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Embarrassing / Bowel Issues

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The reason I am here is I need to know if anyone else has had this happen because of this disease.


Last night I was laying in bed with my husband and pets.  All of a sudden without warning I realized that I was "going".  I immediately jumped out of bed.  I couldn't stop it.  My husband ran and got some towels.  It was literally pouring out.  I finally just tried to use the towels to get to the bathroom.  I got in the shower and it still continued.  I had NO CONTROL.  


The sclero has robbed me of what "was" my life.  What I can't stand happening is what it does to my husband.  Every day he calls me numerous times to see how I am doing.  He sees me in pain; he sees me not being able to eat due to horrible nausea and pain whether it's by mouth or by infusion; he sees me so tired all of the time and even has to keep nudging me awake at worship services.  But for him to have to clean up after me is just too much.  He couldn't change the kids diapers without having to throw up.  


 I  feel just terrible for putting him thru this.  So now what?  Do I dare to go anywhere?  Do I keep a diaper on?  What kind of life is this to live for me and more importantly for my husband?!  I have no motility in my esophagus and no motility in my stomach.  I was told it will go thru my digestive system.  So is this what happens when it goes thru my intestines?  All I know is I am so tired.


 The last year-and-half it has been one thing after another.  But this issue is too much.  The "in sickness and health" shouldn't mean this for my husband.  I am at such a dark place.  Any input would be appreciated.  

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Hi Peggy,


So sorry to hear of your latest woes but, unfortunately I know just what you mean.   I have been there, although not quite as unexpectedly as you have related.   The worst time was once when I was in hospital and the nurse who had to help me muttered "just my luck".   That really helps!! I don't think.


I understand that it is doubly hard for you with all the issues you have had over the past couple of years, but in my case I have been able to make some changes which have helped.   First of all I think you will need to get back to your medical team lickety-split and let them know what is happening.   Believe me, they are used to it with people in our position.   There is the option of a Sacral Nerve Stimulator which is somewhat similar to a Heart Pacemaker in that it has a battery pack and leads positioned to stimulate the nerves which control your sphincters.   In my case I have to say that I came to this solution very late in the course of my disease and it hasn't helped as much as it could have earlier on I think.


The second thing I do is take a stool bulking agent prescribed by my doctor.   I take it every day and am afraid to miss because I know what can happen.   Usually this medication is to help those with constipation but in my case and hopefully yours too it bulks up the stool and prevents that awful runny rush.


Since this is the first time this has happened to you in such a violent way I think it is vital to get good help.   I was sent at one stage to a uro-gynaecological physiotherapist and I have to say that what she told me did help a little in spite of my sceptisism.


I have been thinking lately, that women who look after their elderly and infirm husbands are almost invisible to society but our lovely husbands, being so relatively few are right out there in view because we women are more likely and more able to talk about what is happening.


Give your lovely husband a big hug and a kiss from all of us because we know he is one in a million.


:emoticon-hug: one for you

:emoticon-hug: and one for him.


Best wishes from the upside down side of world, and the weird and wacky world of Scleroderma.



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Oh, Peggy,

I am so sorry to hear this. I know how you feel for this is the final loss of dignity to me. Although I haven't had what you experienced to the extreme you just did I recently have had episodes of going in my pants or on the sheets, usually just a small amount, and not being aware I was going. The other morning I was standing at the bathroom sink after just having used the toilet when I realized I was going again. Fortunately I could just plop myself down and clean myself up. I had a horrible experience at an airport once when I lost control right before boarding a plane. There are many times in the past I didn't make it to the bathroom. I also have had incidents of sitting on the toilet and noticing a small piece of stool a couple of feet away. How in the world did it get there? I have lost motility in my lower esophagus, my stomach is okay right now.  I have found I have to watch carefully what and how much I eat and when I eat it.


My husband has never changed a diaper (and neither have I!) so I hope I never move to that stage. I think the role of caregiver is so unvalued. People are always asking my husband how I am doing but none asks how he is doing. He is having a very difficult time right now with me going through all the testing and appointments for the lung transplant. 


I would suggest you keep an emergency bag with you containing another set of panties and pants, wipes and paper towels, plastic bag to discard dirty things in, and anything else you think you need. If wearing a diaper would give you more ability to go out and about, do it. I had to wear one after my kidney transplant because I was bleeding so much from the wound. 


Sometimes we all go into those dark places. Scleroderma does change our lives. I hope what others have to say can help you physically and emotionally. Talk to your husband about your emotions over what is going on and your concern for him and try and work out some strategies. 


:emoticon-hug:  :emoticon-hug:  :emoticon-hug:



ISN Artist

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Mio's suggestion of an emergency pack in your purse is something I have kept for several years.   You know no doubt about the activities of "Murphy".    A scoundrel who will cause the opposite of what you plan for to happen.   Well ever since I made up my emergency pack, in a nice little zipped bag which lives in my handbag, I have only ONCE had to use it.   BUT I will never ever leave the house without it.


Another thing which I neglected to say this morning is that I would never in a million years have dreamed that I would be thankful for adult nappies, but I have had those days too.



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Hi Peggy,


I was so very sorry to read your post; it must have been truly dreadful for you; the loss of dignity and control is the very worse thing, I think.


Although thankfully I don't suffer as you, Miocean and Judy do, I can really sympathise with you. Scleroderma must really make your life unbearable at times. I'm afraid I can't add any advice to that which has already been given to you, but what I can do is extend a massive hug to both you and your wonderful husband.  :emoticon-hug: :emoticon-hug:


My best wishes to you,

Jo Frowde

ISN Board Member

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Awe Peggy,


I love you. I'm so sorry to hear about this. I do know of another sclero person that has had the same issue. She does wear protection at times, but it seem to be cyclic for her.


I understand your concerns for your hubby…I although not as affected with symptoms as you are, have felt really bad for my hubby too…it changes everyone's life.  I know your husband cares so much for you. It's probably harder on him to see you suffer, then what he is feeling for himself.


Always thinking of you, and sending you positive thoughts xo

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Thank you for posting about such a difficult topic.  Your story saddens me  and scares me. 


Lately, I've been leaking as well, particularly when I cough (which I do a lot because of my lungs).  And then sometimes when I've been completely unaware that it's happening, only to find it later. 


Heart goes out to you and your husband and all of us.

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Hello Peggy


How awful for you and your husband. Let me first remind you that your husband has a choice to be with you and clearly chooses to do so as he is still there. Yes he did sign up for this because he signed up for any and everything under "in sickness and in health" and so did you.  Judy is absolutely right, if things were reversed it would be a given that you would look after your husband, no questions asked, no applause...


Don't get me wrong, I feel guilt about what my husband has lost, what he has had to do and what he might have to but I also know it's not my fault.


I suspect you guys are still in love as we are so of course your husband does what he does. I do know that we have to remember to thank our husbands and show our appreciation for what they do. I think what they find difficult is being unappreciated and overlooked. Maybe you can do some small gesture for your husband to show your appreciation, one moment of relative normality for you both to share.


Thank you for sharing this and I hope your medical team can help you.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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