Senior Veteran (female)
Join Date: Aug 2001
Location: Mt. Pleasant, MI, USA
Hi Claire Marie. My heart goes out to you because I've been in your shoes. I also have IBS-D, and in the last few years the "D" had become almost disabling. I can't tell you how many times I've had to leave work (making excuses that I was suddenly ill), or having to call into work in the morning that I was sick, or how many times I've had to change my clothes, throw underwear away, wear maxi pads every day, etc., etc. because of fecal incontinence.
My life is finally better now due to a drug called Colestid. Has your doctor mentioned this one? It's actually for high cholesterol, but has been proven to help some of us that have uncontrollable diarrhea due to gall bladder dysfunction or removal of the GB (I had mine out in '97, and ever since life has really gone down the toilet! - literally). In the last 10 months of being on Colestid, I have had fecal incontinence only 4 times, and all related to a intestinal virus.
I also eat Metamucil wafers twice daily for fiber, and take calcium supplements (which have been shown to help some with "D"), as well as acidophilus capsules. However, my bowels were never under better control until I found out about Colestid. Even those with their gall bladders intact, can still have bouts of uncontrolled diarrhea. Unfortunately, prior to the Colestid, I like you, would have no warning sometimes that it was going to happen - it would just explode out - it could be watery or soupy (sorry to be gross!), but there was no way I could hold it back. My "attacks" usually revolved around meals - does this happen to you, too? If so, you may be a good candidate for Colestid, because it binds to the digestive bile your liver secretes to soak up the excess bile creating your diarrhea.
I also think that my anal sphincter may not be as strong anymore either, because 13 years ago when my son was born, even with an episiotomy, I tore up into the rectum so bad, I couldn't sit comfortably for weeks. I've never had the sphnicter function tested, which can be done by a GI (I think?), but if I'm going to have "D", I probably won't be able to hold it back. However, since the Colestid helps me have formed stools, I can usually hold it, even if the urgency is there. I've never been incontinent of solid stools, only the runny ones.
Claire, if your "D" seems to come about during or shortly after meals, Colestid might be the drug to try. Also, try increasing your fiber intake (via Metamucil or something like that), and taking 2 Caltrate + D (purple/white bottle) or some rip-off of that and see if that helps you have formed stools. I don't know anything about the drugs your doc is considering, so I can't give you any insight about those.
But I know EXACTLY what you're feeling - the shame, the depression, and the discouragement at having to plan your life around the toilet. It used to be horrible riding in the car not knowing if "it" was going to hit, or being at a restaurant/mall/outing and have to try to find the closest bathroom (when even a few steps away might be too far).
In the last 10 months, my life has finally not been ruled by my bowels. I did have an episode of incontinence earlier this week (while dropping my son off at school of all times), but it was because I was getting a "flu" bug that kept me home for 2 days. Otherwise, my self-esteem has returned, and I can get through a day without worrying about when my next BM will hit.
I feel your pain and hope that you can find the remedy that works for you. Please keep me posted on how things turn out.
Good luck to you,