Hi all,
Brief history: I had a sudden attack/flare-up of severe ulcerative colitis last March (I didn't even know I suffered from the condition). Despite a month's worth of intravenous steroids, anti-inflammatories, immunosuppressants, etc., the problem couldn't be cured, and by May, my colon had been removed.
Since then, life on the whole has been pretty okay. I think I've pretty much come to terms with the ileostomy and wearing a bag. Last summer, I had a period of reflection off work to recover from the operation and get used to things, that paid off. A lot of people on this forum were kind to me, and reading their experiences made me realize I wasn't the only one going through this kind of thing. I've since returned to full-time work and generally seem to be living a "normal" life - sure, there are a few things I used to do before the illness which I wouldn't be completely comfortable doing now, but compared to the state I was in when the SUC flared up, I am in a much better position.
One problem though, and I must admit I do find it frustrating - proctitis (e.g., rectal discharge) - essentially leftover colitis in the rectum (but hey, it can't be called colitis if you don't have a colon, right?)
Has anyone successfully treated this?
My symptoms are that twice a day I get the sensation of needing to go to the toilet ala a colonista, sometimes the sensation can be quite urgent. I trot to the loo, and sure enough, a red-colored mucousy/watery substance is discharged. This only happens twice a day, usually once in the morning and once at night.
Both my GP and specialist have assured me that this isn't anything to worry about and is "normal" for someone in my condition (as have others when I queried it last year on this forum). But I do find it irritating, taken on its own it's only two visits to the loo a day, but then when you take into account the time already lost to emptying/changing bags, it's a further irritation I could do without and time I'd like to claw back!
So far, I have been prescribed mesalazine suppositories and predfoam enema.
The mesalazine is very messy to apply (literally a pain in the arse!), takes time as you need to lay down for the stuff to absorb, and leaves you with a Tipp-Ex style white mark in your underpants! Not good if you're on the go!
The predfoam is easier to apply but sometimes irritates me (e.g., makes me feel like I need to go to the loo, but I guess that's the consequence of spraying something up there!). Also, my GP advised me that prolonged use could result in the rectum being perforated?
Bottom line is (pardon the pun!), neither medicine has cured this. They reduce the symptoms, e.g., the discharge becomes more brown than red (presumably meaning I'm less inflamed down there), sometimes the need to go is less urgent, sometimes I'll go a day without needing to sit on the toilet, but the next day I'm back to twice a day again.
Do I simply need to persevere with these treatments over a long duration before they'll shift the problem for good? Is there another treatment I should be trying? Or is something I'm going to have to put up with?
I would be interested in reading other ostomates' experiences.
Brief history: I had a sudden attack/flare-up of severe ulcerative colitis last March (I didn't even know I suffered from the condition). Despite a month's worth of intravenous steroids, anti-inflammatories, immunosuppressants, etc., the problem couldn't be cured, and by May, my colon had been removed.
Since then, life on the whole has been pretty okay. I think I've pretty much come to terms with the ileostomy and wearing a bag. Last summer, I had a period of reflection off work to recover from the operation and get used to things, that paid off. A lot of people on this forum were kind to me, and reading their experiences made me realize I wasn't the only one going through this kind of thing. I've since returned to full-time work and generally seem to be living a "normal" life - sure, there are a few things I used to do before the illness which I wouldn't be completely comfortable doing now, but compared to the state I was in when the SUC flared up, I am in a much better position.
One problem though, and I must admit I do find it frustrating - proctitis (e.g., rectal discharge) - essentially leftover colitis in the rectum (but hey, it can't be called colitis if you don't have a colon, right?)
Has anyone successfully treated this?
My symptoms are that twice a day I get the sensation of needing to go to the toilet ala a colonista, sometimes the sensation can be quite urgent. I trot to the loo, and sure enough, a red-colored mucousy/watery substance is discharged. This only happens twice a day, usually once in the morning and once at night.
Both my GP and specialist have assured me that this isn't anything to worry about and is "normal" for someone in my condition (as have others when I queried it last year on this forum). But I do find it irritating, taken on its own it's only two visits to the loo a day, but then when you take into account the time already lost to emptying/changing bags, it's a further irritation I could do without and time I'd like to claw back!
So far, I have been prescribed mesalazine suppositories and predfoam enema.
The mesalazine is very messy to apply (literally a pain in the arse!), takes time as you need to lay down for the stuff to absorb, and leaves you with a Tipp-Ex style white mark in your underpants! Not good if you're on the go!
The predfoam is easier to apply but sometimes irritates me (e.g., makes me feel like I need to go to the loo, but I guess that's the consequence of spraying something up there!). Also, my GP advised me that prolonged use could result in the rectum being perforated?
Bottom line is (pardon the pun!), neither medicine has cured this. They reduce the symptoms, e.g., the discharge becomes more brown than red (presumably meaning I'm less inflamed down there), sometimes the need to go is less urgent, sometimes I'll go a day without needing to sit on the toilet, but the next day I'm back to twice a day again.
Do I simply need to persevere with these treatments over a long duration before they'll shift the problem for good? Is there another treatment I should be trying? Or is something I'm going to have to put up with?
I would be interested in reading other ostomates' experiences.
