I have been a member of the PMRGCAUK group for a few years now. I recently posted the following message there and was advised that I might find people with similar issues here. I talk about my background in the post, but would like to say that my mother had SLE, so I aware of what treatments were (or not) available in the 60s and 70s. I also belong to a very autoimmune family, with an uncle and 2 cousins affected.
I know that what I have to say is a bit scary and may upset some, but I would like to hear from anyone who has similar issues.
I have just had a diagnosis of 'chronic intestinal pseudo obstruction'. It is important to stress that this is an extremely rare condition, but is probable related to autoimmune disease. In short, it means the muscles and/or nerves in part or parts of my colon no longer work. I also want to emphasise that I had a positive diagnosis of Rheumatoid Arthritis when I was 36 and had been experiencing symptoms for at least 10 years before that. I am now 64 (PMR for 4.5 years) so have had autoimmune issues for a very long time.
There are treatments to alleviate some of the symptoms and I am awaiting my first prescription. Also, although I have been experiencing symptoms for some 18 months, I am generally fit and well. I have had to change my diet and through experimentation have found a regime that works for me. Weight loss (much needed) continues, but I have managed to slow it down. It seems strange after years of dieting, to eat what I want, when I want without consequences. (That doesn't mean a constant diet of cakes, chocolate and icecream!)
Thank you for reading so far. If you are interested in knowing more about the condition, I have attached a link below. If you are experiencing any gut-related issues, I recommend a look at GUTS UK. I found the website very helpful.
gutscharity.org.uk/advice-a...
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Odosmum
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👋👋👋👋🤷🏼♀️ Me too... AID+CTD-related CIPO + Chronic Intestinal Failure & the usual upper GI conditions (oral lichen planus, chronic: oesophagitis ‘preBarretts’ gastritis, gastroparesis, duodenitis...) ...am several years & emergencies down the line from diagnoses...& am responding quite well to tertiary treatments.
Am very grateful to you for posting: all the CIPO+CIF+GP patients I know are on small specialist U.K. support group forums...& most of those folk are on the Ehlers Danlos Spectrum. Am 67 and my immune dysfunction & connective tissue disorder primaries are all very early onset - of course the hEDS is genetic, most likely....my family is very immune dysfunction & connective tissue disorder too.
Thank you, Barnclown, it is good to hear from you. Gosh, you have been through the mill with your insides! I am glad to hear that you're responding to treatment.
I am starting treatment soon - I can't remember the medicine, but apparently it's fairly new and works by increasing gut secretions. Watch this space!
Great you’re thinking positive! I just had a video appt with my gastro yesterday (he is @ the same big hosp as my immunology & rheumatology teams): we’re about to tweak my treatments too...because recently my version of this got worse: huge impactions high in colon - GP rushed me off to A&E @ our smaller local NHS hosp where i was admitted for 6 days of the surgical team puzzling over me. Am guessing you’ve been through similar ordeals
So, maybe we’ll be on the same meds for that. I do know others here who’ve worked their way up to these meds due to progressively worsening slow transit dysmotility...among these are folk I suspect may end up diagnosed with CIPO, but as you know diagnosis is tricky to achieve for a lot of reasons.
My Chronic Intestinal Failure is sorta more of a hassle cause it’s about the small intestine going kaput: being so stalled it can no longer digest food, is unable to tolerate food residue & struggles to transport stuff too...so for 4 years have been off all food but plain rice cakes & gastroenterology’s prescrip lab synthesised pre-digested amino acids...luckily I’m feeling much better on that, so not missing food that much - I feel sorrier for the young folk on my CIF forum, many of them have tubes, stomas of various types for GP, CIF & CIPO...after all, I still can take nutrients & meds by mouth, & i did enjoy food for many years while safely could, although was constantly getting worse, so having to exclude more & more from my diet
Apologies for rambling on...glad to meet you, but wish none of us have to live with any of this 💞💞💞💞
No, you're not rambling at all. It's so good to talk to someone else. I appreciate that I am 'lucky' because I have not had symptoms for long - just May 2020 when I first noticed problems with eating and then painful gut spasms (like labour contractions). I had a huge tummy but suddenly lost about 5 kg.
I went to the Dr in September and was sent for an ultrasound. Meanwhile I took antispasmodics which stopped me eating. Nothing abnormal on the ultrasound, so I had a CT scan and a referral to a Gastroenterologist. Saw him in June - really quickly. Was expecting at least 22 months, but suspect my dear young Rheumatologist pulled a few strings.
So had a long chat with the Dr and at the end he said that he suspected CIPO, but would need a load of tests to rule out anything sinister and confirm his suspicions. Motility Xray, another CT, buckets of blood and lots of poo tests later (yeah, right!), he phoned me last week.
I appreciate that you and others have had years of being messed around meanwhile having to deal with horrible symptoms. I'm hoping that early diagnosis and fairly early treatment will stabilise things for a few years. I am aware though, that things may be otherwise.
That’s a very tough time you’ve been through...hope you’re patting yourself on the back/giving yourself credit for helping your rheumy & gastro to figure your version of this out promptly! My feeling: when we manage to collaborate in the way you’ve described, things tend to get done that crucial bit more efficiently & effectively. But, yes: there is a magical element of luck, good fortune in there. Are your rheumy & gastro practicing at a University hospital? Cause my impression is that these so-called unusual GI conditions tend to be diagnosed by clinicians working in tertiary care at Univ hospitals. Neuro-gastroenterologists specialising in this stuff are few & far between in the UK 🤷🏼♀️🍀❤️
Yes, I live close to Edinburgh and have access to centres of excellence. I know I'm very lucky. Our GPs seem to refer on to the specialists quite early for all conditions - I don't know if that is just our surgery or whether other Scottish ones are the same.
I remember many years ago, being sent back to a specialist after a flare up (after several years of GP care only) being told that the Consultant had been meeting with GPs and telling them to refer all their Rheumatology patients - even if the symptoms were mild. He wanted to have everyone in the area seen, with a view to hitting flare-ups hard to try to force remission, rather that keeping the diseases stable. I was very impressed and yes, eventually they managed to do that.
The medication is called Linaclotide - will be starting it as soon as the pharmacy can obtain a supply.
🥰 Thanks...AM DELIGHTED: feels SO GOOD to have POSITIVE FEEDBACK re the health system...yep: linaclotide’s what I suspected. Did you try prucalopride first?
No, that's the first medication given. If you, or anyone else has experience of it, I have a question. Instructions with the supply say to take 30 mins before food, but I think the Dr said to take it at night. Any ideas?
Sorry, but are you asking about prucalopride - if so, my Resolor prucalopride patient info leaflet says it can be taken regardless of when you’re eating🤷🏼♀️
😯! 🤞 🤞🤞🤞🤞 What’d you decide re timing & eating? I checked my linaclotide patient info leaflet, so now better understand your previous question ....Re prucalopride: did it help you at all?
Just taken it. I can't eat in the morning anyway - lack of appetite is a big part of my issues. I wouldn't normally eat anything until 11 - usually much later, so it's no problem.
The Consultant offered linaclotide as the first treatment.
Basically GP is what causes my ‘early satiety’ loss of appetite...you probably know that Chronic Intestinal Pseudo Obstruction (CIPO) + GP usually go together, of course...and Small Intestine Bacterial Overgrowth gastritis (SIBO) too....
because my CIPO is flaring now, my GP is too, hence I’ve lost a lot of weight...but my chronic SIBO & gastritis aren’t flaring because Immunology has me on long-term daily antibiotics + Immunoglobulin G infusions which keep my chronic SIBO & gastritis damped downright now
I tend to think this is all very similar to basic plumbing principles.
Just now I posted on the HU IBS forum asking if anyone has needed to move on from prucalopride to linaclotide. It’ll be interesting to see who replies. Over the years there have been posts about both meds on this forum, but I’ve never seen anyone but me mention CIPO....and I’ve never been diagnosed with IBS.
‘Crohns-like enteropathy’ was how my gastro & rheumy described my small intestinal manifestations at first, because these respond positively to my lupus meds (long term daily hydroxy + pred + myco + sildenafil + amitrip)...after several years on Exclusive Elemental Diet (the one off prescrip lab synthesised predigested amino acids I mentioned) unable to digest & tolerate food of any kind, this is now considered chronic intestinal failure (CIF)
No testing done for gastroparesis. It was a condition I considered but having read the GUTS info, thought that the symptoms didn't really fit me. I think that having signs of nerve damage in my shins, fingers and toes and also having steroid induced diabetes led my Dr to look at CIPO first. My suspicion is that, should linaclotide not give a good result.
GP sounds quite scary. I am glad to hear that some of your issues respond to the lupus meds though. One of my biggest fears was that my meds would need to be changed, because I am fairly stable at the moment.
👍...again we have similarities: early this year when neurophysiology tests @ my Univ Hosp found large, medium & small fibre neuropathy, we right away realised this helps us better understand my childhood onset progressively debilitating mouth to exit GI tract slow transit dysmotility...equally, the neuropathies’ diagnosis also helped my rheumatologist diagnose my AID-Raynauds-related severe ischemia reperfusion injury in my shins, ankles & feet (my hands & wrists are also affected, but less severely), & this week when I told my gastro that my rheumy has me on longterm scleroderma protocol sildenafil treatment for this, he said it might also do something to help the neuropathy affecting my GI transit 🤞🍀🤷🏼♀️
Like most of our issues, GP is a spectrum...over the decades, mine has been very severe at times & needed years of heavy meds, but now I’m much better able to manage it, and, so far, am avoiding those meds + the various types of tubes & stomas my younger friends on forum need long term
Been imaging you know this Bang Up to Date study (published March 2020 in the much-respected Neurogastroenterology & Motility journal), but in case you don’t + in case anyone else reading this discussion is interested, here is the link. I’ve had 6yrs researching the official literature on this subject, & this study is my ALL TIME FAV...it explains just how much medics & patients are up against when it comes to investigation, diagnosis & treatment for this stuff
it’s titled:
An International Survey on Clinicians’ Perspectives on the Diagnosis & Management of Chronic Intestinal Pseudo Obstruction & Enteric Dysmotility:
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Hopeful that diet can help treat Lupus
Advice would be really appreciated in relation to getting my full GP medical records
Change of diagnosis 😲
Autoimmune diet - Amy Myers
