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kipcakes

Bowel Incontinence

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Hi all, anyone have problems with bowel incontinence and have any successful treatments for it. Really a problem that I am having trouble dealing with.

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Hello Kipcakes

 

Have a read of this thread about temporary sacral nerve stimulation and the following thread about sacral nerve stimulation surgery. Our member Buttons had these procedures for bowel urgency and leakage which may be of help to you.

 

I'm sure she and others will also join in soon.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Kipcakes

 

Like your name! Sorry, I can't offer any help with that one but like Amanda, I have no doubt someone else will soon.


Sending good wishes your way!

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Hi Kipcakes,

 

I have a problem with bowel urgency and leakage and my rheumatologist put me on a drug that has helped a lot. About a month ago I thought I would go off it to see if the problem had cleared up...and because it is 4 big tablets a day. Well the problem came straight back so I am now happily taking the pills again and the leakage has stopped.

 

Hope you find something that works for you.

 

Helen

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Hi Helen, Thanks for the suggestion, mine is not some much a leakage, as no control when it hits. Quite embarrasing, need to get to bathroom quick. Always have to have a plan when I go out. Also work full time, I have been carrying a change of clothes with me for emergencies.

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Ah, that last description rang a bell (sounded like a toilet flushing!). I've developed IBS this year and that urgency thing is part of it. The GI consultant prescribed an anticholinergic/antispasmodic drug that not only helps the bowel spasm/urgency/incontinence, but also helps with some similar bladder issues. I take a motility drug, the anticholinergic drug, and live culture probiotics and for the most part the combination has really helped. I've modified my diet a bit too.

 

Warm hugs,


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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Kipcakes, when it goes beyond just the urgency you will wish you had already talked to your doctor about this. It isn't as hard to do as one would think. After cultures and possibly a colonoscopy then prescribed medications are usually in order. Some times it is a matter of a small bowel infection, or bacterial overgrowth and an oral antibiotic will clear your problems right up. Some of us take several pills daily for dealing with issues of motility. This could be a simple fix once you seek medical advice. Write down all issues you are dealing with and the doctor can fix you up quite quickly. Good luck and I hope your fix is a simple one. Don't wait until your urgency turns into a nightmare for you. Sometimes the urgency is the beginning of another issue and can be rectified early.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl,

 

Thanks for the advice, I will make an appointment with the gasto right away. I don't seem to get a whole like of direction. Very frustating. I see me rheumatologist every 3 months and she takes my blood everyother visit but does not address my systoms. Guess you have to take it on your own to decide what specialist to see. Also have a severe problem with itching, scalie scalp and other areas of body. Did see a dermatologist and he advised me to use a medicated shampoo and prescribed a foam. NOT HELPING. Off to a health food store this morning to see if they can help with diet or natural medications. I appreciate your help and advice and will see a gasto doctor. Thank You

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Hi Kipcakes,

Incontinence of the bowel!!!!! Tell me about it!!! I have suffered with this problem for many years and for the first time ever, I was able to say to my Gastro doctor last night that I think I have it under control. I have looked into every type of surgical therapy and have had some procedures which helped temporarily but now I am at the stage that my bowel is so rigid and it's muscles so atrophied that there is nothing more to do surgically that will help. I am 66 now and have had real problems since my early 40's so I think it is just the progression of the sclero which is causing it.

 

Right now I think that diet, exercise(walking) and pelvic floor exercises are the only things I can do that will make any difference. I avoid too much fibre (contrary to general advice to NORMAL people) avoid too much fluid (ditto) I eat one Kiwifruit every morning with my breakfast and have a Kiwi drink that is an extract from the fruit, has no artificial additives and contains natural enzymes and prebiotics which aid digestion. Developed here in NZ by Doctors and researchers. It is yummy and helpful, I think, so would be worthwhile making enquiries about whether it is available to you.

 

I can at the moment last for about 2 hours between visits to the bathroom, and I can walk for about 20 minutes without getting into trouble. Trips in the car have always been the worst, after sitting for an hour or two, then getting up to walk around I have to know where the toilet is!! My husband is very good at stopping where we know there is somewhere to go, and if we are in a strange place he will do some scouting around for me.

 

I know that lots of Sclero people have trouble with bacterial overgrowth etc. but not everybody, so you really do need to discuss every facet of possibilities with your Gastroenterologist. If you don't have luck with the first one, don't hesitate to look for another one. I am onto the 3rd one. The first man I saw years ago was lovely and helpful but we didn't know about the Sclero in those days. He retired and I went to another man in the same practice and he was hopeless. Now I see a Gastro who I first met in the Public Hospital system and who has a small private practice as well, so I pay to see him when I want to and as well get called to see him annually at the Hospital. Our health system here is very similar to the British one and very different from the US system.

 

My thoughts are with you and all those of us who have this problem, I think it is just about the most devastating of all, I can't put into words why - it just is!!

 

Best wishes from Downunder

 

Judy T

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Thank you so much Judy. I have an appointment with a new gastro dr now. My old 1 was useless, says probably irritable bowel but ran no tests. Hopefully the new 1 will be better. I definetly can appreicate what you are going through. Hopefully things stay under control for you. WIll let you know how I make out. Hugs

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Hello Kipcakes

 

I was diagnosed with irritable bowel many years ago, of course I know think it was erly manifestations of sclero but then I would. The doctor who diagnosed me said that a diagnosis of IBS is given in the absence of any other cause like cancer, chrones etc for the symptoms. In order to make a diagnosis in the absence of everything else you have to rule everything else out first. Amazing your first gastro doctor ruled everything else out without doing a single test, good call getting another one.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

I thought I would let you know that I have this quite often, in fact I was diagnosed with IBS for quite a few years now, but the symptoms were getting so bad, (I also work full time)so I know how hard it is. I ended up having to have a colonoscopy which showed that I have colitis. My Primary care giver said that the IBS, colitis, is all disease-related. I can really relate to your plight. I also have to plan out everything, when I eat, where I am going, how long will it take me, will I make it there before I have to go again. It is very embarassing and sometimes I do have an accident. Stress seems to make it worst, along with eating dairy, raw vegs, lettuce, just to name a few. Although sometimes it seems it does not matter what I eat. Have you tried over the counter anti diarhea meds, I find it does help a little.

Good luck, to you and so sorry you are suffering with this also.

 

Susie

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Hi

All you people who have been told their problem is IBS - have you ever tried a low starch dietary regime? I hope this idea does not violate the rules of the forum.

 

Our daughter has had the same sort of thing for much of her life, worse now that she is an adult and she has been told it is IBS. All through her childhood I tried every regime known to Mothers!! No dairy, no wheat, lots of raw food, no raw food etc. etc., and the only one which was anywhere near successful was what they call the 'stone age diet'. That means no dairy or grains, lots of meat and fruit and veges. She was great on that but it is too hard to keep to when you are a busy young mother.

 

Recently when she was having lots of very bad episodes and I had to child-mind frequently (funny how that concentrates your focus!!) I was given a book which advocates a low starch regime. It has made a huge difference to her life and maybe it is worth researching.

 

I know that our scleroderma causes all sorts of odd things to happen to us and sometimes another idea proves to be helpful.

 

Best wishes from Downunder.

 

Judy T

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Perfect, Thanks for the advice, I have an appointment with a new gastronentrologist on the 25th. Want to rule out anything that may be causing it 1st, then will got the diet route to see if deleting certain foods help. Will let you all know.

 

As a side note, had a great day yesterday, felt normal!!! Happens every 3-4 months where I have a great day, energy, little pain. Live for the little things.

 

Hugs to all

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Hi Judy,

 

Strange that you mention starches as a possible culprit because I have noticed they do increase the Hindenberg Effect (gas!). I'm slowly trying to modify my diet to have more of the so-called good carbohydrates and less of the waste-of-calories carbs that seem to be the ones that set me off. Would you send me a PM with the name and ISBN number of the book you mentioned.

 

Of course, we should all be careful to eat a balanced diet and yes, we do have a section on Diet and Scleroderma! :happy1-by-lisa-volz:

 

I am fortunate to go to a center of excellence that automatically schedules a nutritionist appointment for their patients once they are diagnosed. That's been about 4 years ago for me and with worsening GI symptoms, I'm going to ask for another session. I love cooking (and eating), but feel like I need some advice on possible ways to modify my diet and still have food that the rest of the family will enjoy.

 

Warm regards,


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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