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I've not wanted to post about this for ages because I feel rather embarrassed about it. But I do wonder how many others have similar issues so here goes.


I have been having problems with leakage for about 12 - 18 months and have had lots of tests done which have revealed that my lower bowel has a much thinner inner sphinctre muscle and that I have nerve damage which the consultant believes to be caused by the systemic scleroderma (SSc). So because of these factors I do leak at times which is not very pleasant and does worry me when I go out. We've looked to see if changes in diet may help. I'm having biofeedback at the moment but if that's not improving much he wants to discuss things with me. I keep doing all the exercises etc. but its not going too well so feel very nervous about what may be suggested because one of the consultants I'm under is suggesting an operation but he passed me onto this professor for Lower GI issues so waiting to see him.


I also have reflux and have some swallowing issues.


Does anyone have these problems? How do you deal with it? What have you found helps?



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I use to have this problem all of the time and I found that diet was the primary culprit. I've eliminated whole grains, hard crackers, and all products with artificial sweeteners (especially sorbitol). That's pretty much done the trick for me.


I hope you find your culprits. That's one of those serious quality of life issues.


Big Hugs,

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Hi Jensue,


My heart really goes out to you, as well as all others who must try to deal with this.


I am in the same boat and as Janey mentioned, an adaptation of diet might be something you would want to

implement, through process of elimination.


The whole grains, I truly love, as well as chocolate. However, they are two among other food items that don't do well with me. Yet, I don't demonstrate the willpower to not eat them when I really need it! I just make sure my day will be spent at home! Apparently, I'm just a glutton for punishment! :lol:


At any rate, please keep us posted on what you are able to find out, if you would? I'm sure there are a BUNCH more of us sisters/brothers out there in "Scleroderma Land" who deal with these same issues!


By the way, Jensue, your post was very well phrased. I'm sure many folks would have liked to have posted about this same thing, but just weren't quite sure how to breach the subject matter! Good job.


Thanks much for posting about this!

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Hello Jensue,


I am so sorry you are having this issue, I have to admit that when first diagnosed I began investigating all possible symptoms and leakage was one that I dreaded. Thankfully I don't have this problem but as we all know with sclero you never know what you're gonna get...someone once said that about a box of chocolates.


I did have contact with a sclero sufferer who had this problem and was having an experimental procedure involving electrodes being inserted which she would control with the press of a button and the electrodes would stimulate the muscle to do what it's supposed to do and close. Unfortunately she has not replied to recent emails so I can't find anymore out for you. :(


When I was younger I heard about irritable bowel syndrome and thought how awful, embarrassing etc. having to talk about your bowels?! Well time passed and I was diagnosed with it (although now I think it was early sclero bowel involvement) and talked about it no end, don't get me wrong I didn't stand around at parties talking about it. :) I had no choice but to talk about it as it affected my work, where I went , etc., and I realised there was no shame in it. In fact the more I talked about it the more people realised how problematic it could be.


I really appreciate you sharing this with us, as Janey said it's a quality of life issue and I hope others, there will no doubt be many, can give you real practical advice.


Thanks again.



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Janey and Susie, I have tried to alter my diet but its not made any difference. I do have a balanced diet and can soon become very constipated when I don't have enough fibre. The specialist nurse I see asked me to do a food diary and she couldn't find anything that I really need to change or cut out.


Amanda since my problem seems to be because of the nerve damage I do wonder if this is what the consultant was talking about. If you do hear from this other person I would be interested to know how she finds it.


I actually mentioned this to my rheumatologist a year ago but he said it was nothing and it couldn't be the systemic scleroderma (SSc) because I'd only been diagnosed 8 months previously and this problem comes much later in the disease! But the GI consultant seems quite sure it is related because of other patients he's seen with the same issues. I do seem to have quite a bit of nerve problems which the rheumatologist said was caused by Raynaud's.


It took me a long time to say anything because it is such a difficult topic to talk about and even now have not discussed it with my family apart from than my husband.

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I'm so sorry, Jensue. I understand, as I'm sure many can also relate to feeling disregarded, as happened to you a year ago.

To me, I can only think that the dr has no idea and at that time, I feel they should then defer to a dr who specializes in that area of expertise. Therefore, I trust the dr you spoke of in your first post...is a gastointerologist?


I hope that you are able to get this all resolved soon, as it really can gnaw at us!

Please keep us posted?

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Hi Jensue, I did write yesterday but somehow, my reply, disappeared into never never land. So here goes, again.


I have had IBS, for years, but about 2 years ago, I would have urgency and I needed to know where all the loos were located. It would be a buttock crunching, Monty Python walk, to the nearest loo. Fortunately this was not long lived. About 2 months ago, another bout but different, in that I had urgency, to dash to the loo, always unable to evacuate completely, about 10 times a day. The stool was not formed neither was it diarrhea. It was as if the sphincter was always relaxed. Also, bending, or walking I became a tympani group, all on my own. I had no warning, so unable to use my sphincters! haha It was very embarrassing.



A problem shared is halved. A joy shared is doubled

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Did you ever think 5 or 10 years ago, this would be a serious and important topic of conversation?


I had the problem too. It came in advance of my diagnosis and at the time was blamed on prolapses which were repaired (with some difficulty in the case of the rectocele) during a hysterectomy. Biofeedback was suggested at the time, but I declined


Things were better for a while, but over time have turned into a cycle of many days of horrid constipation with incomplete evacuation when I do have a oh-be-joyful day and manage a bowel movement, followed by several days of explosive diarrhea. Clear the way! Gangway, coming through! Gas? Oh my~ Well, I did wonder what it was like to play the bassoon or a tuba... :lol:


Well, funny thing. I saw the colorectal surgeon who consulted before the hysterectomy when my hubby went for a repeat colonoscopy. She asked why I was using O2 and when I told her of the sclero diagnosis, she lit up like a beacon! She said "well, that explains a lot of things. I put your problem down to poor muscle tone, even though you were so adamant you did the kegel exercises. Sorry about that. I've got to go back and review your records."


So what do I do to manage the problem? Take a motility medication, stay away from foods that I know my gut can't handle, pay attention to where I am in the cycle, and know where every single public toilet in a 25-mile radius is and how far from the parking lot and front door it is! :D


Big hugs and a few blasts on my wind instrument,

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Thanks for your amusing posts - it has brought a smile to my face!


Andyko it is so good knowing that I'm not the only one. That you have got your bowel problem sorted and you feel so much better for it & cope so well.


Lynne I know exactly what you mean, are you still having problems or have you got it sorted & if so how or what have you done?


Jeannie I also get lots of gas which has you say just explodes out, talk about blow you away!


As far the exercises go, I am doing them but it doesn't seem to help so await my next appointment at the end of this month and see what they say then.




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Hi there

Not much of a funny subject in my opinion!

My personal experience is very similar - overnight I started having problems but lookng back I was constipated as a child as well so go figure.

The leakage in my opinion is the muscles trying to work out the stool - which is difficult if the walls/muscles are thicker.

What works for me (and you have to keep a close eye on it) is a daily spoon of ground linseed on my cereal (flaxseed). Also if I get a build up I reinforce it with a natural herbal tea available here in NZ.

Good luck! Keep it natural and avoid laxatives I say!

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I also prefer to go as 'natural' as possible, but remember that many natural remedies have their own set of side effects. It's always best to check with your doctor(s) before starting any herbal remedy or supplement.


I'll tell you one very old nurse's formula for 'regular' bowels. (The nurse in question is now in her late 90's.) She'd mix up a kind of slurry of applesauce, prune juice, and raw rolled oats. She'd put it in a covered container in the refrigerator and her 'victims' would get a good healthy (double entendre intended) spoonful of this every day. One of the nurses she trained (my mum) put her favorite patient (my dad) on this regimen and it worked wonders for him... ;)


Warm hugs,

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Hi Jensue, Still not "normal" but thankfully not as bad as it was. I am carrying on, as usual. It is just one of the things to mention to my dermatologist, when I see him, in a couple of weeks.


We have to laugh at the things we do. If a belch or a blast comes, my daughter will say "oh mum", then realises and asks, "is it your lumps"




A problem shared, is halved, a joy shared, is doubled

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