Discomfort and issues continue - advice needed

Hi there

I’m feeling a little down and would really like some advice...

I had my subtotal colectomy in Oct 2012 due to severe crohns. I hadn’t 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 – 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 I’ve 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 it’ll really stick out big and proud and everything will be easy. I don’t understand why, and can’t see any connection to food or anything else. I use the same products. I spend a lot of my time “pushing” the output away from my stoma, and out of the gaps around it, to ensure it doesn’t leak. I’ve 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 MRI’ing 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 didn’t have any pain, didn’t notice it outputting at all, and no leakage, no worries, easy.

Which makes me think – I thought the nurses were just wrong all along, but perhaps it’s my body that isn’t working like it should for a stoma person, and still is broken and has been all along, rather than the advice is wrong? I’m so sick of “babysitting” 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 it’s “supposed” to be. The steroids obviously relieved something for a short time.

Any advice appreciated. I really thought 18 months on I’d be feeling better every day.

Hello,

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.

Thank you. You're very kind x

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.

Hth?

Clare
X

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!