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Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma enlarged and pain. Maybe flare?


11-03-2013, 07:15 AM   #1
Emma1978
 
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Stoma enlarged and pain. Maybe flare?

Hi all. I've had my Stoma just over a year now. I've had no major problems apart from really high output. I take about 12 loperamide a day so I can work.

In the last 6 weeks I think I have started a flare. Usual symptoms, diarrhea (nothing cures it), exhaustion, tiredness, nausea, cramping and aching bowels, aching limbs and headache. Today I woke up and there was pain in or near my stoma. Like its maybe tight or pulling. I have changed my bag to find it is very enlarged, almost turning itself inside out- does that make sense? Like the more of the insides are coming out. I have had to cut my bag bigger - about 1cm! It pulls when I move, or when I press on it I get a stabbing pain. I've been given amitriptyline to help with the cramping while I wait on a colonoscopy and MRI. my gastro support is great, but we can't do much till my results are back, hopefully in the next 3-4 weeks.

Is this pain common in a flare? This is my first flare with a Stoma and am worried about the size and pain. I suppose it would fit with inflammation - the enlarged size, but it will be scary if it gets much bigger.

Also (sorry this is far TMI) I am having movements out of my rear end! I get odd ones as I have a loop, but now it is everyday, and it's 80-90% mucus, and it's quite an amount. Anyone experienced this?

Thanks guys

Last edited by Emma1978; 11-03-2013 at 08:08 AM. Reason: Forgot to add something
11-03-2013, 08:44 AM   #2
nogutsnoglory
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Stoma problems are new to me but if it's coming out more it sounds like it could be a prolapsed stoma http://www.badgut.org/information-ce...sed-stoma.html. It isn't a good sign that it is swollen and you have pain. I think you need to get that looked out ASAP.

As for mucus, I pass quite a lot and need to sit on the toilet almost daily now. Sorry for the visual but they are logs of mucus. My doctor isn't concerned but it's happening more and more now.
11-03-2013, 09:08 AM   #3
Samboi
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When I had a stoma I had a flare.
It was mucus that exited though - on the same flare schedule that would have happened if I were connected.
Usually 20+ per day, extreme abdo pain, nausea and vomiting.
I was hospitalised, checked for c diff (phew - none present) and treated with antibiotics. After a few days - all better, sent home good as gold. It was horrendous though.
Hope you feel better soon Emma.
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11-03-2013, 09:57 AM   #4
Emma1978
 
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Thanks for the responses. I've looked at the site you sent nogutsnoglary, thanks it helped. I will be monitoring closely and will call my Stoma nurse if things change at all.

Samboi, I have never heard of being treated with antibiotics, is that common? I have only ever been given steroids. I hate prednisolone and will do anything not to use it, but normally encort works. I am stressing at the moment, which I'm sure makes everything worse. I am due to start my second round of IVF in about 10 wks so song want to be poorly and postpone. I have put my self on a low residue diet, it's killing me watch my partner eat nice things, I've just had cheese and white pasta
11-03-2013, 10:22 AM   #5
Samboi
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When I was admitted, I assumed they would hook me up to Pred straight away.
Instead they hydrated me, did some tests and then pumped me full of what I think was vancomycin - which is used to treat c diff.
Even though I did not test positive for c diff - the Vanco worked a treat.
Enjoy all that yummy pasta and white bread (I'm having a flare ATM too - so it's all about low res and Pred)
Hope you get better in time for your next IVF round. 10 weeks is ages away. Hang in there.
11-03-2013, 11:17 AM   #6
Emma1978
 
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Ah I thought there must be another reason. I'm always looking for something to take instead of pred- it's awful. Thanks again xx
11-03-2013, 12:34 PM   #7
highlandsrock
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Hi Emma

I had a similar problem with my stoma in that it seemed to be getting bigger and bigger. (It looked like Mick Jagger was trying to escape from my abdomen). I called the stoma nurse and saw her the next day. She confirmed that it was a prolapse and got me to wear a wide, elasticated belt around my middle and this kept everything in check. It also gave me a lot more confidence that the bag would not detach itself unexpectedly.

I didn't get any real pain though so I'd call your stoma nurse in the morning and talk it through with them. They will probably be able to explain exactly what's going on and put your mind at rest.
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11-06-2013, 07:53 AM   #8
annawato
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Hi Emma, firstly good luck with your next IVF treatment. I have twins (now 22 years old) who were conceived via the G.I.F.T programme. Well worth the trouble of going through the whole experience.
My stoma was prolapsing slightly and I just gently (very gently) pushed the bit telescoping out back into my stoma. (Does that make sense?) No doubt someone will suggest thsi shouldn't be done but my surgeon said it was ok. Maybe check with your doc though if you are worried.
Other than that, try very hard not to stress - impossible at times I know but it really does seem to make this disease worse. Relaxation, meditation, exercise - all may help. Now if only I could practice what I preach.
Good luck.
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you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
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4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
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