Okie doke here goes, as I've got to take opiate pain meds for my SSc symptoms (i've tried lots of other things) I've also been taking laxatives as I get awfully blocked up.
I'm wondering if anyone has any other tips, apart from quitting the opiates on how to manage severe constipation? It's really quite depressing and I seem stuck in a vicious cycle of completely blocked to overly loose (sorry I know it's gross) when I get fed up and take extra laxatives...
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gindy
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Hi Gindy, I can suggest rhubarb, but it depends how constipated you are. I sometimes have diahorea, but thankfully not the constipation, unless I have been taking paracetamol or co-codamol. This condition just keeps throwing things at us, just to keep us on our toes!! When we think we have conquered one thing up pops another as if growing older is not enough, I am 60 and up to 5 years ago apart from having migraines I considered myself very fit, then my husband left me (after 35 yrs of marriage) which plunged me into depression, and 9 months later I was diagnosed with systemic sclerosis with raynauds. Good luck with finding an answer to your problem. Take care and stay warm.
Thanks fairy56 for that tip, I'm not a lover of rhubarb but tbh I'm willing to try any and all natural remedies as the dulcolax just feels so very toxic. Even worse, if you take a couple of tablets and you don't 'go' the next morning it's absolute hell as the tummy aches and burning sensations are rotten if no relief is forthcoming.
I'm so sorry you've had to go through the trauma of a long term marriage breakdown. It's not surprising to me that your Raynauds and SSc appeared whilst you were at a low point, it's a theme I think. I too developed it whilst going through a messy divorce (i'm actually gay, but did try to conform so married a man as was expected of me) and in fact it was almost a simultaneous reaction. The end of my marriage was awful, and I tried to leave for several months. During that time my ex husband became violent as well, so I really was at the lowest point I can ever remember in my life.
Thankfully I'm happily in a relationship with a woman that is amazing. She's so supportive of all of my symptoms. And in fact her mother suffers from Raynauds, so she's quite well versed in the whole thing 🙂
I can only hope your life has gotten better since the breakup, sending you some of my earned karma and healing vibes.
I was diagnosed with systemic sclerosis when I was 60, it happened out of the blue and there were no triggers or stress to start it off, I was very active.
Sadly, my husband passed away in May with an incurable rare stomach cancer, we were married for 40 years and he helped me as best he could before the chemotherapy got too bad.
He used Movicol for constipation and in the early days of my illness I used Lactulose, however I don't need any laxatives thank goodness, must be due to other drugs that I am taking.
My sister has MS and uses bran in her cereal every morning.
Fairy56 - Sorry to hear about your husband leaving, strange how we seem have the onset of the disease at the same age.
MEW53 Thanks Margaret, I'll have a look at what you've mentioned. The bran idea is a good one as irl hopefully be more tolerable than the chemical stuff.
Irene55 I already eat dried apricots and cranberries for breakfast, I'm sure I could add in the dried prunes and dates. Atm I'm dieting as due to inactivity from being ill I've managed to pile on the pounds. I'm wondering if that's making the problem worse . 😕
Lots of water and prunes or you can buy prune juice if that's easier, my husband swears by it. Lactulose is good it doesn't make you go as such but keeps everything nice and soft! I have the opposite problem!
When you do go it's easier if you can lift your knees, which tilts your hips it helps so if you have a small stool or box it helps you not to strain as much if you just pop your feet on that. Health visitor told me about that many years ago when my kids were little and it really works, somehow helps it to ease out. Sorry TMI
Winter64 haha funnily enough I use the 'poop stoop' and I saw it on an episode of 2 and a half men (Allan the hypochondriac used one) and I thought hmm, wonder if that really works. Hey presto it did work! But, unfortunately it does nothing for me unless I've taken some sort of laxative. I did try dulcoease which is a softener, but they did zip 🙃
I'm going out today to buy prune juice and dried prunes, and seeing as sprouts are in season it can't hurt to have extra greens. I do try to eat healthily, but I admit to being light on the fruit dept. I'll endeavor top change that though.
Thanks guys, as always you've offered lots of advice. I'll let u know how I get on 😉
Hi Gindy, I have had system sclerosis since my early forties and my diagnosis came after I had been attending the bowel hospital for awful problems with constipation and diarrhoea. I used to use medication but now I try and manage it with diet and supplements. I take Oxytech each night which I get from Dulwich Health and brew kefir each day for the probiotics. Also I take silicolgel sometime when things won't settle down. I have found it has been a lot of trial and error in the last thirty years and I still have times when things flair up but not as bad as in the beginning . I do hope you find something that helps and maybe seeing a nutritionalist or naturopath would be beneficial. I am so pleased that you have a wonderful partner who cares and supports you. Sending lots love and healing thoughts x
I've had a look at this oxytech Monika and would like to know if it's something u swear by? There's differing reviews online but if I'm to believe it, it's almost like a colonic irrigation via pill form? It's quite expensive, do u know if a GP will prescribe it in the UK? Mind u, it'd be worth it if it fits all it professes to.
Hi Gindy sorry to take so long to reply but had a bad flair up last week and was quite poorly. I have found the OxyTech has been really beneficial to me and also I have a couple of friends who use it regularly. I know it is quite expensive and it would be great if I could get it on the NHS but I don't think with all the cuts this would be possible. If you decide to use it please let me know if it helps. I think with our disease we just have to keep finding ways of helping ourselves - this site is so brilliant as we have so much support. I hope you find something that helps you . Lots of love and healing thoughts x
Monika oxytech? I've never heard of this, or the other things u mention... I see some googling in my near future lol!
I'm atm sat refusing to take my morning pain meds (oxycodone and pregabalin) until I can hopefully 'go'. It's so frustrating, it usually takes a full 24hrs of not taking any pain meds, which then throws the body into a mini opiate withdrawal and in that comes diarrhoea... It's a game of swings and roundabouts.
I've tried so many different pain meds but the oxycodone and pregabalin mix really works for me, whereas all the others just didn't cut the mustard. I'm definitely going to Holland and Barrets today along with my local Asian greengrocers who stock a myriad of dried fruits and juices.
Thanks for your input, and healing vibes 😃 (one of my beliefs is that we live our lives on vibes, and you can change your vibe if you try hard enough)
Well I've had a modicum of success thankfully. I waited to take my morning pain meds for a few hours after waking. I normally take them almost immediately as mornings are often the most painful times.
Anyway, that combined with the above discussed 'poop stoop' has given me relief I've been out and bought dried prunes and some prune juice. I'll be being very mindful of my diet going forward and it'll hopefully, all combined, give me a working remedy.
Thanks guys, you're always here to offer support and tips.
Hello everyone. I have not posted in a while but I have been reading a lot of the posts and I have had systematic scleroderma for about 12 years I am 57 I have a lot of G.I. issues I am not able to eat raw have vegetables or fruit I do have trouble moving my bowels and I also do the poop stoop which does help however I was wondering if anyone has the same problem with what vegetables and fruit and how do you maintain a somewhat healthy diet to help with your G.I. track also I do have a lot of upper body pain my arms my neck right into my head arms are very weak now
Hi Gindy I have suffered with really bad IBS since my teens leaning very much to the bad constipation side. I now try to avoid dulcolax as I find that even though it helps me when things get really bad it also seems to make things immediately worse after a bathroom trip. the best relief I've had over the last couple of years has been taking prucalopride (a gi motility med) bran every day and also peppermint and ginger teas. the teas really help with bloating and settling tummy too.
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I've been out and bought dried prunes and some prune juice. I'll be being very mindful of my diet going forward and it'll hopefully, all combined, give me a working remedy.
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Much help needed please. . . SSc DUs complicated by Raynaud's. . . Throbbing pain & no sleep in over a month
