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Sandy B

Dysmotility

8 posts in this topic

Hi everyone,

 

New to this site, new to forums but not new to Systemic Sclerosis/CREST/Raynauds etc etc. was diagnosed with SSc about 15 years ago, I am now 52. My diagnosis was made through blood tests my general practitioner ran following a diagnosis of Raynauds and he broke the news to me in such a casual manner that until the beginning of last year I didn't realise I had something that would potentially impact on my life so much. I guess I have been spared 15 years of wondering, waiting and worry, but 14 months ago things started to kick of a bit. Looking back over my life the writing was always on the wall, I have had various autoimmune conditions, starting with Graves disease at the age of 22, each episode kicking off after childbirth, so it was only a matter of time.

 

At the moment I have just recently had endoscopy, querying dysmotility of the bowel. I was just wondering if anyone else has any experience of this and has any tips they could pass on, on how to cope with this and still retain a sense of humour and also whether others experienced a worsening of symptoms after childbirth.

 

Good news is, my daughter who recently had some bloods done to see if she has any autoimmunity, emailed me today to say all is normal, so hooray!

 

Thank you for reading and in anticipation

 

Sandy B

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Hello Sandra

 

Welcome to the forum! Motility issues in the gastro intestinal tract can be common in scleroderma, we have a page about dysmotility issues that you may find helpful. Although I have motility issues they aren't severe but I know there are people on the forum whose issues are, hopefully they'll join in with some advice for you.

 

If you are not under the care of a rheumatologist who is a scleroderma expert you may wish to consider getting a referral to one. The list of experts includes other specialties apart from rheumatologists.

 

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)

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hello Sandy

 

Welcome to friendly forum. Its comforting to learn we are not alone with this unusual disease.

 

Ive only had my sclero diagnosis for 18 months, but it has affected my insides. I was suffering dysmotility for a long time before I knew the name of it, and my gastroenterologist (who treats me for autoimmune hepatitis) thought I had IBS. I didn't think it was that, as Ive never had diarreah, and since I got the systemic sclero diagnosis, he now says it was dysmotility all the time.

 

I drink a glass of water with some powder mixed into it called Movecol. I mix a bit of fruit squash to hide the flavour, and its brilliant as smoothing things along. I take one or two sachets a day, if I remember (but I sure know when Ive forgotten it!)

 

Im very glad your daughter has the all clear. I worry about my own two daughters, as I have multiple autoimmune conditions, and many of my family have one, but nobody else has multiples like me, so I really hope my 2 are spared. How did you arrange for the tests? Did your daughter get it on the NHS?

 

Thanks and best wishes

Debs

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Hi Debs,

 

Because of the many autoimmune symptoms/illnesses I have had over the years, dating back to my early twenties and the fact that my daughter has also suffered from Graves disease and has mild Raynauds, she mentioned to her doctor recently that I have scleroderma, so he arranged for her to have some blood tests as she was feeling unwell at the time, I'm not sure what blood tests she had done, only that it showed that at this specific time she is not showing any of the markers associated with scleroderma or any other autoimmune diseases, which is a relief as she is hoping to start a family soon.

 

As to the dysmotility, it really is a pain!!! I have just been started on the Movicol sachets and as you say, you certainly need something to dilute the taste, a gin and tonic springs to mind. I have only been on the sachets a week, so it is still early days, but glad to hear they do the trick for you. Having lived with`IBS' for about ten years now and to be told it may be something else is quite frustrating, as over the years I have just about tried everything to ease the problems. But the journey hasn't been a complete wast of time, as I have discovered a few foods which are a real trigger for the worst of the symptoms, so I now avoid these. But it's nice to have somebody else's input on what can sometimes be a very embarrassing problem, many thanks and take care.

 

Sandy B

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Hi all,

 

Update on dysmotility problems. Well my consultant thought Movacol sachets would be a good option to start things moving..... and THEY DID, and I can't stop, what a nightmare. Was away at the time, when the earth decided to move and had a three and a half hour butt clenching journey home, :D.

 

 

Well it wasn't very funny at the time, quite uncomfortable, but luckily I can see the funny side now, having just survived the journey. I'm to have a Barium enema on the 27th May so will stock up on toilet rolls well in advance. Not really looking forward to it, but will be relieved to have a definite diagnosis of all the different bowel issues going on and maybe some form of treatment plan put in place, so will keep you informed.

 

On a positive note, I am now 8 stone and have been for the last four weeks. As I am 5ft 8" this is no great weight, but is the heaviest I have been in well over 18 months. At my lowest I dropped to 7 stone 8 pounds and I felt quite poorly at times, but worst of all was seeing myself when I stepped out of the bath, the emaciated image, but I am delighted things seems to be going in the right direction at long last. My Doctor prescribed energy drinks, plus all the milk, cheese and chocolate I could eat, sounds great, but I couldn't tolerate it and it made my bacterial overgrowth worse, but very slowly the weight seems to be creeping up, just thought I would share this little bit of good news with you.

 

Take care

 

Sandy B

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Hello Sandy

 

I'm glad the movicol is working albeit rather vigorously! The barium enema won't be the most pleasant experience but the results will hopefully be worth it, the reasoning being that once they know what's wrong they can treat it.

 

Keep posting and 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 Sandy, just wanted to say that the barium enema is really not too bad at all. The preparation is the worst part - the procedure itself was pretty Ok.

Lizzie

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Hi Sandy, It isn't half as bad as it sounds, the preparation as Lizzie says is the worst part but the actual test is fine. I had one done a few years ago & was very nervous but It was OK.

 

Buttons

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