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Embarrassing gastrointestinal issues

gastrointestinal bowel urgency scleroderma bowel involvemen

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#1 amberjolie

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Posted 24 January 2013 - 07:02 PM

I have an issue that I was wondering if anyone else has or had and if anyone has any suggestions. My rheumatologist is putting in a referral to a gastroenterologist, and I'm going to see my family doctor next week to ask if she has any thoughts.

Whenever I get the "urge" for a bowel movement, I often seem to have very little time to get myself to a bathroom. Either I will have to go right away, or I will have to pass gas, and I cannot physically hold onto it like I used to. So it can be embarrassing, because a sneeze or cough can send out a "toot". And the other day at work, I got an urge to go, and literally maybe half a minute afterwards, as I was starting to get myself towards the bathroom (which is on another floor), I passed gas, and noisily, too, because I was trying so hard to hold it in.

I don't know if anyone heard, but if they didn't, one of these days, someone will.

Anyone else have these issues? Is it the scleroderma? Or associated with the myositis? Or could it be something unrelated? (I guess there's always that chance, isn't there?)

#2 judyt

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Posted 24 January 2013 - 08:18 PM

Hi Amberjolie,

Yes there are many here who know exactly what you are talking about. From my point of view, at least, it doesn't get any better I am sorry to say. One of the things I learned very early on (i.e. in my 40's and before I knew I had Scleroderma) was that this disease can affect us from one end to the other. In my case it is the sphincters and the actual rectum which have been damaged and now they don't work at all well. As you can imagine it is the worst thing you could ever have to put up with.

I don't know if it would have made any difference if we had known way back then what was causing my problems, but I am inclined to think that if I had had the opportunity to try immunosuppressants I might be doing better now. In the past year I have had a Sacral Nerve Stimulation implant which is an electronic device which is designed to stimulate the nerves at the base of the spine and hopefully improve the ability to 'hang on' as it were.

Hopefully, the doctors you are likely to see now should know about what you are experiencing and be able to give you good advice and possibly some treatment if such a thing is available. One of the things that I was encouraged to do was to consult a Physiotherapist who specialised in Gynaecological treatments and that was quite helpful until I had abdominal surgery and all that work went out the window!!

Here's hoping you can get good help and advice,
Judyt

#3 Joelf

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Posted 25 January 2013 - 12:16 AM

Hi Amberjolie,

I'm very sorry to hear about your bowel problems; it must be one of the worse things to deal with!! :(

Judy has been able to give you some very helpful advice, having personal experience of the problems you're having. Thankfully, I don't have the gut and bowel involvement, so can't help and advise you as she has, but I really sympathise, because I can see that something like that certainly impinges on your quality of life and means that your life revolves around making sure that there's a bathroom within easy reach. I can see that even then it's touch and go whether you get there in time, as well as the problem of passing wind in public.......most embarrassing!! :blush:

We do have many of our members who suffer with bowel involvement and they may be able to suggest other coping strategies for dealing with the problem. I've included a link to Faecal incontinence in patients with systemic sclerosis to give you some more information.

I do hope that when you get your referral to a gastroenterologist, he will be able to help and advise you.

Kind regards,

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#4 Shelley Ensz

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Posted 25 January 2013 - 11:11 AM

Hi Amberjolie,

I'm sorry you're having some gastrointestinal issues. It's very possible that its just a temporary disturbance.

Gas is often due to dietary problems. Even such a simple thing as sugar-free candies can cause a previously quiet person to become noisy. See Mayo Clinic: Gas and Gas Pains.

Bowel urgency can happen occasionally even in healthy people. It's probably most often due to an increase of fiber in the diet; for example, if you started eating 'healthier' lately by having more cereal, beans, fruits or vegetables, that could be the culprit. Google "bowel urgency" for more information on common causes. The combination of gas and urgency together should probably make you first very suspicious of any recent changes to your diet.

If that doesn't point the way to a simple fix, and the issue persists, then see your primary care doctor about it. Scleroderma can cause anything from very mild to very severe gastrointestinal problems. However, each of our new symptoms needs to be evaluated as though scleroderma is the last possible cause. That's because if we or our doctors immediately lay the blame on scleroderma, we may easily overlook the other, more common and even more likely -- and more fixable! -- causes of our symptoms. And I'm sure what you most want is for this problem to be fixed!

I once had a hospital roommate who had abdominal pain. She was moaning and groaning as though she were going to die; and all her relatives made a somber pilgrimage to her bedside. The doctors ran test after test after test. Finally a whole team of doctors marched in with her final diagnosis: gas! Nothing but gas.

Now, the flip side of that is: gas caused her an awful lot of pain and she went to enormous trouble and expense to get to the "bottom" of it (pun intended). So if there is the slightest chance that there is anything different in your diet, this is the time to take a good long look at that possibility first -- as well as any other causes of bowel urgency that you can easily eliminate yourself -- so you don't end up going through all sorts of hoops unnecessarily.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Buttons

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Posted 26 January 2013 - 10:32 AM

Hi Amberjolie,

I've got bowel issues with urgency and leakage and after being referred to consultant and having numerous tests and physio etc had a Sacral nerve stimulator implant. I have had mine for just over 3 years now and it has certainly helped me, my issues were caused due to nerve damage and sphincter issues. It is hard to talk to others about it but the medical professionals are very understanding, just tell them everything so they get a complete picture of the problems you are facing and take it from there.

Judy, I do hope you are finding the SNS helpful.

Buttons

#6 judyt

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Posted 26 January 2013 - 11:59 AM

Buttons,

Thanks for remembering me! Yes I do think that at last I am getting some help from the SNS. If you remember I was caught out by other abdominal issues in the middle of it all this time last year and it has taken a long time to get settled again.

The one thing that I am thankful about is that my surgeon was determined that I would get help so carried on in spite of the other things going on and my negative state of mind. In the last 4 weeks or so I am feeling much more brave about going out shopping and have even had an expedition to a mall to buy some summer trousers!! Big deal!!!

Amberjolie, take note of Buttons comment that the professionals you consult have no qualms about discussing these things and make it easy for you.

Best wishes to you all
Judyt

#7 amberjolie

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Posted 26 January 2013 - 12:14 PM

Hi! Thanks for the replies. As to my diet, if anything, it's a very poor diet, so definitely no increase in fibre here :). But perhaps the things I eat could still be an issue.

The gastroenterologist I will be referred to has an interest in scleroderma, so hopefully he'll be the best person to speak to on this.

And yes, I'm definitely not shy about talking to doctors about issues!

#8 barefut

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Posted 29 January 2013 - 11:24 AM

Hi Amber,

I'm so glad you are heading to see a gastro doctor (like how I avoid spelling it there ;) ). The gastro issues have been one of my biggest complaints. And even though I don't embarrass easily, I too am hesitant to talk about this issue, if for no other reason than not to gross everyone out! :o

Buttons and Judy - thank you for sharing about the SNS. I've never heard of it and may be heading in that direction soon. :unsure: First I need to find a gastro doctor I can trust who accepts Medicaid. I am relieved to know there is successful treatment! I thought I'd just have to suffer along with it.

Off to do some research!

#9 Shelley Ensz

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Posted 01 February 2013 - 12:13 PM

Hi Amberjolie,

I'm thinking of you. Do you have any answers yet regarding your g.i. issues, or have they settled down at all?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 amberjolie

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Posted 02 February 2013 - 08:58 AM

Hi Shelley,

Thanks for asking. I thought maybe things were getting a little better after I had started some Prednisone last week and I had a couple of good days (I thought perhaps it was a muscle thing and the Prednisone was helping). But last night dashed all those hopes when I had an "incident". That was the first time I had one as bad as that, so I wasn't terribly happy with that.

I had eaten something spicy for dinner, though, so I wonder if that led to things going through me too quickly. (I don't like spicy foods but the restaurant made it spicier than I had bargained for).

My family doctor suggested I try an anti-diarrhea pill, so I'm trying that now. She didn't have any other suggestions other than seeing the gastroenterologist.

But I was looking online and it said that one of the causes of fecal incontinence is internal hemorrhoids and I've certainly been battling those for a long time, so I'm hoping it's as simple as that. Still waiting to find out when I can see the gastroenterologist.

In the meantime, I think I'll see if I can find some sort of pad that isn't too uncomfortable or conspicuous (I don't want a plastic rustling sound going on all the time) for those moments when I may not make it.

Sigh. Hard things to go through at 37. Actually, hard things to go through at any age... at least here I can feel that others understand where I'm coming from. :)

#11 judyt

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Posted 02 February 2013 - 12:09 PM

Hi Amberjolie,
Sorry to hear that you have started having accidents or incidents, it is a really distressing development as I well know, and I can really empathise with you about the frustration.

Over the years I have consulted two Colorectal surgeons as well as a Gastroenterologist. The reason for more than one surgeon is that the first one who was so lovely and helpful retired. Just by chance I found another one who is younger and just as kind and helpful as the first one. The reason for the surgeon was that when I was your age I developed a full thickness rectal prolapse (look up 'prolapsed rectum' and you will find all that info) which needed to be repaired. I, like you, thought I had hemorrhoids but that turned out to be not the cause. Over the years things have become steadily worse (I am 68 now) so I would suggest that you need to be quite pro-active about finding the right person to consult. At least, you know that you have sclero, I didn't know until 10 years ago and maybe if I had better advice earlier on it might have been helpful.

The only helpful thing that the Gastroenterologist suggested was that I take a stool bulking agent daily. This is in the form of a powder that you can buy over the counter or by prescription, you mix it up in water or juice and it makes a thick drink. I have found that very beneficial, so much so that I daren't miss a dose. I found anti-diarrhoea meds. made me vomit so gave up on that idea pretty quickly.

A far as protection is concerned, I have been able to find nothing on the market here. There are plenty for bladder incontinence but nothing, except huge nappies, for fecal. I have learned to manage but it is no fun!!

Best of luck to you in your quest
Judyt

#12 barefut

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Posted 03 February 2013 - 08:36 AM

Oh wow gals, In reading your posts I realize I really need to find myself a new gastro doctor quick and get busy on myself. I had no idea internal hemorrhoids could cause that or there was a thing called rectal prolapse. There could be more things going on down there than I even knew about. And just yesterday I had an accident as soon as I stepped out of the car and had to step right back in and go home. As mad as I got, I tried to make myself feel better by thinking of all the 'could-haves', and 'at least's'...

At least I was close to home. I could have been in the grocery store! I could have been going to an appointment. At least I didn't have anyone with me. I could have had the kids or a friend with me! Hard not to think of the 'what-if's' too though. What if it happens in a meeting?! At a baseball game?! On a date?! I gottta get fixed!!!!! I'd rather go to the gynecologist or the dentist - ugh ! Ya know, I'd trade in this problem for more muscle and joint pain anyday.

#13 barefut

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Posted 03 February 2013 - 08:41 AM

I think we gastro issue sufferers could use a little humor today. Here's a past blog entry on a day in the life of me. :happy-dance:

A Slice Of Sclerolife

#14 judyt

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Posted 03 February 2013 - 12:54 PM

Oh yes Barefut you have it down pat!!!!!!!!!!!!

I have decided that anything on my mind to do with food passes the message right down to the nether regions, the message says make room for more :unsure: :( :angry: :o :o

Judyt

#15 amberjolie

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Posted 06 February 2013 - 05:08 PM

Ok, so maybe the prednisone is working after all. After that one bad incident, I've been okay since (I took some anti-diarrheal medication, but only the once, haven't needed it since). The spicy food must've set me off. And of course I'm not going to assume I'm "all better", but I'm quite grateful that things haven't been as urgent lately.

The prednisone also seems to be taking the edge of my fatigue and stiffness/soreness. Yay! Some relief! :emoticons-line-dance:

#16 Joelf

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Posted 06 February 2013 - 11:10 PM

Hi Amberjolie,

That's very good news that you're getting some relief, although perhaps you may need to pass on the spicy food in future!

Kind regards,

Jo Frowde
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#17 Shelley Ensz

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Posted 12 February 2013 - 11:04 AM

Hi Amberjolie,

Have you seen the gastroenterologist yet?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 amberjolie

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Posted 12 February 2013 - 08:18 PM

Got an appointment in June.  Often takes awhile to get into a specialist in Canada.  But still so far so good...



#19 Shelley Ensz

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Posted 13 February 2013 - 10:25 AM

Hi Amberjolie,

 

June is good.  It gives you ample time to entirely heal, from whatever, before you see the doctor, which will make their job so much easier. :emoticon-dont-know:


Just kidding, of course.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#20 red

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Posted 13 February 2013 - 12:52 PM

Hi friends!

 

I too suffer from this embarrassing and quite inconvenient problem.  Both my rheumy and colon specialist have told me that my poor muscle tone in the rectum and anus are due to scleroderma, similar to the poor motility that affects my esophagus.

 

While I've found some benefit from an over-the-counter fiber supplement that my GI doc recommended, as well as biofeedback muscle training, I still have days where I just know it's not a good idea to leave the house!

 

Yesterday I saw my GI for my annual visit - he mentioned a new treatment for fecal incontinence called Solesta.  It's basically an inert, injectable material that bulks up the walls of the anus and narrows it to prevent waste from leaking out.  He did say he's not sure yet if it would be helpful for me, but advised me to discuss it with my colon specialist to see if it's an option. 

 

Has anyone heard of it?  My concern would be..and I will try not to be gross here! ...but what if the scleroderma makes our muscles so weak that we wouldn't be able to expel a movement through the narrowed passage?   I don't want to be in a worse situation that I'm already in!

 

amberjolie - I'm glad you're getting some relief with prednisone!  I always feel better on it myself, but my doctors don't want me on it long term...

 

Right there with you all,

 

red







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