny amount of liquid. The surgeon couldn't even get his little finger-tip in. They'd never seen anything like it before. Going to mean more surgery.
03-20-2014, 03:21 PM   #9
VeganOstomy
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Disregard all my confidence - stoma nurse visit ended up with me seeing surgeon - the stoma hasn't done what they thought at all, it's gone so far in and nearly blocked so nothing can get out but tiny amount of liquid. The surgeon couldn't even get his little finger-tip in. They'd never seen anything like it before. Going to mean more surgery.
It sounds like you made a good decision to see your nurse. Do you have any dates or future appointments set? We're all here for you
03-20-2014, 03:34 PM   #10
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03-20-2014, 04:09 PM   #11
nogutsnoglory
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Ugh sorry! Is it an emergency surgery? What caused this?
03-20-2014, 04:41 PM   #12
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Mines been like this for 2 years
03-20-2014, 05:51 PM   #13
Nyx
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Sorry to hear it's going to mean more surgery I hope they sort it out for you quickly and that it's not too major a fix. Obviously keep us posted..
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03-20-2014, 07:48 PM   #14
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Oh no! I thought for sure it was just a thing that happens and nothing more that that.
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03-21-2014, 06:54 AM   #15
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There is a Facebook group called my bag & I. Maybe join it and see how you get on.
03-23-2014, 02:19 PM   #16
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This thread has been reopened as this is a support forum first and foremost. All posts that were off topic have been deleted or edited by me. If anyone has any issues regarding the forum's staff etc then please come to me directly.

This is a serious matter that UnXmas is going through so let's all try to stay focused on that.
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03-23-2014, 02:28 PM   #17
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Thanks for reopening the thread, I was really concerned for UnXmas, and want to know the outcome of this ordeal! I've never heard of someone's stoma disappearing, so I think it will be good to have this info out there in case it happens to one of us.
04-05-2014, 05:51 AM   #18
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Checking in to see how UnXmas is doing. Anyone know?
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04-05-2014, 06:02 AM   #19
VeganOstomy
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Checking in to see how UnXmas is doing. Anyone know?
I sent UnXmas a private message last week to check in and received no reply

04-21-2014, 04:40 PM   #20
VeganOstomy
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Has anyone heard from UnXmas?
04-21-2014, 05:44 PM   #21
nogutsnoglory
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Unfortunately I think she is no longer on the forum.

04-21-2014, 05:47 PM   #22
VeganOstomy
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Unfortunately I think she is no longer on the forum.
It saddens me to admit that's probably true.

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