Crohn's Disease Forum » Surgery » Stoma Subforum » Discomfort and issues continue - advice needed

03-28-2014, 09:51 AM   #1
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persephone300's Avatar
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Location: wiltshire, United Kingdom
Discomfort and issues continue - advice needed

Hi there

Iím feeling a little down and would really like some advice...

I had my subtotal colectomy in Oct 2012 due to severe crohns. I hadnít had a history of crohns in my small intestine. My stoma was more like a opening indented in my skin (and I posted pics), and so I suffered for months with severe leakage, burnt skin, and it shrunk to about the size of my small fingernail. I was also getting discomfort when it outputted Ė so they did a revision in March 2013, and it was wonderful, really big and sticky out and all problems seemed to stop, although I could still only get to changing my bag once every 2 days (on a good day). The surgeon mentioned that my tubes had narrowed/gotten twisted and that would explain the discomfort.

Anyway, since that time Iíve just put up with it, my stoma has shrunk a lot, and some days it barely pokes out from the skin, meaning lots of output collecting in a gap between it and my convexy bag, and when it outputs, I get a really intense feeling of pressure which is often quite painful. But then randomly for a week or so itíll really stick out big and proud and everything will be easy. I donít understand why, and canít see any connection to food or anything else. I use the same products. I spend a lot of my time ďpushingĒ the output away from my stoma, and out of the gaps around it, to ensure it doesnít leak. Iíve also been getting an ache in my tummy, which resembles the ones I had pre-op.

I mentioned the latter to the gastro in Nov who said it might be worth MRIíing my small intestine, but only if we have to. The stoma nurses, although supportive, seem to have given me conflicting advice all along, telling me that my output should be like this or that, and my output has never been like that.

I had the flu last week and took prednisolone for inflamed lungs and my output seemed to miraculously thicken but also be smooth (which never happens), I didnít have any pain, didnít notice it outputting at all, and no leakage, no worries, easy.

Which makes me think Ė I thought the nurses were just wrong all along, but perhaps itís my body that isnít working like it should for a stoma person, and still is broken and has been all along, rather than the advice is wrong? Iím so sick of ďbabysittingĒ my stoma, and the discomfort of it working all the time. It might be that my pipes have gotten twisted again, or that I do have crohns elsewhere, which is why my output is never like itís ďsupposedĒ to be. The steroids obviously relieved something for a short time.

Any advice appreciated. I really thought 18 months on Iíd be feeling better every day.
Diagnosed IBS 1999, panic disorder 2004, finally,Crohns 2006.

Taken numerous drugs all had side effects/hasn't worked so had subtotal colectomy 19th Oct 2012.

Probs with inverted shrinking stoma, daily leakage, burns, pain, miserable. Revision March 2013 and much better quality of life, but occasional leakage, burns and a stoma that refuses to stick out every day is the norm.
04-01-2014, 04:00 PM   #2
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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I'm sorry that you aren't feeling better, and I'm also sorry that you haven't had any responses yet .

I don't have any personal experience with stomas so I can't answer everything for you, but what I can say is that if you feel something isn't right, then generally you should make sure you talk to your GI and the IBD nurses about what's happening, speak up about things not seeming right. You know your body better than anyone and if you think something is amiss then listen to your instincts. Don't be afraid to ask for second opinions if you feel that is needed.

As I say I don't have personal experience here, but hopefully my reply will bump up your post and others who do have experience will see it and be able to offer you better advice. I just wanted you to know that someone had read your post and that I'm supporting you.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-01-2014, 04:03 PM   #3
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persephone300's Avatar
Join Date: May 2012
Location: wiltshire, United Kingdom
Thank you. You're very kind x
04-02-2014, 03:35 AM   #4
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FruitLoop's Avatar
Join Date: May 2008
Location: Crewe, United Kingdom
If your output thickened whilst on steroids that sounds to me like you are flaring?
Have you had bloods done recently? I'd push for the MRI?

I had a stoma that was a nightmare but switched to salts confidence bags and all sorted (few other bits in my routine) - first time I've ever not had leaks (although I've just posted about faulty batch splitting!)

My stoma was leKing constantly, sore skin etc - I changed to these bags and got my stoma nurse to draw the template for cutting the hole - I'd been cutting it far too big.
I now use detmaguard wipes which have extra stick, a ring of paste on the baseplate around the stoma and these bags mould to your bodyso fit into creases and dips.

I've had 3 stomas and these are by far the best bags. I also use absorbagel sachets after every empty as thickening up the output lessens the strain on the flange of having really watery content.


04-08-2014, 06:55 PM   #5
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littlefreebird's Avatar
Join Date: Jun 2011
Location: belfast, United Kingdom

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sounds like a flare to me too, I had my surgery in 2011, despite feeling a thousand times better than I did pre-op I was told last year my crohns was active and I having a flare after I discovered a hole in my stoma which turned out to be a fistula, because of the ileostomy the symptoms were presenting in a different way, I hadn't noticed. I would get that old familiar pain (the ones I remember getting pre-op) the same as you describe. have you had your blood tested lately? checking inflammatory markers in your blood would be a good place to start. hope you get some answers soon!
"We're all in the gutter, but some of us are looking at the stars."

Crohn's since 2000 (aged 10)--> full colon & rectum removal 2011.

Crohn's Disease Forum » Surgery » Stoma Subforum » Discomfort and issues continue - advice needed
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