Skip to main content

History - total colectomy in 2013, been on flagyl since. I can usually take 1-2 500 mg per week and have no incontinence and zero other problems. Flagyl isn’t working anymore. In the past I coupd switch to a new antibiotic for a couple weeks and go back to flagyl and it works again. I have had multiple scopes and each time my pouch looks perfect. My dr suggests it’s either IBS or SIBO. Any thoughts? Comments? If you’ve had this, what do you do?? I can’t keep getting up every hour to change clothing anymore. I’m also 5 weeks pregnant with my 4th (all post takedown). 

any help or thoughts are welcome! 

Original Post

Have you been put on anti-spasmodics?  The fact that the incontinence is coming at night suggests IBS or spasmodic pouch (excessive motility), and is correctable by taking anti-spasmodics like bentyl or levsin 45 minutes before meals and at bedtime.  I had this issue in the years after takedown, not so much since.  The failure of the antibiotics tends to discount SIBO. 

Because you are pregnant, they may not want you on those kinds of drugs as they have side effects that can make you loopy/lethargic.  Being pregnant could complicate things in terms of treatment. You may have to deal with it for the balance of the pregnancy.  I am guessing if they did not put you on anti-spasmodics, that could be why.

I found that donnatal was better than bentyl or levsin for spasmodic pouch (less side effects).  It was taken off the market at some point- not sure why- and I am not sure if it is available now.

Last edited by CTBarrister

Just read that levsin should be given to a pregnant woman "only if clearly needed". By the sound of that I would not take it if I were you, until pregnancy is over. As far as antibiotics, some are considered safe during pregnancy, some are not:

https://www.mayoclinic.org/hea...egnancy/faq-20058542

You need to be very careful and discuss with your doctors the impact of any potential medication on your unborn child.

Last edited by CTBarrister

I have incontinence at night pretty regularly. I have to wear Depends in order to sleep. I've been doing this for years so it's become normal for me. However, I notice that I am not incontinent when I do the following:

- Regularly taking Metamucil - Metamucil has done wonders for me in helping give my stool more form. 

- Take imodium before bed - I can usually get through the entire night on only one imodium depending on what I ate that day.

- This one is difficult for me - Don't eat anything after dinner and don't eat dinner later than 7 pm. 

If I am doing the above things, I don't normally have an accident during the night. 

Sometimes if I feel a little backed up I'll do an enema before I go to bed and make sure I feel more cleared out before lying down. Hopefully this helps some. 

When one antibiotic alone stopped working for me, adding a second one did the trick. Neither Cipro nor Flagyl have completely green lights during pregnancy or breast feeding, but lowering the dose might help your situation while managing the risk. Bentyl is okay during pregnancy, but I’m not convinced it’s likely to help.

Thanks for the thoughts and ideas. I’ll run some of these by my doctor And try some on my own (those I can do without contacting a dr first).

I’ve been on flagyl during my previous 3 pregnancies. I had some success with flagyl and amoxicillin surprisingly. My dr now wants me on a minimal amount for obvious reasons. 

as for depends - unfortunately my incontinence isn’t just a little. I wake up to almost a full bowel movement 3-5 times a night. I have to change clothing entirely and often sheets/pads as well. 

 

I appreciate your help! Any more is also very welcome!

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×