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Scleroderma & Raynaud's UK (SRUK)

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Hi All

uknlv profile image
15 Replies

Hi everyone,

I haven't blogged in ages, I lurk around a bit and put my two cents in here and there but just haven't had the energy to do much more than that. Been having issues with breathing and so forth, my lungs don't seem to like it when it gets warm and humid. My hands and feet love it though lol No pleasing everyone it seems! Its cooled down a lot so breathing better and not as exhausted all the time as I was, but now I have had to break out the thin gloves and furry socks. Sigh What we all put up with eh?

I wanted to post something I found out from a friend of mine who is a retired nurse that has helped a lot with my bowel issues. I tend to either be on the loo all the time, or can't go for days and miserable. The vertict is still out to which is worse! hehe She told me that you shouldn't drink anything really cold or really hot first thing in the morning, this causes your bowels to spasm which causes a lot of the problems. And that you should have a glass of luke warm water with a teaspoon of lemon juice in it instead, then allow it to work its way through a bit, so about half hour to an hour. Then you can have what you want. The lemon juice is supposed to help keep things regular. I been doing this for a bit now and it seems to be helping me a lot. Not sure if it is the lemon juice and water though or the not having a cuppa first thing! Just thought I would post it for others, as one of the bad side effects of this for me is the bowel issues. And hopefully it will help someone else.

Hope all is going as well as it can for everyone, and keep warm it looks like winter is soon upon us. And all us blue finger/toed boobies will need to bundle up! See we aren't extinct like they all thought hehe

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uknlv profile image
uknlv
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15 Replies
zenabb profile image
zenabb

I haven't got the breathing problems but I recognise all you said for me. The bowell problems are the bane of my life. I will try the lemon juice in warm water. Thanks.

uknlv profile image
uknlv in reply tozenabb

Hope it helps! 8)

Yorky profile image
Yorky

I will also try the lemon juice, as at the moment I seem to spend a large part of each morning on the loo (will often go at least 6 times, with leakage after) and it often starts up again in the evening. I am guilty of having cold fruit juice very first thing as I have to take iron tabs, which need to be taken with Vit C and not within an hour of dairy, so warm lemon would be a good substitute. Here's hoping.

uknlv profile image
uknlv in reply toYorky

I hope it helps Yorky, I know to well what you are going through. Sometimes it is so frustrating when you can't go anywhere or do anything as you are unable to get to far from the loo.

Bee346 profile image
Bee346

Am trying the lemon juice immediately ....anything to help with this horrid bowel problem has to be worth a try .....thanks for posting this...

chrissieH profile image
chrissieH

Don't know if my experience will help anyone. I was having terrible bowel problems and had got to the stage where I was scared to go out. Anyhow good old Royal Free prescribed 'Loperamide . I take three a day (but you can take up to eight) and they're totally harmless. Changed everything, can go out at not worry about having to find a loo quickly.

Good luck everyone

uknlv profile image
uknlv

Thanks Chrissie, I am on 13 different meds a day at the moment so am going to stick with the lemon juice and no hot things first thing for now. But if it stops working and I need something else I will see what my doctor says about that.

Pipsmum profile image
Pipsmum

Hi

You folks with the bowel problems, do you have scleroderma?

I've had lots of bowl problems over the years, including diveritculitis, intussusception and enterocele and rectocele, as well as bladder problems. I don't have scleroderma. I do have Raynauds, Sjogrens, asthma, bronchiectasis and arthritis.

Recently, I had ten days without bms, despite my usual movicol. Now I've had three days with several and huge amountof wind.

Interested in your stories.

Thanks

Kathy

Yorky profile image
Yorky in reply toPipsmum

Hello, Yes I have bowel problems (can go to the toilet 10xs a day)and Scleroderma, and Yes wind problems. In fact the wind is so bad at times that I have not enrolled for my usual Tai Chi class as I don't feel that I can subject my fellow classmates and teacher to the smell. I am going to take Loperamide as ChrissieH recommends and see if it helps.

Pipsmum profile image
Pipsmum

Yorky, thanks for your comment. The Loperamide won't do anything for my problem, as I mainly have troubl going, rather than going too much.

I know what you mean about worrying about doing Tai Chi classes. I have been having physio for my hip, and I'm so nervous that I'm going to let rip when I'm there:)

Kathy

uknlv profile image
uknlv

I have terrible wind problems as well, and the lemon juice, although has helped greatly with me going, it hasn't done anything for the wind. I am afraid to bend over anywhere lol Maybe someone knows of something that helps with that. I guess you wouldn't want to light a match if we all got together somewhere! hehe

uknlv profile image
uknlv

Let me know if this is working for any of you. It has helped me for the most part, but I have had a recent bought of constipation but I have had to take pain killers on a regular basis and that always binds me up. I have found a natural help for that from my mother-in-law. I have ate dried prunes but they don't help me much, she got me some canned ones and warmed them up and that did the trick. I had been bound up for three days and tried all my usual tricks to no avail. This helped load and didn't cause the side effects I get from laxatives. I am all for natural remedies when I can. Hope this helps some of you with your problems as well.

uknlv profile image
uknlv

Well just an update, this has been working for me very well so far.

birdieca profile image
birdieca

I have been diagnosed with small bowel intestinal overgrowth. (SIBO) They find this out by doing a hydrogen breath test when I complained about alternating bouts of constipation and loose stuff. Have been put on a round of antibiotics and this seems to control it somewhat. Also found out I am very low on vitamin d, so now on a regimen of 50000 units 2x a week until I get it up again. Strange...I live in southern CA, so am in the sun alot.

I have tried the lemon juice. Some dieticians recommend it to reduce bloating. I warm it up in the morning and the evening in the microwave and add in some stevia. Actually tastes pretty good.

alwaysfreezing profile image
alwaysfreezing

ive had severe ibs with reynauds i take buscapan tabs they help a bit

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