I’ve had some new symptoms this last month and thought id ask you helpful people if you’d come across this. Firstly I’ve had UCTD with scleroderma gut problems for years but the gut problems have worsened since a diagnosis of SIBO from the Royal Free before the pandemic.In fact for a while they thought I had systemic sclerosis. I’m putting mctd in there too as I was positive for high RNP1 antibodies for some years although this has not been mentioned to me. I’m on rotating Rifaximin with Ciproflaxacin at the moment. I’ve tried recently to have bigger gaps between the courses as I’m worried about resistance and try and cope with recurring debilating diarrhoea pain weakness etc as long as I recover after a couple of days. Six weeks ago I had an attack with the usual worsening Raynaud’s, chills exhaustion and weirdly cold like symptoms when I also developed pain and tightness in my chest and extreme fatigue. In fact it coincided with the start of the cold spell here in the south east. It came and went worsening if I moved. I also had a drop in blood pressure when I got up from bed. A couple of occasions I was ok and went outside and the cold triggered it. I could hardly walk back. I contacted my gp who insisted I went to a&e. They did the usual bloods, ecg, chest X-ray and think a ct which were all clear. Needless to say the pain had gone but I had an attack as soon as I got out of the car into the cold at home! It gradually went over the next few days and I recovered and persevered in my goal of a month without antibiotics. Then I had awful diarrhoea after bout of constipation last Sunday and started Ciproflaxacin. I’ve also now had palpitations and awful spasms in my back and torso. Worsening pain in my hands and elsewhere too. The palpitations seemed to have gone but I’m profoundly weak with occasional spasms when I move around my spine. I have osteoporosis but although I also have kyphosis no compression fractures. Dizziness has worsened too.
I did see a young gp locum at my gp practice yesterday but although sympathetic seemed to imply it’s part of the usual pain you get with these conditions. He is doing some bloods though, b12 etc. I’m supposed to be trying metoclopramide but had an attack of weakness rather than like the heart problems the 4 times I’ve tried. Also im not sure if necessary for me as I know some of you your gut doesn’t work at all whereas at least with me I do go in dribs and drabs and sometimes too much in one go. I’ve got some gastroparisis on a endoscopy. Gut pain has been awful with wind etc and reflux worse. My main concern is is it a partial pseudo blockage or something else other than normal gut problems. The pain heart problems etc all worse when I go to the loo including affecting my bladder. I had urgency the first few days. I have chronic retention and recently diagnosed with grade 2 rectocele. The RF think all related to connective tissue disease. My next review is July.
Does this sound familiar to ant of you? I suppose at least it’s a bit better with the Ciproflaxacin but it is worrying me
thank you for reading
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I’m so sorry for what you’re going through now. It sounds horrible and certainly not all SIBO related. I do relate as have strange flares myself - in my case mouth and lip ulcers, shivers, extreme fatigue and random muscle pain - not particularly connected with worsening gut in my case but I have diarrhoea most of the time thanks to my motility drugs.
You don’t mention low or high BP or syncope but I’m wondering if you’ve considered autonomic dysfunction - which can take many forms not just POTS? In your case I would stop worrying about developing resistance to antibiotics as you’re already on two where I just get Rifaxamin- 2 weeks off, 2 weeks on as I haven’t tolerated others at all. I think you just have to take them prophylactic ally as and when required.
I also think you should ask for a gastric emptying scan/ GES rather than just a barium or gastroscope - which aren’t enough to diagnose Gastroparesis nor to measure the severity of yours. The GES is the gold standard test for Gastroparesis. Also you might want to request colorectal testing for slow transit which can sohetunes swing to dumping syndrome. The test for bowel dysmotility is colon transit study which involves swallowing about 3 -6 capsules over 3-5 days from memory and then going into X-ray your bowels at regular intervals over a week or even two weeks. The capsules contain various tiny shapes coated in photo sensitive stuff which show up on X-ray and tell them whereabouts the hold up is or if they all come out rapidly, then possible dumping syndrome I guess.
I too have a grade 2 rectocele but it got much larger prior to my stoma surgery - after a few years of having to use a balloon catheter system along with 5-10mls sodium picosulphate and linaclotide. I also had a proctogram a few years ago to confirm where problem damage had occurred. I can’t advise on SIBO treatments but my trusty motility drugs are domperidone (there are heart risks apparently but it’s been my wonder drug) and linaclotide - I take 1 a day of each.
I still seem to have SIBO with a lot of vibrating noise all around my colon most evenings and overnight. I don’t think Rifaxamin touches it much now but it’s just noise and hyperactive gut. My output (as we ostomates call poo!) is mostly high and liquid just as it was prior to surgery) so I often have to rise during the night when bag needs emptying but wouldn’t sleep because my insides are too active and uncomfortable. I read this described on scleroderma group as gut anxiety which sums it up v well. I only occasionally get intense gut pain now - which I blame on my Gastroparesis rather than SIBO and only occurs now when I’ve eaten something a bit too indigestible for me in the afternoon or evening.
Since stoma I haven’t had one episode of scary syncope apart from when I had Covid and once post heavy dental treatment . I think this is aura migraines and low sodium for me as confirmed in blood tests - but you could be low in any if your electrolytes or minerals due to your dysmotility. It’s all easier to manage ourselves when it’s been properly confirmed by the right tests and related treatments I’ve found. Ensure plus in decaf coffees or teas (I only get coffee and vanilla flavours now) have been helpful for me, as has my colostomy - although there are other IBD-like issues that come with this so it’s a compromise rather than a cure or ideal solution. But my sodium is back within range now I’m not laxative dependent and I can eat more variety of foods although still very restricted, mostly liquid/ soft diet.
I’m hoping that, if my rheumy’s out of area request for me to go to royal free for gastro second opinion get go ahead then I will get better monitoring and treatment advice - particularly for SIBO and likely pseudo obstruction. But for now I’ve put on a few kilos since surgery and credit stoma and Rituximab for this. Xx
I’m so glad I posted this OldTed and got your reply. As always your posts are so helpful. Yes I did have some sort of gastric emptying test but it must have been nearly 20 years ago and coincidently I have a telephone appointment with my gastro consultant at the Royal Free later today. He is not part of Dr Murray’s team (long story but basically my gp referred me rather than rheumatology. ) But I was planning to tell him I am a patient of Dr Murray now as well as my problems are more Scleroderma and perhaps he can relay some of my problems today. I expect he will discharge me then which is fine. My old test did show slow transit but I wasn’t that bad then.
I’m glad you mentioned POTS as I didn’t know there were many different types of syncope. I mentioned it as a possibility to the gp yesterday but he dismissed it as I didn’t pass out. He was pleased I had a gastro appointment and has asked for blood test anaemia etc. to be done at the surgery. Incidentally I’m low on salt, and low iron store which figures with the weight loss. Only a little though and it had stabilised. Professor Denton did say I have autonomic nervous system problems after I described these feelings of passing out etc. some years ago. To be honest I’ve had periods without them but recently they’ve reared their ugly heads but most days it’s when I go to the loo and even when passing urine or catheterising. The trouble is ‘going to the loo’ can take most of the morning! I do take deorylite after diarrhoea and yes I go through periods of having dumping syndrome.
I think you are right I need to take the antibiotics regularly and sort out some sort of motility drug. I wish they would give me domperidone as I’ve tried it I’m sure for spasms and quite honestly I think metoclopramide gives me autonomic symptoms. Also I need more tests and will mention them today.
Thank you so much for your help on this and so glad to hear the stoma has helped xxx
Quick re cap and also I realised OldTed I didn’t answer some of your questions re blood pressure. Yes mine drops. It always has been on low side but normally now it’s around 110/75 despite being on losartan and amlodipine. I’m a bit late to test when I have an attack as unexpected but if I remember rightly it dropped to 70’s or80’s over 56. I’ve never passed out though but it drops like a stone when coming around from ops. In fact they had to raise my legs above my head. I also have a real problem with restless legs which is worse in the winter. Another reason to avoid metoclopramide. I’m sure it aggravates my autonomic nervous system problems too.
On my old gastro consultants advice (he’s discharged me now to Dr Murray’s team) I’ve emailed his secretary so hopefully will get a reply. I’ve also rung the helpline at the RF and they’ve come back with a telephone appointment on Monday so that is good. I’ve also ordered a few Esure plus’s to try! Luckily I seem much better today so I think Cipro is working but dizzyness still bad. I think you’re right about the gastric emptying scan as I’d rather that than unnecessarily take something like Prucalopride.
The other thing is I’m getting older and how much of this is aging? I started having these attacks when I was in my late 60’s though which seems a bit early to me.
Do hope they pass your referral to Dr Murray’s team OldTed. Xxx
I don’t know about how much of this stuff is age related. Certainly I notice that it’s the older infusion patients who often have very low BP. I’m 62 and I do blame quite a lot on my age now but then I’ve always suffered vasovagal syncope since I was a kid and suspect quite a lot of this hypersensitivity and being prone to diarrhoea and faints is due to autonomic dysfunction. A lot is also medication related eg I was hospitalised as a kid after a broken toe led to prescribed codeine which in turn caused an impacted bowel. Mortifying when you’re 11 years old and the enemas and suppositories then caused me to faint! Metaclopromide gave me a stroke-like turn, as did Tramadol.
I don’t have POTS because my BP doesn’t change enough when I stand but again it’s a very common Sjogren’s and hEDS associated issue similar to allergies/ MCAS. But today I’m definitely having one of my flares which includes really severe fatigue, back and chest pain, migraine-type symptoms of nausea, diarrhoea, mild visual disturbances and headache. And I’m on last week of my Rifaxamin so can’t blame this on SIBO unless this drug makes no difference to me now. I only get these flares every few months but they are very particular and come with nasty chills and a low temp.
I think my worst scleroderma gut problem to date has been the fecal incontinence and, no details here, but I still need to wear sanitary pads daily despite the stoma. But the extra wash load has probably halved since surgery which is good at least! And I don’t need laxatives at all now. I assume faints are explained by my issue with low sodium and low thiamine - now apparently both in range. It really puts me off eating though and the bowel motility drugs, particularly linaclotide and prucalopride, don’t help!
I had an allergic reaction (felt truly awful and my lips swelled up!) to prucalopride which they made me try twice prior to the urgent stoma surgery. I think it was the low sodium and syncope that finally decided my colorectal surgeon to go ahead asap. I’m getting a first flexible sigmoidoscopy with her on April Fools Day but we suspect the pain and bleeds plus are just the slow transit damage and will only show diversion proctitis/ colitis - although mine is really bad if so!
I’m increasingly sure I should have had illeostomy rather than colostomy and then I wouldn’t need to take daily Linaclotide. But then again I see an older woman in hospital whenever I’m getting monthly Iloprost and she needs weekly magnesium infusions and looks on death’s door - so thin and miserable with mesenteric ischemia. She has had 3 stomas with hernias and now the wounds won’t heal up and she’s always in there, thoroughly fed up. So maybe it was better to just accept a halfway house for now because, let’s face it, I’m not going to get younger! X
oh I’m so sorry you have all this and having a bad day. I know exactly what you mean about those chills, chest and back pain etc. I used to get terrible migraines almost weekly but amlodipine seemed to help that. Also vision and my hearing used to change in attacks. I’ve taken a turn back too yesterday. I think I got cold sitting having coffee in the garden as the sun was out. Didn’t realise until I went in I was freezing. I really feel I’m coping much worse with the cold this winter.
I’m afraid I had to look up illeostomy but I see it’s attached to the small intestine rather than colon. It sort of makes sense for you as it’s less travelling through your intestines but I know you have a problem with healing. I suppose it may be better to consult Dr Murray when (& hope you will) get to talk to him.
I did have periods of fecal incontinance occasionally over the years. In fact it was one of my first symptoms kin my late 40’s. I usually get them now when I’m at home as I feel so awful I wouldn’t be out. I don’t go on trains without loos though and find it very difficult to arrange plans early due to having to ‘work on my digestion’. In fact I do tend to get these awful attacks of autonomic dysfunction after long journeys sitting in the car as if nothing can move. Tiredness and stress cause it too.
I’m sure I don’t have POTS from what you say and I’m very ignorant on these autonomic problems. Prof Denton first told me I had some sort after I told him in 2019 I had these attacks. He also said I was hypermobile, couldn’t control my body temperature and had Erythromelalgia. I have to say it’s amazing what he can identify and so reassuring. The difference in the last few weeks has been the palpitations and chest pain. The dizzyness is worse off the wall too. For ages my husband has been saying it’s like walking with an out of control crab when he’s with me. The blurred peripheral vision doesn’t help either but I’ve had that for some years.
I’m sure there is an element of aging in all this but it makes what we already have worse. This locum I saw last week wrote frail on my notes which bit of a shock.
Frail is probably apt but not nice to read at all. My colorectal surgeon wrote it in her letter last year as reason not to do illeostomy but try colonoscopy first. I was most upset to read this term because I don’t feel particularly frail although, like most of us with a CTD, I have my fragile days! Fragile seems a better word to me - like delicate crockery in need of wrapping and care! I do hope you get answers soon. My flares are usually when I’m fighting off a low level virus. This seems to be how my hyperactive immune system works these days xx
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SIBO symptoms?
Meh
Just found this and thought i would share ;)xx
