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Diet advice needed please

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Hello all,

I know I have mentioned briefly a while back about bowel/motility problems, and know that many of us suffer from this daily.


I am trying to sort out my diet right now, I have 20 kilos to lose, thanks to taking Prednisolone 18 months ago. I also have bowel/slow motility issues, which is now taking its toll on me. I see a good rheumatologist as well as a Gastroenterologist, and have tried Motilium and Maxolan to move things along, which hasn't helped at all. I had a Colonoscopy 18 months ago which showed mild Diverticulitis and have had many biopsies taken, all was normal. I do not have Cealiac Disease.

I open my bowels up to 20 times every second day and suffer from cramps and nausea and also fissures, which can never get a chance to heal properly. I suffer from constipation at first then diahrrhea, I have just finished a course of antibiotics , for Bacterial Overgrowth,. This has helped some and stopped the diahrrea, but not the frequency.


I do not know where to begin with my diet, I have to admit, I turn to all the wrong foods when I feel down, chocolate and so forth, which doesn't help. I am taking antidepressants, which does help, but when things get out of control with my bowels, I can't see the light at the end of the tunnel.


I have Limited Crest Scleroderma, diagnosed 2 years ago, no skin development as yet, only internal things going on.


Many thanks


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Hi, Summer


Here is our page on Diet and Scleroderma for reference. It is frustrating, isn't it? I don't have the bowel problems you have, but I am also struggling with weight gain from a combination of medications and lack of sufficient exercise.


I am not a doctor or a nutritionist, but it seems that with your health issues, it might be a good idea to talk to one or both for help in finding effective methods for loss of weight.


After talking to my doctor, he referred me to the hospital's weight management program and gave me an exercise referral prescription for a local leisure centre where I will be given assistance developing an exercise plan taking my physical limitations into consideration. The weight management program includes a twelve week nutrition class and possible consults with physical therapist and/or psychologists.


I think it is important to have some kind of support system in place. Motivation is a big factor. I also use a desktop nutrition diary which allows me to track my nutritional needs against what goes in my mouth and the amount of exercise I do. The simple act of recording everything that goes into your mouth is often enough of a jolt to set things in motion. Good luck to you.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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This is only from personal experience.

Try walking. DEFINITELY count your calories. Try eating a high protein lower carb, but with tummy problems remember protein is hard to digest, so don't go all out right away.


As far as calories are concerned a good starting point is usually 13 times body weight. If after a few weeks (1-2) you don't see any changes lower it 12 times body weight or even 11 times body weight (though this could be slightly extreme).


If you get a chance, talking to a nutritionist would be fantastic. I find they are more helpful than doctors.

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Hi Summer,


Sorry you are having all these issues. It sounds as though you are in a vicious cycle and need help to pull out. I would talk to a nutritionist and the gastroenterologist about all of of this. You need some kind of regularity. I think mild exercise would be a good start in helping your overall health. You are dealing with alot of issues. I hope you can get the help you need. I always find fresh produce and fruit are always better with me. Anytime I eat alot of chocolate or fatty food my bacterial overgrowth and malasorption act up. I am not perfect by any means but try overall to stay on an even keel. I hope you can find a good way to feel better. Susie54

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Hi Summer,


You must be so frustrated~


I have a friend who has a similar 'going and going' problem, but due to other causes. She does a couple of things to manage the inevitable sore bottom. First, she always rinses the peri-anal area really well after every bowel movement (BM). She uses a 'hat' that fits into the toilet - they are usually used for collecting and measuring urine. She puts warm water in it, cleans up, then just empties the hat into the loo and flushes that water away. If she's out and about, she carries a plastic squeeze bottle with her and fills it with water before going into the stall. She also carries baby wipes and uses them too. Secondly she always uses a thick medicated ointment after cleansing to further protect the area. And lastly, she frequently will take a bath, rather than a shower, in order to really soak the area. She says the heat and total immersion of her bottom improve blood flow, relieve the pain, and soothe the irritated areas.


I can't offer much in the way of diet advice - I'm struggling pretty unsuccessfully too. I feel really hard done by because of all the symptoms of scleroderma that I do have, weight loss isn't one of them and the only one I really want! :lol:


Warm (and calorie-free) hugs. If you hug me back, you get one exercise point for the day. ;)

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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