Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

Diet


  • Please log in to reply
6 replies to this topic

#1 atkinsc

atkinsc

    Newbie

  • Members
  • Pip
  • 7 posts
  • Location:Fareham

Posted 28 June 2012 - 04:44 AM

Just joined, as having a stomach flare up.

I was diagnosed last July with limited diffuse scleroderma,I have oesophageal involvement, causing reflux, bloating/discomfort, (I often look 9months pregnant!) altered bowel habbits, nausea etc!,(and the Raynaud's, telangectasia). I am on lots of medication to help abdominal symptoms. Am however confused re diet, should I be on a high fibre OR low residue??

Any advice?

Thanks
Clare.

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 28 June 2012 - 05:51 AM

Hi Clare,

Welcome to these forums!

I'm sorry to hear that you've recently been diagnosed with Scleroderma and are suffering a flare up with your stomach. I've included a link on Gastrointestinal involvement to give you some more information which I hope you'll find helpful. We also have medical pages on Diet and Scleroderma and our Food Guide for Autoimmune Disease and Illnesses which again I hope you'll find useful and informative.

I am slightly confused by your diagnosis; Limited and Diffuse Scleroderma are two systemic types of the same disease; you have either one or the other but not usually both together! Limited normally relates to the amount of skin involvement and tends to progress slower than Diffuse; although sometimes considered to be the milder form of systemic Scleroderma, nevertheless it can still involve major organs, as I can testify myself, having Limited Scleroderma with lung involvement.

I've also included a list of Scleroderma specialists, as we recommend that, if possible, our members do consult one.

Now that you've found our forums and joined our community, I'm looking forward to reading your posts and hearing more from you.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 28 June 2012 - 02:54 PM

Hello Clare

Welcome to the forums and Jo's right, you have either limited or diffuse, you can't have both as far as I know, they are both systemic forms of the same disease. Have a look at our videos for systemic scleroderma, diffuse and limited.

Many people with scleroderma avoid fibre or have it in low doses, unlike the general population their digestive system find it too hard to digest and you may be in that category.

Jo has given the link for scleroderma specilaists and you might want to find one especially if your doctor did diagnose limited AND diffuse. Remember that I am a non medical layperson but from what I know (diagnosed 5 years with diffuse and localised) it makes no sense to have a diagnosis of both. As already said one moves quickly (diffuse), one slowly (limited), one typically involves skin above the elbows and knees (diffuse) and one typically involves skin below the elbow and knee (limited).

If you do appoint a scleroderma expert they are the best people to ask about your diet as what works for one won't for another and they will be monitoring you. Gastrointestinal issues should never to be taken lightly because they can become as life threatening as lung or heart involvement.

Take care and keep posting.
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)

#4 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 28 June 2012 - 04:01 PM

Hello Clare,
Welcome, I hope you find lots of information and help here. It sounds to me as though you have Limited Scleroderma, often called CREST. C for Calcinosis which you don't mention, R for Raynaud's, E for Eosophageal dismotility, S for Sclerodactyly (skin involvement of the hands) and T Telangiectasia. Limited can also involve the whole digestive tract and become Systemic (I think) and that would explain your bowel involvement.

I have Limited with bowel involvement and all the other things except for much involvement of my hands. For me the diet part has just been a case of trial and error, to find out what suits my system. I have quite severe bowel involvement and have recently had an implanted Sacral Nerve Stimulator to try to help. Most people seem to find the SNS a great help but I have to say that I am not having the same level of improvement others seem to.

I take Omeprazole for reflux and Domperidone for nausea as well as a stool bulking agent to control diarrhoea. I seem to have a very boring dietary regime, being the same every day, definitely not high fibre but a medium amount. No caffeine, no alcohol (because I have liver involvement too) no hot or spicy foods, plenty of water but no ice.

If you are not already consulting a Scleroderma Specialist it would be a good idea to get onto one from the list Jo has given you and that might help you sort things out better.

Best wishes,
JudyT

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 29 June 2012 - 09:27 AM

Hi Clare,

Welcome to Sclero Forums! I'm sorry you have scleroderma, but very glad that you have found us. Don't worry too much about the clarification between Limited and Diffuse; they are both Systemic Sclerosis, and in a fair number of cases doctors aren't real sure which category to place us in. Sometimes they may cover their bases by just saying "scleroderma" or "systemic sclerosis" or in your case they may have covered all the possible bases with "limited diffuse scleroderma". Once you get situated with a scleroderma expert, they can try to clarify that for you.

Either way, any type of scleroderma that is not localized (such as morphea, linear or en coup de sabre) IS systemic, which means that it can possibly affect any part of the body. Although it's considered preferable (and is more common) to have Limited Systemic Sclerosis, some of the experts say the distinction doesn't matter very much because at the end of 20 years, both varieties can look pretty much the same, except for the extent of skin involvement. Also, those with Limited (aka CREST Scleroderma in prior years) are even more prone to developing pulmonary hypertension, and that is no walk in the park, either.

The primary distinction between Limited and Diffuse is the amount of skin involvement. In Limited, skin involvement (if any) is limited to the hands, feet, and/or face; some doctors include in this category any skin involvement below the elbows or below the knees -- and some don't. Therefore it is possible for a person to have two different diagnoses, depending on which experts they consult and the diagnostic guidelines that they adhere to.

In Diffuse Scleroderma, the skin involvement (if any) might begin anywhere and it is not confined to just the hands, feet or face. With both Limited and Diffuse, the skin involvement is nearly always symmetrical, which means it occurs on both sides of the body, rather matchy-matchy. Of course, in the absence of skin involvement or before things have fully progressed, it may be very hard to tell the two varieties apart.

Because of all these factors, many people with systemic scleroderma are not entirely sure what variety they have, and many with Limited labor under the perception that their disease isn't as "serious" or that it isn't "systemic" and you see we all perceive the blurry line between the two varieties a bit differently, depending on what our experience has been and how our doctors have explained (or not explained!) things to us.

I guess this is a long way of saying, please don't feel bad over the confusion of terms, okay? We are very happy to debate the differences endlessly. ;)

And I'm very glad you've found us and we look forward to hearing from you lots more!

: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.

#6 atkinsc

atkinsc

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 7 posts
  • Location:Fareham

Posted 06 July 2012 - 03:11 AM

Hi all,
Ooops! My error, I have limited systemic scleroderma.
Thanks for all the feedback and comments.
It's so frustrating that no one case is the same, as I like to know "whats ahead", and struggle with the not knowing.

I am on a mixture of drugs to help the stomach problems, Domperidone, (which I found taking before meals helps a lot), omeprazole, cimetidine, laxido as needed and Gaviscon at night. It seems to control it most of the time apart from the odd flare up.

Has anyone any thoughts on bacterial overgrowth in the bowel/breath test??
Thanks Clare.

#7 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 06 July 2012 - 06:53 AM

Hi Clare

I've included a link for you from our medical pages on Intestinal Bacterial Overgrowth. Thankfully, I don't suffer with gut involvement, so can't advise you from my own experience, but I'm sure some of our other members will be able to give you some first hand advice and I've also found a couple of threads on Bacterial Overgrowth and Bloating and Breath Test which I hope you'll find interesting and informative.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)