Too many nightly toilet visits, advise?

Former Member

Hi, I have had an ileorectal anastomosis since 2005. So I do not have a j-pouch but instead have the ileo directly connected to rectum.

My problem is that I have to go to the toilet too many times each night, 3 or more every nigh(I go 7 times on the days aswell but that does not bother me).

Sometimes I get a very mild inflammation in the rectum but are locally medicating for that (mesasal supps).

For some weeks ago I started to take Questran and that actually helped a lot (0-1 toilet visits at nights). But after three weeks it seemed to not work anymore and I am back to 3+ visits.
I am also taking 3 loperamid and 12 ml coccillana etyfin before bedtime to 'slow down' the bowels.

Have you got any ideas for what could help me? I will talk to my doctor but it is always good to make some research before :-) .

Every since I got sick in UC 1999 I have gotten use to being up at nights. But after the theee weeks with Questran, when I actually slept a whole night for the first time in 13 years I have gotten my hopes up :-).

9/13/125:46 AM

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Former Member

of course, we have different systems, but two things that worked for me and my jpouch: 1. chia seeds to concentrate my bathroom trips during the night and day. chia also worked to cut down irritation and itchiness, at least for me! 2. using lomotil up to 8 pills a day. good luck.

you might also want to keep a food diary. perhaps you can see a pattern (for example, coffee makes you get up three times, green tea makes you average just once). i hate keeping a diary myself, since it is time-consuming and patterns are super long and hard to find, but if you have spend 13 years tackling this, perhaps that'd be useful to attempt at this point in time.

good luck!

9/13/1212:40 PM

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John95Member

Ingrid-Marie,

What condition did you have that your doctors decided to perform an ileorectal anastomosis?

Is the inflammation totally under control when you use the mesalamine suppositories?

I would ask your doctor about dicyclomine; it helps to control the spasms. Also, you might ask for diphenoxylate-atropine (brand name Lomotil), which I believe is much more effective at slowing down the gut than loperamide. Your doctor will have to get it on license though, as it is not readily available in Sweden (it is a low-level narcotic, but you don't feel any high from it). It is not as powerful as the ethylmorphine you're currently taking.

Lycka till!

9/14/128:19 PM

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TE MarieMember

I think you are having cuffitis (UC) as the frequency returned and you are taking mesaamine suppositories.

I think you have UC in your rectum. They removed my colon and left 2 cm of my rectum attached to my rectal cuff. They stapled my j-pouch to that 2cm. That we bit of rectum has the mucosa that has the ability to have UC and you have an entire rectum of it.

I know how waking up all the time is and how it affects your rest. Some people have suggested that instead of eating dinner earlier in the day to eat it later in the day. Also with the help of imodum and/or you could try fiber as well, coupled with your laying down it might help you during the night.

I have times when I am going and going and have noticed I'm fine until I stand up and need to head to the loo.

It sounds like the suppositories are keeping your UC at bay - I am so jealous of you