I've had raynaulds for yrs now last year I started going into week long vomiting spells that landed me in the hosp for a week

I've had raynaulds for yrs now last year I started going into week long vomiting spells that landed me in the hosp for a week

Now they say I have scleroderma I've lost 15 lbs last month,my hands have blown up and it seems my rectal sphincter is not working right...any advice from anyone please I'm living on milk of magnesium been all over specialist's etc.....no meds they are in Canada but anyone else find any relief from home remedies....i am lost and its so frustrating

36 Replies

  • I wonder why you have been vomiting so much. Was it vomiting proper or reflux (in your mouth). You do seem to have scleroderma like myself. Your symptoms are like mine including the rectal one and the swollen hands. For the reflux I have esomeprazol which helps, the hands I put up with and the fact that I have lost some sensation - difficult to pick things off the floor etc. The rectal one is distressing. I cope with it with pantie liners and lots of toilet paper. I no longer deprive myself of good food and eat more or less what I like.

  • I don't have diarrhea..its the extreme opposite....the hosp Dr. Said I've got gastroperisis....and for some reason the poo gets to a certain point and then just stops movind down..

    There giving me pantoprazole its supposed to cut the acid my stomach produces..is the esomeprozole better?my hands wow yup I'm losing sensation too ty for responding

  • Dr said cus I can't poop I puke:-(

  • I have so far only had a diagnosis beyond Raynauds secondary to RA, but I have had something strange going on with my bowel patterns for months and have trouble swallowing often, a tickly cough after food and have episodes of vomitting straight after meals. I take Lansoperazole for reflux and Laxido for constipation. However I don't feel constipated in the way that I've experienced in the past. It's more as if my rectal muscles are on permanent strike now and won't allow my bowels to work properly? Can't explain the difference but what you describe is very familiar. I think it's part of Dysautonomia - where your autonomic nervous system stops functioning as it should. Laxido really helps me.

  • Is laxido a script I'm going to call my Dr.tomarrow thank you..and it sounds just like my muscles I had an anal rectal manometry and it showed the muscle only works at 30% supposed to be at 60

  • Laxido is powder in sachets that you add to a glass of water - I guess it's a bulk laxative or stops dehydration or something. Maybe a different brand name in the US - where I'm guessing you are.

  • Straight acid ...comes up my throat till I vomit its terrible I've tried everything to sleep...nothing is working its so frustrating I've lost 14lbs this mont alone I went from 135lbs now I'm 119i need to gain but I cannot..

    I've lost sensation in my hands also

  • And I take pantoprazole which cuts the acid my stomach produces....not working

  • I take omeprazol for my reflux which helps a little but have had bowel issues for a number of years now, my sphincter muscle does work well due to nerve damage and eventually was fitted with a spinal nerve stimulator which helps me to get to a toilet in time. I used to be caught out a lot before so I don' feel as restricted now. It doesn' solve things completely but my life is no longer ruled by where I can find a toilet.

  • Hi I have GP. has the doctor given you any medication yet? There are different things to try to stimulate the gastrointestinal tract.

    Avoid high fibre (ask to see a GP nutritionist eg lots of cauliflower will be a major issue but broccoli is fine! I find crisp lettuce awful but baby leaf better)

    Eat very slow and sip water

    Don't drink large volumes - little and often

    Very small meals more frequently (that's the advice, I actually find I am happiest with 2 meals a day - intermittent fasting ie I skip breakfast and it gives my gut longer

    I personally find sugar and fruit makes me worse

    You need to eat soft food think like baby food - if it's meat, not a steak but mince

    Chew everything for ages and ages

    Eat sat upright at a table and stay upright afterwards (don't slouch on the sofa)

    Eat your last meal early in the evening (not right before bed)

    I have a piece of foam cut to make a wedge under the top half of my mattress (you have to be elevating from the hip not just the neck)

    Avoid high fat (takes ages to digest such as pork crackling - which I loooove but it hates me)

    GP just means your digestive tract from your stomach to your bum is slow - food can sit for hours and days in your stomach and you can burp when it starts rotting. It's a brutal challenge to try to change your whole eating habits (what and how) and the doctor might suggest liquid feed depending on how you manage. I have managed to function pretty normal with domperidone tablets with each meal and following all the above advice from my specialist, but it depends on how slow your tract is - some people have feeding tubes or tubes which bypass the stomach and go into the gut through the abdominal wall.

    Get lots of advice and knowledge and good luck :)

  • Only pantoprazole to stop my stomach acid which kills me your symptoms are exactly like mine...and you are right when I eat the wrong thing or something I shouldn't have I vomit hours after mostly wee hrs of the morning....ty for your advice it is well taken...God Bless

  • There are tablets such as domperidone (also known as motilium which is the make I think) that'll help you hugely xx

  • Have you ever had problems w your potassium levels ?

  • I haven't but I've had supplements etc and I keep food down :) if you get sorted with some medicine to assist with the gut transit that might improve with the potassium levels :)

  • Hi, so sorry to hear you are having such a horrid time. I have suffered with the bowel problems and reflux with scleroderma for the last thirty years. I have had numerous operations including having the sacral nerve stimulator inserted. Unfortunately for me it I didn't work as as the nerves were so damaged but I have heard of a lot of people which it has really changed their life. I am currently trying to cope with everything alternatively and try and eat very similarly to The Bear. Recently I have purchased Oxytech from Dulwich Health (so maybe worth having a look at their website) which has really made a huge difference to my bowel habits. I also drink Kefir each day which is a fermented drink which again puts lots of good bacteria into the gut which in turn helps the bowels. My niece has recent got me onto JuicePlus which has made a significant difference to my energy levels. I suffer, as do most people with autoimmune disease , with very little energy and I can honestly say these little berries, after taking them for two months, seem to have improved my energy levels enormously. Good luck with everything and hope you get all the help you need. Sending lots of love and healing thoughts x

  • Ty......

  • Oh I agree too! We have kefir, Kombucha and sauerkraut at our house. I also take oxyshred for metabolism for workouts but I've found it moves my gut along :)

  • Where do I get kefir...my sister is in England now can she buy it there and bring it to u s?

  • I bought the kefir grains on Amazon and make our own with the instructions - I am sure you'll find some in america try searching on Amazon? :)

  • We have the grain form I've been checking....my sister bought the kefir liquid in for me and were looking into the kombucha...my esophagus sphincter is shot I cannot lay down and sleep...tried raising the top of the bed,foam wedges any ideas in so sleep deprived...I really ty for your advice bear been eatin sauerkraut too .....but bedtime is a nightmare

  • I am not sure, eat a very small meal for dinner no later than 6pm? You need domperidone

  • Dinner as a light salad. Eat your more main food earlier in the day

  • Have water by the bed when you wake with acid have a sip to wash down get rid of the burn

  • How do you ingest the kraut? In meals or alone ??

  • I sometimes just have a fork of it :) it's fermented cabbage so it's a lot of fibre to digest

  • Hi Bear,I want to thank you for all of your good advice..put a foam under the mattress and actually got 2 nights of much needed sleep...and my sissy brought me some kefir in coconut milk and a few other ones and for the first time in 2 years I have been passing gas sounds funny but Hallelujah 😂 ty again

  • Wow that's all great news glad you're getting some success! 

  • thanks to you....i cannot express my gratitude enough

  • Ty so much I'm trying to get the kefir...not so easy wow.....my main problem lately is bedtime my esophagus is shot so the acid just kills me I've raised the bed tried foam now I'm sleeping on the recliner and it seems that isn't helping Idk what to do I'm so sleep deprived and I've lost 14 lbs this month alone..any ideas??

  • I have Systemic Sclerosis ana have similar symptoms to those you are describing. I take a stool bulking agent to help with in incontinence and for the vomiting I have been on Domperidone/ Motilium for years. It keeps things moving in the right direction and has made a huge difference,

  • I also have loss weight, had a bout with sphincter strain few years ago (was a bicyclist for pleasure), not anymore. Am on gastro medication for years, (protonics) and helps with the gastritis. My RA said now I have a fungus on my 2-left digits, and some type of circulatory problem , causing severe muscle spasms in my legs , feet, hands., sweating under both armpits, but no mass or blockage in chest area. Am scheduled on 3-23-16 for 3-day hospital stay to fight the fungus eating away at my fingers. Am on Fluconazale, and 10 mg of Percocet.. She took pictures of my fingers which I questioned as she :is the specialist. I am miserable. I need my fingers to function as a whole person, and to gain back weight. Drinking Ensure, trying to eat moreso. . I hope this reply eases your mind as this has occured to me as well. I am always crying and feel sooooo very alone in tis health battle that seems to cause other physical issues. I hope this eases your mind , that I can relate. Hang in there.

  • Emotionally I hear ya ...i feel exactly the same way....you made a big difference thank you...I pray your hospital stay at least gets you back feeling better 😊

  • Hello again: I am grateful that you responded. This is a lonely journey, filled with numerous hospital visits, questionable ailments and un-sure emotions as to whether or not (we) can strive to keep living. I have been feeling mentally unstable with lack of sleep, constant body changes, numerous x-rays, blood work which are coming back clean, yet my lean body shows lack of nutrition, so I keep wanting to do activities that I think will get me out my home, but these ulcered fingers keep me housebound. The fact that my hands are flowing blood, I am dealing with hot-cold water, weather changes, and weight loss. Hmm? I thought stress by life can be a factor, but your statement made me realize this is the problem.. Fearful of this hospital procedure? Yes I am. I hate this syndrome which has taken joy from me after years of caring for someone else. Thought I could live, be happy, enjoy myself. Not happening. I am over 55 years, and have Systemic Lupus, dealt with this, and was doing great until last year when my 2-digits started paining me. Discouraged that I may not have my digits--yes. Is fungus a part of these ulcers? Need to know.? Much gratitude to you. Get well.

  • So when this started with me th nurse called me and over the phone told me it was lupus...turned out raynaulds phenomenon...between my hands swelling up and they have partially amputated one of my fingers...my blood work also was clean....but Jan Feb and march ,April last year I was in the hospital back and forth for violent vomiting which killed my esophagus Mallory Weiss syndrome it bleeds.....alone ha I was waiting to die 💀 the only way I've been good til now is I nearly eat I live on milk of magnesium without that I would be in the hospital for sure 😊

  • I also have the problem of vomiting and swelling. For the vomiting I have noticed if I eat slow and smaller amounts I'm less likely to vomit. Being careful about what I eat too sugars and high fat or high acid foods I try to avoid. My GI doctor says I have conic gastritis and I take pantroprzole but I've noticed that I have to be careful with what I eat or I will vomit too. Good luck to you.

  • I take pantoprazole too...but it seems to be working less and less

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