Hi all,
I've recently been having to get to grips with the prospect of undergoing an ileostomy due to the fact that there does not seem to be anything that can send this damn disease into remission. The only thing that works to reduce symptoms is pred. I have tried all the conventional drugs incl. anti-tnfs but to no avail, as soon as I taper off pred I flare. I was just taken off a clinical trial for a new treatment because it was t working either.
Around 90% of my colon is affected with no trace of the disease elsewhere in the digestive tract. My GI says that surgery is a good option for me since it would completely remove the affected part I.e. my whole colon.
I'd be interested to hear from anyone who's been through, or is also having to get to grips with the prospect of not pooing again!
I've always considered myself to be relatively lucky with my crohns because even though I suffer a fair bit of pain and upset when I'm flaring, I have never had any really nasty fistulae, strictures etc. My GI says this is another good reason for me to opt for surgery, I.e. before these types of complications occur...
I guess I'm just wondering what you guys think, and I'd be really keen to hear your experiences. How easy was it to adjust you'd lifestyle after the ileostomy?
One more thing, I've never found diet to be a direct factor in my crohns - I've wondered if this is because my small bowel functions fine...? If I'm in a flare I avoid spicy curries etc, but they don't trigger any response when I'm not flaring I.e. when I'm on pred.
I am in a situation where I am dependent on pred, and although I've not developed any side effects of this other than a massive appetite, I'm scared of all the long term problems associated with it. My faecal Calprotectin has been between 550 and 800 for three years now, even when I feel fine on pred, and the GI says it may control symptoms but it is not inducing crohns remission.
Would love to hear your thoughts.
I've recently been having to get to grips with the prospect of undergoing an ileostomy due to the fact that there does not seem to be anything that can send this damn disease into remission. The only thing that works to reduce symptoms is pred. I have tried all the conventional drugs incl. anti-tnfs but to no avail, as soon as I taper off pred I flare. I was just taken off a clinical trial for a new treatment because it was t working either.
Around 90% of my colon is affected with no trace of the disease elsewhere in the digestive tract. My GI says that surgery is a good option for me since it would completely remove the affected part I.e. my whole colon.
I'd be interested to hear from anyone who's been through, or is also having to get to grips with the prospect of not pooing again!
I've always considered myself to be relatively lucky with my crohns because even though I suffer a fair bit of pain and upset when I'm flaring, I have never had any really nasty fistulae, strictures etc. My GI says this is another good reason for me to opt for surgery, I.e. before these types of complications occur...
I guess I'm just wondering what you guys think, and I'd be really keen to hear your experiences. How easy was it to adjust you'd lifestyle after the ileostomy?
One more thing, I've never found diet to be a direct factor in my crohns - I've wondered if this is because my small bowel functions fine...? If I'm in a flare I avoid spicy curries etc, but they don't trigger any response when I'm not flaring I.e. when I'm on pred.
I am in a situation where I am dependent on pred, and although I've not developed any side effects of this other than a massive appetite, I'm scared of all the long term problems associated with it. My faecal Calprotectin has been between 550 and 800 for three years now, even when I feel fine on pred, and the GI says it may control symptoms but it is not inducing crohns remission.
Would love to hear your thoughts.