My Last Rheumy Appointment

[Lupiknits]

I was grateful for the appointment because for the last three weeks my digestive system has been more troubling than usual.

Metronidazole, which I take for a week each month seems no longer to help for sibo: it was like a miracle when I first started it. I’m now to try rifaximin. I hope it helps, because I’ve had bad trapped wind ( the gurgles are audible to others) and it’s painful. In addition my appetite has vanished and the old regurgitation is back with a vengeance, so I’ve lost three kilos which I’d rather hang onto. Of course the runs are there, with all the fun of anal leakage. The next appointment is in three months to see if the sibo improves.

One thing I learned from my Rheumy is that diverticular disease makes sibo worse. I’m disappointed with myself. Some years ago I had a colonoscopy after which they told me I had a number of diverticular pouches only seen in someone with a lifetime of constipation. Being me, I felt judged although I have certainly not suffered from decades of constipation. The sense of guilt obviously came from growing up with a mother who had a Victorian attitude to bowels.

I’ve now googled scleroderma and diverticulitis, and yes, although I can only find older research studies, it happens. I wish I’d known that before, although it does make sense. To be fair to the Gastro whom I wrongly perceived as accusatory ( because I’d reported very little constipation then) I didn’t have a firm diagnosis of scleroderma.

Anyone else? Is it me, as usual, putting something aside without researching?

Oh, and is rifaximin easier to swallow that metronidazole ?

[OldTed60]

hi there. Sorry GI things are bad again. I think I can answer some queries at least although no diagnosis of diverticula disease yet (but no camera has been up my backside since 2016). Yes I have a friend with severe RA who was also mortified to learn she had diverticulitis and very defensive with the gastro. But a lot of her meds and family history and her Sjogrens disease got the blame when she saw her rheumatologist. So her existing always very healthy diet and lifestyle were tweaked a bit to include more fibre - which obviously we can’t all do with systemic sclerosis gut. I know quite a few non scleroderma people with it and they all seem models of health and otherwise fit and control quite well now after treatments and changing to high fibre diet.

So absolutely I understand the indignity and shame associated with older generations and bowel disorders, including chronic constipation - which often now manifests as diarrhoea for me as the blockage is further up and gravity brings the rest down around the offending mass.

I was diagnosed 2 years ago with slow transit colon after a colon transit study and a year ago with large rectocele. I was referred for biofeedback and pelvic floor dysfunction was presumed by colorectal nurses. I too felt very embarassed and upset. But when I finally saw the physio she could find no pelvic floor dysfunction and indeed, discharged me after one attempt at biofeedback saying I had great floor control for a woman my age and stage. I asked what it was causing the incontinence and meaning I have to use a colonic irrigation system - which increasingly doesn’t work - plus picolax and Linaclotide daily. She said she thought it connective tissue disease further up inside. She also said I’m clearly very hypermobile. Colorectal fellow said fibrotic and vascular changes of systemic sclerosis and some neuropathic changes inside. So I now feel indignant with the gastro who said IBS-c and pelvic floor dysfunction 3-4 years ago and discharged me. It’s all been very humiliating I must admit but now I feel rather validated as nothing lifestyle or dietary can be done. But my rheumatologist (speciality is lupus) is rather prudish I suspect so we don’t discuss apart from SIBO in the abstract!

Regarding SIBO - I’m on rotating 2 weekly courses of Rifaxamin and find it very tolerable. The pills are orange very large torpedoes but they are enteric coated and very smooth so I don’t usually struggle much with them. I get no issues side effect wise and they seem to help - although just been up most of night with gurgling but I’m blaming nibbling too many carbs and cheese yesterday and day before for this and bloating. Paying high price for having visitors just now!

I couldn’t finally tolerate metronidazole - it seemed to exacerbate my severe gastroparesis so I felt awful all the time when taking it. In the end a GP wrote to my gastro saying no more of this hellish drug please and gastro said okay then just stick to Rifaxamin 2 weeks on 2 weeks off. This is okay although the two weeks off are never fun as SIBO symptoms always return with a vengeance. Hope some of this helps at least x

[Lupiknits in reply to OldTed60]

Thank you! Everything you say has been so helpful. It’s interesting about the biofeedback for an apparently weak pelvic floor. I had that, but my pelvic floor is, for a post menopausal woman whose last baby was a whopper, in good nick. The specialist nurse decided enough is enough.

Very interesting about the metronidazole causing you gastroparesis. I’ve had two bad experiences of that - far worse than the typical one - while taking it. I’m looking forward to taking something that I can actually swallow. Tomorrow is Iloprost day, which seems a bit excessive to others, given the current temperatures, I need my fingers and toes though.

Thank you again, really helpful. x

[OldTed60 in reply to Lupiknits]

We seem twinned. My last 2 babies were whoppers and I too get Iloprost. I admit I was a little triumphant when the colorectal nurse phoned last time 6 months back and asked how the pelvic floor physio and biofeedback were going. She said same as all say - that she’d report back to the colorectal and gastro MDT and discuss possible surgical interventions. Did this happen?! Who knows but if it did I’ve heard nothing. She phones again a week tomorrow and part of me just wants to say I’ve had enough give me an ileostomy or remove the offending part of colon I can’t live like this. But then again I’ve just had a portacath put in, cause sepsis and get removed - all for Iloprost - and still paying for it. I can’t see that I’ll ever do well with feeds or tubes or surgical interventions while I’m so immunesuppressed. So for first consult and discussion with Prof Denton next month is this dilemma. I know stomas are not easy to live with but at least I might get out without having to live in terror of the inevitable accidents? X

[Lupiknits in reply to OldTed60]

Yes, near twins! As to the referral back to gastro, well, let’s say I got a telephone consultation two months after lockdown started, discussing possible surgical treatment. I said ermm, no, let’s leave it until life is more predictable. Absolutely nothing since, despite three requests from Rheumy. I’m not sure I’d go ahead with it given the immunosuppressed aspect, and Rheumy also said I’d have to weigh up the risks/ benefits.

Well over a year ago I had a glossy letter from the NHS apologising about waiting lists. I assume that was for the Gastro side because everything else carried on as usual, albeit in unusually quiet and empty hospitals. x

[Barnclown]

great discussion, thanks. Sorry it’s all even harsher now. Though your insights re diverticulitis are v interesting & helpful: this is in my immediate family

Good to know these details, even though am not actually diagnosed with scleroderma, the v early onset + severity of my mouth to exit GI tract progressive debilitation (Dx SIBO, CIPO & CIF + chronic inflammatory upper GI Dx) + severe Raynaud’s (now on scleroderma protocol long term high dose sildenafil + losartan cause can’t tolerate nifedipine or iloprost) are all v scleroderma-like

So, aside from being grateful you posted + v much relating to both your & oldted’s situations, just thought might interest you to know the antibiotics that most help me keep my SIBO damped down are long term daily coamoxiclav (or amoxicillin). I tolerate both really well (metronidazole made me feel SO SICK) but after a lifetime managing slow transit dysmotility, at 70 my version has progressed to the point where I’m adversely affected by all other slow transit pharma, & my antibiotics only help damp down the SIBO in conjunction with long term weekly sodium picosulphate bowel cleanses & daily glycerol suppositories in between. My gastroenterologist says Ileostomy is our next resort🤷🏼‍♀️💞💞💞💞

[Lupiknits in reply to Barnclown]

Thanks for this! I’ll take a note of your antibiotic protocol.

Thinking back, my mother had to have an emergency colostomy which I assume was due to an abscess. This was about 50yrs ago. No other history of problems in the family. Times have much changed: the bag was somewhat more primitive then. She was able to get it reversed later.

[Barnclown in reply to Lupiknits]

You’re v welcome…& yes : a lot has changed! Maybe she had a twisted bowel? Volvulus. This can result from heavy fecal loading causing twists in colon. M6 mothers colostomy was due to rectum tumour so couldn’t be reversed. But she managed ok from 2008 until her death @ 98 locked down in nursing* home during pandemic. I have a SIL a few years olde4 5g an me, who had to have an ileostomy put in the year Diana died due to Crohns destroying colon, & she manages ok. So stomas don’t scare me…but the infections immunology worries about due to my immunodeficiency disease + Immunosuppression + age do, a bit. Anyway, if you ever have to resort to any type of tube feeding or elemental nutrition etc or stomas of whatever sort, oldTed & I have a good U.K. support group…it’s helped me a lot over the years 💞💞💞💞

[Lupiknits in reply to Barnclown]

Thank you, and thank you OldTed too! Very supportive and helpful 💕

[Barnclown in reply to Lupiknits]

💞💞💞💞