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lar syndrome immodium/fiber supplement routine

tj65
Posts: 2
Joined: May 2021

hello,

I had a LAR surgery in July 2021 for rectal cancer st g 3 with lymph nodes. I was given an ileostomy, post ileostomy takedown in October , I have little to no control of my bowels. I take otc immodum as my insurance will not cover it, 3-5 times a day. I am working with a nutritionist who told me to take benefiber 2 TBSP at night, but this caused me to be up all night. does anyone have a good routine they can recommend? I would be grateful.

 

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

I do so hope Annabelle pops on the foum and see's your post, as she is definitely one who can relate to multiple bathroom trips. 

I suffered most after treatment, but some days I can go up to 5 times. Other times, I feel like I need to go, but can't - happening right now, actually. 

The only thing I have tried myself, is to keep a record of everything that I eat, and see if a pattern emerges. I pretty much know what triggers a 'Bathroom Day' and what triggers constipation. After seven years, you would think I would have it down, and keep away from the trigger foods, but alas, most of them are things I like, and don't want to give up. 

Hydration in the form of water, is always a good thing. 

I am sure there is medication out there, and other's can share their advice on that front. 

A nurtitionist is good, but remember, at the end of the day, you know your body the best. If their advice doesn't work for you, move on to something else. 

I wish you all the best. It is a long and often times arduous journey. 

Tru

abrub's picture
abrub
Posts: 2175
Joined: Mar 2010

Is what my dr prescribed for me. It's cheap and effective,  without immodium's side effects.  .3 - .6ml 4x/day.  Ask your Dr about it.

Shamrock88
Posts: 1
Joined: Jan 2020

My husband sounds exactly like you..Stage 3b, ileostomy reversal in October, and having approx 4 days/week of going to the bathroom 4-5 hours at a time. He also tried the fiber--Metamucil, 2 TBSP/8 oz water at night and Imodium in the morning, but like you, it made him go to the bathroom all night. So he reversed the routine and takes Metamucil in the mornings and Imodium in the evenings around 6 or 7:00. This routine at least allows him to work virtually w/out having to get up during calls and go to the bathroom....his bathroom trips usually go from around 4:00-9:00 pm. He has an appt with his surgeon tomorrow and is going to ask if there's a better way to handle this, as well as how bad it is to continue taking Imodium on a daily basis. Best of luck--you're not alone! Let us know if you hear of a better way of dealing with this, and I'll post what the surgeon says. 

LisaK24
Posts: 1
Joined: Jun 2021

There is a FB group called " Living with Low Anterior Resection Syndrome" that you should join ( it is a private group so you have to request it). There is a ton of information there from people dealing with this. Lots of different ways to cope with it.  I have found some things that have really made things so much better there. I hope you do as well!

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