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Alice02

Severe constipation

18 posts in this topic

Hello everyone, I have severe constipation for a long time now. I have tried everything over counter and nothing has worked yet. I would apprciate your input on this subject.

 

 

Much love,

 

 

 

Alice

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Hi Alice ,

 

The only thing that worked for my son was OTC Miralex.....taken every day for the rest of his life!!!

 

Take care, Everyone.

Margaret

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Hi Alice,

 

I'm sorry you have a problem with constipation. You say you have tried everything over-the-counter. But, have you consulted your doctor, and hopefully, a gastroenterologist, about this?

 

Please keep in mind that I have no medical training. But as I understand it, the treatments can be very different, depending on what is causing the constipation. It can be caused by scleroderma bowel involvement (poor peristalsis, bacterial overgrowth, malabsorption), dehydration, lack of fiber, insufficient exercise, food sensitivities, poor diet...or as Tangelo indicated, a dietary prune, oatmeal and apple juice shortage ;) .

 

Even with scleroderma, it is usually possible to address the problem with increased and diligent attention to lifestyle measures. But some of us require *less* fiber, and some of us require *more* fiber, etc. and some of us also require more liquids, probiotics, digestive enzymes, antibiotics, medications, or exercise.

 

It can be dangerous to increase fiber in the diet without also increasing fluids -- or to increase fiber too quickly, or in the presence of a possible bowel obstruction...and over the counter laxatives can sometimes do more harm than good, to the point where the body won't hardly work without them.

 

For many of us, the answers, in working with our physicians, tend to be complicated to figure out but easy to maintain once we figure them out.

 

If this has gone on more than a week or two, please see your doctor about this and ask for a thorough evaluation and proper treatment program.


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.

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Hi Alice, Like Shelley , I would recommend consulting a gastroenterologist. I had had increasing problems with constipation. OTC laxatives really did very little for me and often gave me very painful colic. My rhematologist referred me to the gastroenterologist. following a number of investigationsI was prescribed Movicol (I'm in the UK, so don't know its equivalent in the US). It has made a huge difference.

Lizzie

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Yes, Miralex, I agreed and take it from one who knows what you're going through,


Tru

 

It is what it is...........

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Alice, I can't think of much to add. Everyone has given you good advice.

Please do talk with your gastrololgest about it. I hope you will soon feel better!

Sadie

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Boy am I glad to see this thread. I quit smoking June 23 and have been having this problem ever since. :( I read up on nicotine withdrawl and this is one of the symptoms since nicotine is a stimulant. The body eventually re-regulates itself after a few weeks but in the meantime I'm going to try the Miralax. Thanks for the suggestion everyone.

 

Karen

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Yes, Miralax would be my suggestion as well. It works wonders for me. Sometimes I have to take it up to 4 nights in a row, and then I'm fine for a few weeks. I hope you can try it and it helps you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I may be wrong (I often am!) and I have no medical training at all. But despite that ongoing hardship blink.gif , I can't emphasize enough that scleroderma patients with gastrointestinal symptoms need to be working with their scleroderma expert and gastroenterologist to determine the cause and treatments for g.i. symptoms -- including very commonly self-treated issues like constipation or diarrhea.

For example, increased fiber can cause severe complications and even death to scleroderma patients who are suffering from intestinal obstruction -- which is quite common with scleroderma.

So although it might be okay for a perfectly healthy person to treat an occasional issue of bowel disruption with over-the-counter products, it is *not* okay for scleroderma patients to be self-treating any issues that could be signs of worsening g.i. problems or even impending -- and possibly fatal! -- obstructions.

It can be equally as dangerous to rely on the advice of a physician who is not an expert in scleroderma, in this particular regard. So any variations from normal functioning should be taken seriously and discussed with your medical care team before initiating any dietary or over-the-counter strategies.

For example, an excerpt from --
Dietary advice in systemic sclerosis: the dangers of a high fibre diet
A 56 year old woman developed systemic sclerosis aged 43. She was treated symptomatically but developed increasing problems with constipation. She consulted with her doctor who advised a high fibre diet and prescribed fybogel regularly. She was admitted shortly afterwards with acute abdominal pain and constipation. “Colonic atony†was diagnosed and a temporary colostomy was performed. This was then converted to a permanent ileostomy the following year. Since then she has had to stick rigidly to a low fibre diet. Ann rheumatologist Dis 1998;57:641–642

***
For those who don't know, an ileostomy means that she was no longer able to have a normal bowel movement; everything is diverted into a pouch which is worn on the outside of the body. That is a pretty high price to pay for following her doctor's advice to increase fiber and use a bulk-forming laxative!

So although we can share what has worked for us, all of our medical situations are different and nobody should take anything on this forum as personal medical advice -- everything needs to be carefully reviewed by our medical team...including what would normally be of very little concern for a totally healthy person.

For more information, see Scleroderma Bowel Involvement and Scleroderma Experts.


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.

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Hi Shelley ,

 

Gareth's was prescribed by his gastro doctor. I am sorry you thought we were treating it on our own.

 

Take care, Everyone.

Margaret

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Hi Sweet and Margaret,

 

I'm sorry, I really wasn't trying to diminish anyone's input on this subject, as it is worthwhile to know what remedies have worked for us and what products we find work the best.

 

So I'm not worried about any of us who are taking any meds (prescribed or over the counter) on the advice of our doctors nor about telling others what has worked for us.

 

I'm only worried about other people taking our wonderful input without the advice of their doctors. It is just so easy for all of us to acquire information from any source and think that it can replace the input of our own medical team -- and that is so very dangerous with scleroderma and with the hundreds of possible complications the illness can present.

 

So, I'm concerned that when we say we are taking x-y-z, we all know that does not mean we are "prescribing" it to anyone; but some of our newer members or casual readers, in particular, might be missing the main message of our forum which is to always check with reliable medical sources and to consult doctors for medical advice. And with scleroderma, in particular, to consult a scleroderma expert.

 

If you'll notice, in the example above, it was the doctor who told their scleroderma patient to take more fiber and laxatives! But scleroderma is unique in that sometimes we require *less fiber* in order to have proper bowel function and in those instances, increasing fiber can be dangerous and even deadly.

 

So, if a doctor has thoroughly evaluated a patient for the condition and then told their patient to just take over-the-counter laxatives, then our input on which ones worked best for us might be quite helpful. In this particular case, I'm worried that Alice hasn't consulted her doctor about the situation yet -- perhaps thinking it is something only to be self-treated, perhaps out of concern of how to raise delicate topics with her doctor (many of us feel that about various issues), or perhaps simply not realizing how serious gastrointestinal involvement can be with scleroderma.

 

As it happens, g.i. involvement is a major cause of death with systemic scleroderma, so what we all want is for everyone with scleroderma who has issues with heartburn, constipation, diarrhea, or any other stomach or digestion problem, to be consulting experts rather than self-treating or silently suffering.

 

It's also a good reminder for all of us (even me) to bear in mind that our own situations can change and we could all possibly run into situations where fiber and laxatives could be dangerous for us...even if we have already received instruction on self-treatment measures, we should always be alert to signs of our treatments really not working properly.

 

So none of us have done wrong, except perhaps in thinking that Alice's situation is simple constipation in a scleroderma patient who is not developing significant peristalsis problems, which we would have absolutely no way whatsoever of discerning; and, in all fairness, most of us would have had no reason, until now, to even be aware of that particular g.i. pitfall in scleroderma...and my goodness, even some (or many? or most?!) of our doctors don't know about scleroderma g.i. involvement!

 

So on that matter, we should all surely give ourselves a break, as we are all doing our very best...and learning a lot as we go along, too. ;)


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.

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Hi Alice,
This is my first message and I hope it goes alright.My wife has a terrible time with her digestive system .She had her first dose of iv cyclophosphamide yesterday and the doctor said to try a product called ALIGN which was not out front in the CVS store but is OTC .I had to ask for it.I hope this is helpful.

Good luck Dick

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Hello Dick,

Welcome to Sclero Forums! Your first message came through just fine. I'm sorry your wife is on cyclophosphamide and has a terrible time with her digestive system, too. Please give her some warm hugs from all of us!


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.

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Hi Shelley,

 

 

 

I didn't think you were trying to diminish anything. You always have wonderful input and advice!

 

 

 

Welcome Dick! I'm so glad you've joined us. I'm sure sorry to hear about your wife however. If you have any specific questions, please throw them out to us.

 

 

 

Again, Welcome


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Alice, ask your doctor about Amitiza. It's a drug for contstipation that needs a prescription but it really works.

 

Bunny

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