I’ve posted before about my on going gut issues. I’m really struggling at the moment as despite rounds of different antibiotics including Rifaxamin, recently nothing seems to work. I have in recent last 4 years (I just had occasional problems and reflux before then) had some good gaps of a few weeks between the worst attacks of diarrhoea and being housebound. Now I’m constipated for about 3-5 days then diarrhoea. After my last round of Rifaxamin within 2 days I was really ill. To make matters worse the whole family had the Norovirus last week including me but I just 24 hours of diarrhoea and flu symptoms. I stopped Rifaxamin for one dose then carried on. I have now stopped again as felt flu ish last night and diarrhoea today. I have spoken to the RF nurse and she told me to stop if it comes back. I probably need to ask her again tomorrow but in the meantime, have any of you been given different treatment that has worked for this? I noticed some of you take Micophenolate. They may be reluctant in my case as I have bad osteoporosis. I’ve never gained my weight back to what it was 2-3 years ago.
many thanks
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Halfwayuphill
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Hi there. Firstly so sorry you’ve had an extra bad time of it with getting Norovirus on top of existing troubles - sounds rotten.
I have severe gut involvement and am on maximum dose of Mycophenolate - have been taking it for 2 and half years now. I also get Iloprost and now, IViG. The latter is a bit of an experiment for my Gastroparesis and I’m due my second lot as an inpatient again, in 2 weeks time.
I don’t understand why Mycophenolate would impact negatively on your osteoporosis? I’m only osteopenic (stage 2) and take D3 daily so I don’t know about the meds or their contraindications with other drugs. Guessing it’s this?
For me it’s really helped by keeping away involvement with lungs and kidneys. I don’t think it’s affected my gut much - although I’m hungrier when off it - so perhaps it affects my appetite? But in my case if I eat more the gastric pain is much worse and so is the constipation so it’s a trade off I guess. I am on a mostly liquid, very restrictive low fodmap diet most of the time and take lots of meds for my GI - which I don’t like too much at all. My dietician doesn’t approve of low fodmap for me as says I don’t have IBS - but just wants me on high calories regardless. I’m ignoring this as I have half an Ensure daily for vits, take B12 sublingual and my bloods are good. I’m not risking going back to GI pain central for the gastro’s convenience and my weight is currently stable, bloods fine apart from raised CRP and low in range albumin.
I see a new gastro next week first time since Gastroparesis and slow transit plus hiatus hernia and silent reflux were confirmed early last year. I’m definitely going to have a long list of questions to ask them! For me the worst thing is a lousy taste of decomposing foods I get all the time - especially if I eat solid or sugary foods. This makes me feel constantly nauseated.
Otherwise I mostly manage to keep mostly GI pain free and I self irrigate my colon using a system I was trained up in last year. I have prolapses and non functioning recto sigmoid - not sure what caused this damage but most likely my MCTD - maybe fibrotic changes from the scleroderma or small nerve fibres from Sjögren’s. Guess it doesn’t matter which but proctogram last month confirmed that my backside isn’t synced with messages from my brain.
I know, other than ileostomy, that there’s nothing more to be done for my bowel issues so am quite cheerfully resigned. But I hate staying in hospital for infusions and need codeine for the headaches while infusions are running - and that’s when life gets hardest for me. But at least with the irrigation system I have control over when I go - even though i’m producing mostly just liquid these days.
Hi there, Thank you so much for your comprehensive reply. It sounds like you help control your symptoms very well. I think I misunderstood what Mycophenolate is. I presumed it was a steroid hence worry over my bones. I also am lucky enough not to have lung or heart involvement but it’s checked yearly now. By the sounds of it it may not help my gut mobility anyway. It just stops things getting worse I presume hopefully. I do have a lot of pain when my digestion is limbering up and periods of awful nausea but not really lost my appetite except when really nauseous. When constipated, I can go through days pain free. It’s really strange. I wonder if my prolapse uterus/ bladder problems tortured colon, dirviticular disease and weight loss make it difficult for movement through my bowel. My last endoscopy also said signs of gastroparisis as food left in my stomach. I’ve had contrast CT scan showing little. Do wonder if I could have a standing one though as that seems when I have problems! I’m starting with my new physio tomorrow and hoping she may have some answers. I think I do need to see another gastroenterologist though. I thought Dr Murray at the RF might be the person. I might try and see him once privately to rush it through (hah!) . It could of course just be scleroderma muscle weakness and possible thickening which is what my rheumatologist thinks. Seems odd all other organs ok though. My diagnosis still UCTD with Lt Systemic Sclerosis gut issues. They don’t use it seems MCTD description and we all know about that argument amongst rheumatologists! I don’t mind as long as helped as I am. Good to hear your experiences and I hope things carry on stable or you get better in little ways.
Mycophenolate doesn’t contribute to bone loss, steroids do. It is usually prescribed for immune suppression.
I think you have small intestine bacterial overgrowth(sibo). You really need referring to a Scleroderma specialist gastroenterologist, at THE Royal Free or other specialist centre.
I take rotating antibiotics. Two weeks of each, Rifaximin, coamoxiclav and ciorofaxin.
There is a breath test for sibo but I didn’t have it, my constipation then diarrhoea was dreadful and also flatulance and particularly eggy burps that is was socially embarrassing.
There is help and I hope you get the help you need, it also sounds that you may have malabsorption.
Thank you Trunchalobesity. I think we have exchanged messages before but before I was given rotating antibiotics. I do see Prof Denton at the RF and he has prescribed rotating antibiotics. My recent problems are because I don’t seem to be getting any relief and my constipation is worse last few months so that I’m still getting diarrhoea every few days. It may also be I haven’t come to terms with only having a week between these courses of antibiotics. The norovirus has muddied the issue too. I think I may see the wrong gastroenterologist at the RF as mine left and when my gp referred me he didn’t do it through rheumatology. I think I should see Dr Murray but don’t want to upset anyone! He’s very nice my gastro but specialises in tumours. How often do you see your rheumatologist? The nurses are very helpful but so much has happened to me I’m struggling with yearly appointments. Nice to hear from you
Prof Denton and his team are world class, I saw Dr Murray at The Royal Free, tell him your symptoms. I rotate my antibiotics and have them two weeks on then on to the next, I don’t have weeks off.
Yes I’ve had great care from Prof Denton. I’ve been going for years and saw Carol Black first of all. I was just monitored really with mild problems. Prof Denton picks things up straight away and he suggested I had SIBO and funnily enough my osteoporosis some years ago. The antibiotics really worked for a while but I always relapsed and just last few courses doesn’t seem to be working as well and I’m disappointed I can’t gain weight and just recently loosing more. I actually have caught myself envious of normal slightly rotund women of my age! I think I will try and see Dr Murray. I did notice he signs off my Rifaximin prescriptions. These illnesses are hard also because how they restrict you and I’m sure like many on this site you have more problems than I do. I now have two daughters on maternity leave and three Grandchildren under 3 and would love to do more to help etc. They do understand though.I’m glad the RF really help you too. X
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