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.
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.