Colostomy/ rectal stump and benefits
Would be grateful if anybody can advise or has experience of this scenario.
Comments
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Hi woodbine ,sorry I forgot to say cb esa0
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livlov said:Hi all new here, I was just wondering if anybody on here that has a colostomy or crohns has experience with benefits assessments in relation to rectal stump mucus discarge and whether this counts as being unable to control bowels/ incontinence as any of you that has this knows is often uncontrollable and just well not very nice and often requires more frequent change of underwear and other clothes. It's a case of solve one problem along comes another.
Would be grateful if anybody can advise or has experience of this scenario.
Hi, I have crohn's disease and an ileostomy (stoma) fitted. I also claim PIP and got points awarded for managing toilet needs or incontinence. It does fit in with that descriptors, however it does depend person to person and how exactly it affects you.
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@rubin16 hi thanks for your reply, can I ask if you had a colectomy or whether you still have your colon/ a rectal stump? I still have mine at present as my colostomy was supposed to be temporary to help heal fistulas which were causing sepsis but I feel it will be permanent as these are stubborn things that do nothing but drain all the time. The diverted part of the colon still produces mucus so still things pass through the back passage often unexpectedly, oh the joys0
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You can see the descriptors here for the Support Group for ESA. https://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-glossary/support-group-descriptors
Please note, that everyone's conditions affect them differently, for this reason you can't compare 2 people because it's not about a diagnosis. This includes ESA and PIP.0 -
livlov said:@rubin16 hi thanks for your reply, can I ask if you had a colectomy or whether you still have your colon/ a rectal stump? I still have mine at present as my colostomy was supposed to be temporary to help heal fistulas which were causing sepsis but I feel it will be permanent as these are stubborn things that do nothing but drain all the time. The diverted part of the colon still produces mucus so still things pass through the back passage often unexpectedly, oh the joysI still have part of my colon, but most have been removed. This is my second stoma, I had one then had it reversed but fell very ill again and had a bowel perfortation and structure so had to have another. I am told that I could possibly have it reversed again however I have never persued this as it tends to keep me more well with a stoma. Just adapting to one was a challenge at first like knowing places wheres there is a toilet and always carrying a bag with supplies in with me when I go from home. I also have mucas now and then and still need to use the toilet normally at times. The only main problem I have is becuase mine is the small bowel (ileostomy) its more watery/liquid and it tends to leak at times. Its also very active and I have never had a full nights rest since having it without the need to wake up during the night and go toilet to empty it. Other than that its just adapting and managing it and I have had it now for around 7 years so go used to it now and people have stated that unless I told them I have one people would never of realised.One of my biggest problems is when I try find a girlfriend and having to tell them I have one, I just feel really self consious about it and always worry how they would feel about it and worry it would put them off me.0
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@rubin16 thanks for sharing, I can relate to so much of what you have shared. I think it's great when people tell me they would never guess I had a stoma but part of me always thinks if only they knew what we go through on a daily basis, all the planning ahead , anxiety, all the other non bowel symptoms crohns throws our way, the fatigue, and don't get me started on the parastomal hernias. It's like we're ducks bobbing along on the surface but paddling like hell underneath0
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Have you tried those anti-diarrhea tablets you can get from B&M (6x tablets for £0.59)?
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While I think that might be helpful in some cases, as someone with Crohn's disease I wouldn't be taking any medication that could affect my bowels without consulting a doctor first! Can't always be certain how it will affect the bowels. So perhaps not great for this situation.
In future, it is best if you say what worked for you, then straight up suggesting medication without further context. As we do have a "no medical advice" rule.
For instance, I have Crohn's disease, in a post about Crohn's disease and medication, I would maybe say something like,
I take adalimumab and it's done wonders for me. I don't know if it's something your doctor has considered?
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My Surgeon, my stoma nurses, and specialist consultants, all told me to take these tablets, but I did have ulcerative colitis instead of Crohn's. But I would imagine, once you have an ileostomy, you are also cured like in UC.
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Ah I was editing my comment again sorry @JF7891, that actually provides the context I was talking about!
Unfortunately with Crohns there is no cure, as it can affect the entire gastro system. You would have to take out the entire system from mouth to anus to cure it, and that's just not possible.
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Thank you @Jimm_Scope I had no idea, shows what a blunt ignoramus I was… so sorry. Is there any other treatments you receive?
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Don't call yourself an ignoramus @JF7891 ! There's many conditions I don't know about either.
I don't take anything more than adalimumab anymore. But I have had to be on steroids before when it was really bad, tried aziathiaprine for a bit, but that doesn't help at all. Which is why they decided to try me on adalimumab and it helped.
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Did you hear about that new discovery of this protein that might be the cause of all of this?
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Yes I did read that! I was quite excited by it. From what I read they're hoping there will be better, more targeted treatments that will affect the immune system less?
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Yes indeed, the fact that we can screen for heart problems with CT and MRI scanners together with AI image analysis now, makes me hope that soon, they'll detect inflammation as well, and hopefully making tests less invasive, but most importantly be able to follow the inflammation along to it's actual origin inside the body
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