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Old 01-16-2003, 10:59 AM   #1
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Claire Marie HB User
Question Fecal Incontinence Meds

I have been diagnosed with IBS, the kind which is predominantly diarhea, no constipation and fecal incontinence due to obstetrical damage incurred 39 years ago. I also am extremely lactose intolerant. I've been through every test that can be performed and I do not respond to the conventional therapies such as fiber, using Imodium, etc.

Pardon my bluntness but I can't make it to the toilet when it hits me. It (the toilet) would literally have to be strapped to my a**. I go wherever I'm standing or sitting. There are no warning cramps and even if there were I physically cannot hold it back. Needless to say my life has been on hold for these 39 years and I'm 60. I do not travel anywhere and I keep the adult diaper industry going.

My gastro is going to prescribe one of two meds to slow down the motility of my large bowel. It's either going to be Latronex which was pulled from the market but has now been released under strict regulations or it's going to be Tincture of Opium drops.

Have any here taken either of these meds? I'm leaning more toward the T of O because it's been around for many, many years but Latronex has only been out since the mid nineties and was already pulled once so who knows if they'll pull it off the market again.

I should ask, are there any here who have a past experience similar to mine?

Thanks for any info and BTW there are many who suffer fecal incontinence but the subject is more taboo than openly talking about any other subject.



[This message has been edited by Claire Marie (edited 01-16-2003).]
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Old 01-17-2003, 07:19 AM   #2
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Katie G HB UserKatie G HB User
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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,
Katie G

 
Old 01-17-2003, 07:34 AM   #3
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Opium is a narcotic analgesic and it works because it just slows your whole system down. I have to say that I would urge caution with this as it could slow you down mentally too as well as your bowels, unless you get the right amount you can feel extremely drugged a lot of the time.

If I were you I would try Katie's suggestions first. Ask your doc about the Colestid and give it a try before considering narcotics. These should only really be seen as a last resort!

 
Old 01-17-2003, 09:51 AM   #4
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Claire Marie HB User
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Hi Katie,

I have no control even when the stools are formed. I can't even make it to the toilet then because water comes pouring out around with the formed stools. It's been an unusual situation and one which I've never seen posted on though I've searched and searched.

I have this even at home where one minute I'm sitting in a chair and the next I'm running for the toilet with my hand over my butt. I wear diapers even at home. When I do reach the toilet just the pulling down of my pants and sitting on the toilet isn't fast enough and it's running down my legs into my shoes. Gross I know, but that's the reality of my condition.

To the other responder about the caution of using a narcotic based med. The only reason I would consider Tincture of Opium is that following knee replacement surgery this past September, I was prescribed (3) 7 1/2 mg of Lortab (hydrocodone) a day because of the pain for a month and in that month I had no diarhea. I was normal for the first time in 39 years. http://www.healthboards.com/ubb/t_up.gif No diapers... nothing. I had forgotten what a normal bowel movement felt like. After discussing this with my gastro and saying, "Why can't something like that be prescribed in low dosages for my kind of condition?" she suggested the T of O seeing that it's also a morphine based product and has worked well over many years in people with persistent, uncontrollable diahrea.

I figure if I take it I'll take it at bedtime because I also suffer with insomnia. It would be like killing two birds with one stone. At sixty and having the lack of quality of life I have had who cares if it's habit forming? I'd rather be dead than to go another 20 years with this ******, please pardon my pun.

I'll look that med you mentioed up on my search engine, Katie, but I was specifically asking if any here were using either the T of O or the Lotronex. More specifically if any have this condition as severely and persistently as I've had it. You came closeer than anyone I've heard from.
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