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alice1

Stomach problems

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Anyone have problems with their stomach, mal-absorption, vomiting and diarrhoea and what helps?

 

Thanks. 

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In a nutshell, yes, yes, yes and yes. :crying:

 

What helps?  That is the hard part.   I think almost everybody with Systemic Sclerosis will have some sort of Oesophageal, Stomach and Bowel involvement.   For me, what helps is to discuss the problem with my doctors.   In some cases surgery has been suggested and I have had several Bowel repairs but that doesn't really solve the problem.

 

Malabsorption:  diet is the only solution I have found.   If you google Gastroparesis you will find several stages of dietary help which you can try.   I am inclined to stick with eating only soft foods which can slip down easily.   Very little in the way of fruit and vegetables which are uncooked.  Tender meats and eggs and milk of course.   Icecream, milkshakes and yoghurt are favourites.

 

Vomiting and Diarrhoea:   I have taken a medication called Domperidone for years and it makes all the difference with the vomiting.   So much so that I am afraid to be without it.   Twice daily is my routine but I have been prescribed to take it up to 3 times daily if I feel the need.   It is supposed to help the Diarrhoea as well but I also take an oral stool thickener which slows things down and makes life much easier.   Of course first of all you need to check with your Gastro that you don't have Bacterial Overgrowth, which can be helped with Antibiotics.

 

Best wishes for an improvement for you.

Judyt

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Hi Alice,

 

I'm so sorry to hear about the unpleasant symptoms from which you're suffering.

 

Thankfully, I'm one of the very few fortunate souls who don't experience major gut problems from Scleroderma; I've always had a strong stomach and even medications that can affect the gut, mercifully don't provoke a reaction from my lead lined insides! ;)

 

Judy has been able to give you lots of helpful advice, which I hope you'll find useful and I've included a link to our medical page on Gastrointestinal Involvement to give you some more information.

 

I do hope that things will improve for you and that you'll soon feel better.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Alice,

 

What helps the most with the g.i. symptoms of scleroderma is to consult your scleroderma expert. Gastrointestinal problems can be very serious and the sooner they are properly addressed, the better.  When worse comes to absolute worst, sometimes tubal feeding is necessary to bypass the vomiting situation and to get enough nutrients to compensate for the malabsorption.  And although that sounds quite dire, I know people with scleroderma who have had tubal feeding at home, all night long, and still managed to work full time during the day!  Of course that is not the norm and working full time is not a requirement for tubal feeding...but it just goes to show you that it can help enormously, as it is energizing to finally get adequate nutrition again.

 

That's worst case, of course, and many other things might be helpful before that, especially addressing bacterial overgrowth, if you have that, which is very common in scleroderma. Anyway, hie thee to your scleroderma expert -- or get one, if you don't have one already -- and get your symptoms properly managed and assuaged, and don't shy away from more drastic measures if they are called for.

 

And do let us know how things are progressing for you, okay?  I'm sending some friendly healing wishes your way.

 

: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.

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Thanks for the replies. Judy, Jo and Shelley
Doing all of the above except for the feed tube yet, was looking for a
magic bullet...alice

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Hello Alice

 

I have a very dear friend who has a digestive tract that doesn't work and is fed via a port in her chest into her heart. Her system neither absorbs food or moves it along. For her the vomiting and nausea is the worst.

 

Have a read of our blog by CFM Babs who is fed into her stomach thus avoiding her esophagus. I think the benefits make it worthwhile for her and as extreme as this sort of thing may be it does bring benefits.

 

Speak to your gastroenterologist to see what can be done to help your symptoms and it might mean radical interventions but this can actually improve your quality of life in the long run.

 

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 All,

 

I seem to recall that the post I loaded on this thread was on Sunday middayish when I was just beginning to think that I was having a bad day :o .   By late evening I was definitely unwell, and soon after midnight, when my poor husband had managed only an hour's sleep, I had to wake him to take me to Emergency.   I have not long been back home, having opted out of all that last minute shopping and fussing about that happens this time of year.

 

What seems to have happened is that I had a severe bout of Gastritis which caused a bleed somewhere in my stomach, and oops I was vomiting blood again. Three days later, after a Gastroscopy which found nothing significant and a Ferritin Infusion to replace the lost Iron, I am back home with instructions to have more blood tests next week.   Following that will be a CT of the small intestine which I suspect will show up nothing at all.   Best of all was Intravenous Omeprazole which works like a dream.   Wish I could have that at home.

 

Interestingly, when I got to the ward I found that the lady in the next bed to me had been diagnosed with MCTD which seems to me to be more like Systemic Sclerosis.   She gets severe Raynaud's and is being fed intravenously overnight to supplement the little she can eat during the day.   I have never met another one of us in hospital at all and I was disappointed to learn that she has no internet at home and really didn't seem to know the basics about her disorder.   I tried to tell her what I could without being condescending but found it hard to know what to say.   There are no Scleroderma Experts in NZ and I have found we need to be very lucky to happen across somebody who knows enough to offer sensible advice.

 

As seems to be usual, I have come home feeling that nobody really knows, and that I have been given all sorts of contradictory advice.   Thank goodness for these forums and the opportunity I have had to try to educate myself about my disorder.   Thank goodness too for the opportunity to say what I think and to read what others think.

 

Alice, I have to confess that I haven't got a clue yet what the majic bullet could be.  

 

Best wishes

Judyt

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Goodness me, Judy, I am sorry to hear that you've been so unwell. It's certainly fortunate that in the UK there are Scleroderma specialists, who do know about the idiosyncrasies of this disease.

 

I do hope that your blood tests and CT scan will be okay and that you will soon feel much better and be able to enjoy the holiday season.

 

Best wishes to you,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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NO magic bullet under the holiday tree but it a beautiful day and I have doubled up on my Domperidone.. Judyt  hope you are feeling better.

Happy Holidays to all...alice

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Hi Judy....I sure hope you had a relaxing holiday today. Sorry to hear of the rocky start.

 

Alice....my son has had gastric problems from the onset, at age 18.  It's his major problem with this disease. He's currently having swallowing issues and is scheduled (end of Jan) for his yearly endoscopy/stretching treatment. He's got bleeding from the *other end*,  so that will have to be checked out, also.  :(

 

I hope all who celebrate had a wonderful holiday.

 

Take care, Everyone.

Margaret

Mom to Gareth, 26 years old, DS/ASD

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Thanks Jo, Margaret and Alice for your good wishes.

 

Yes I had a nice day yesterday, I just had to sit and observe and hug the Grandies but our daughter put on a lovely lunch and it was just great to be with the family.

 

Hope you all have a lovely few days too.

 

Best wishes

Judyt

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Hi Judy,

 

What a fright that must have all been!  I'm glad you are back home, at least for the time being, and got to enjoy the holiday with your family.

 

: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.

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