LUPUS UK
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GI problems with Sjögren's - how to cope?

Hi All. I know Barnclown has posted several excellent and informative posts about this so this will be brief. I seem to have reached a dead end with my liquid Senna now - after 3 days of hideous abdominal pain and terrible emissions! Combined with max amounts of Lactulose it has been giving me some kind of "normality" in this department but Senna is obviously no longer option. I have been blaming the increased dose of Mycophenolate for the worsening nausea and tummy pain but find it's eased a lot now I've dropped Senna from the menu.

I seem unable to progress my GI problems into a gastro referral. I haven't asked wonder GP but did ask her colleague about 3 months ago and she declined to refer me. Have no appointments lined up just now but am seeing my rheumy again on 22nd of next month. How useful do people here think a gastro would be in helping me with this? Found this link and it has helped focus me a little. ncbi.nlm.nih.gov/m/pubmed/2...

I can't face another one stop shop referral to someone who just shrugs me off. I'm worried about the Mycophenolate just now because, although my monitoring bloods have been fine to date - I'm experiencing a bad flare of widespread pain in muscles, tendons and nerves. I'm thinking it's not really doing much for me and the risk may not be worth the side effects. My face is covered in wee pimples and is sore and I feel I have some fluid retention everywhere and hyper pigmentation in these weird blocks of freckles and white patches that I've never had before . My old chicken pox scars are itchy and I seem to have new pitting on my forehead. None of this is particularly terrible of course but the discomfort in my skin and mild nausea is making me feel uncertain that it's a price worth paying?

On the good news front - my whole family conspired to surprise me with the return of my oldest son after 15 months on the other side of the world! He's recovering from jet lag to be a giant presence in our new wee house!!

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I really don't know twitchy ( but I don't have Sjogrens). I do know that since my Butrans was increased lactulose isn't doing the trick and I'm adding senna. At my very 1st rheumy appt I was prescribed meloxicam and warned that co-codamol etc could lead to bowel problems. Had to ignore that because meloxicam is death to my upper GI.

No harm in trying to ask rheumy or GP though. Faecal impaction ( unlikely but worst case scenario) is bad news.

Good news on your son suprise, though!

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Oh lordy, that sounds miserable ( the nausea and all I mean, not the reunion!) I imagine any GP would want to defer any decision about mycophenolate to the rheumy review next month, but you know best how much you can bear.

Do you have a specific goal for a gastro referral, or is it simply a case of wanting an expert opinion?

I guess the thing for now would be to book an appointment with your wonder GP to talk over the issues you have raised here, so she can see what you need and you can devise a plan that suits you both?

Sorry I've no specific advice, but sending good wishes x

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I don't really know what could be causing your problems Twitchy. I have Sjogrens, (diagnosed on symptoms), but don't take the medications you do. I was told that Sjogren's can cause constipation as 'the internal passages can become dry too. This makes it harder for things to move along'. At the moment though I haven't had any major issues with this.

With regards to nausea I do suffer from that. Not constantly but fairly often. I was prescribed Prochloperazine 3mg Buccal tablets to take when needed. These are tiny little tablets you place under your upper lip, on the gum line and leave to dissolve. They do work. As does ginger tea or nibbling a ginger biscuit. Gluten free stem ginger ones are brilliant!

It may be worth asking your rheumatologist about a referral to gastroenterology. With regards to my rheumatological problems I got nowhere with my old GP. It was my dermatologist who referred me to rheumatology. Being referred by another specialist I also didn't have to wait as long for my first appointment. Most likely because it was an 'in house' referral.

It must have been wonderful to see your son after so long. It must have been hard for your whole family to keep it secret too!

GE 🐴

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Thanks GE. If you read the link I've attached to my post you'll understand better how Sjögren's can affect the digestive tract. According to Dr Price (UK Sjögren's expert) primary is rather different and I think it's the autonomic issues rather than the dryness of the tract (or as well as) that causes many to suffer - very similarly to the way those with MS and Parkinson's do I believe - and also some with Lupus and RA too. It's part of my high inflammation as my blood results bear out.

Yes it's great having him home but he has a very overbearing larger than life side to his personality with Aspergers so it's very tense sometimes too!! X

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The trouble with senna is that the gut gets immune to its action - it really is something to use occasionally rather than long term:

medlineplus.gov/druginfo/na...

There must be a specialist nurse at N/W who deals with such problems - many people have to learn how to manage faecal impaction/incontinence and there are various ways of doing so.

Is this a permanent return of the lost sheep to the fold?

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Thanks for the info but I already know this Pro - it's just how to get it addressed.

And if the cause is dysmotility/ gastropatesis as my rheum suggested, rather than Sjögren's dryness or IBS-c - then are the treatment options different?

I just can't go on like I am just now. And I can't risk taking any codeine because pain is just pain but the risk of worsening fecal impaction terrifies me!

So I think GE's point is good - that my rheumy might be a better bet for expedited referral than GP. Basically I think this sits with secondary rather than primary care really because it is just a matter of time before i suffer from severe impaction. Many on Sjögren's forums rely on suppositories, enimas and even on colostomy bags. I'd really rather get this addressed by an expert now than when it's too late. The GPs are the ones prescribing me liquid Senna and Lactulose on repeat so they clearly don't grasp that this isn't really a long term solution (forgive the pun!) for someone like me.

Son is only partially prodigal as he plans to go off to India and then hopes to get work in Canada - but going back to NZ features in his talk too! X

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That is really what I meant - didn't put it well. But my point is backed up by your GPs happily handing out senna ad libitum. They shouldn't be. They should be picking up on the fact that this isn't an answer. Lactulose isn't really a problem because of the way it works - it's the senna and how IT works.

I think GE and CD have outlined really pertinent points too.

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I agree Pro - the handing out is the issue here. My neuro and rheumy both noticed this too and raised their eyebrows. It's not something I'm good at discussing either. My late mum used to talk about her bowels endlessly and I think this has pushed me in the opposite direction! X

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People who are preoccupied with and talk about their bowel function usually don't need to! Germans can wax lyrical endlessly - as typified by the old design of their toilets ;-)

If only I were there - I'd hold your hand and offer prompts... :-)

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Thanks Pro. As it happens my mum was the exception to the rule as she had very severe bowel issues - but generally I agree!

Wish you could hold my hand too because I think we'd be a pretty effective team!

But the first time I broached it with a locum gp she told me I was lying about a nurse referral for abdominal pain and binned the hard won stool sample I'd been told to bring by nurse, telling me constipation is no big deal and dismissing my rising CRP as insignificant. I was so mortified by this that I didn't raise the topic with a new GP for a further 6 months - and then I more or less had to drink a dram to pluck up courage!

Ended up having colonoscopy at N/W last year - which was also a hellish experience for me - although everyone else in my group looked perky afterwards so I think it was just me!! X

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Hmm - I'd have reported that locum GP. Especially one who doesn't get that constipation CAN be a big deal. She'd obviously never had to remove impacted faeces...

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I did - especially as I was given a copy page of my notes the following week by the senior partner (my GP for six months) with her horrible comment about me saying I had health related anxiety and needed CBT for lying about the nurse referral. The nurse referral was directly below her comment in b&w?! I received an apology from practice manager saying that my letter of formal complaint would form part of her ongoing professional review. I don't think she was a locum but rather a seconded part timer. And my letter was utterly ruthless I'm afraid.

But the next GP in next practice got the opposite letter thanking her and updating re the Sjögren's so I'm not a really a naturally mean patient!! I don't put up with anyone patronising me now.

Fortunately I haven't had to complain about any of my doctors for a while now and I do leave room for human error and apologies of course - but they all know I won't hesitate to go for the jugular if needs be.

And by ALL I mean GPs, rheumy, neuro and rheumy - registrar who got the sharp end of my pen most recently with copies to the others! X

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I don't have primary Sjogren's, although it has been suggested it may be secondary to RA and I'm awaiting blood test results. It is not known if my gut issues are autoimmune related, Ehlers-Danlos related or a combination of both but I have, unfortunately, acquired a fair bit of knowledge over the last 4 years.

Your link was about diagnosing gastroparesis which is different to intestinal dysmotility. It isn't a given that if one part of the GI tract is affected, then all parts are affected and many people do have "only" (I don't use this word lightly) one part affected. Also, you're talking about constipation and not the classic upper gut symptoms of gastroparesis. I could be wrong and maybe you've just not mentioned it. The other issue is that study in your link didn't use the actual test which is the gold standard for diagnosing gastroparesis. I question its methodology and results, although I've no doubt there is a link between autoimmune diseases and gut issues.

Also, just to provide reassurance, please don't panic; severe impaction and more seriously, bowel failure is not a given. It's actually very uncommon. There are many other methods of constipation medications that can be tried, as well as other oral medications. Lactulose is really only sugar and water and you can up the dose quite significantly without issue. Suppositories are a good next step, followed by enemas if things are severe, although they don't always allow people to do home enemas. These are all things that are probably a good discussion with your GP in some depth. Hope this helps. :)

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Thanks Crashdoll. I think it's just my lower GI that is affected - and I do use the word "just" advisedly here because I know how badly some such as yourself are affected by gastroparesis and I'm not in that league.

I've had pancreatitis and colecystitis and occasional vomiting food when really extra tired and my upper digestive system won't cooperate - plus not being able to swallow when my oesophogus spasms sometimes but it doesn't affect me frequently enough to be a problem. But the constipation is what really bothers me day on day out and it's good to know that Lactulose isn't going to be harmful long term if I'm whacking through it as I am.

The excruciating tummy and flank pain and flatulence caused by Senna, laxatives and high fibre foods is a bigger problem now though. In fact they just don't work anymore but cause horrible pain.

When you say conversation to be had with GP do you mean regarding alternative treatments to my existing ones or referral to specialist for dietary advice I wonder?

One of my problems in this regard is I often go but don't have much sensation of having been if this makes sense? So the constipation itself doesn't cause pain - I just get bigger and bigger/ more distended and finally have to use suppositories when I look 6 months pregnant - but even they don't work! So when I'm busy I tend to just stick to Lactulose and think it's working only to realise that it's only ever eliminating a relatively small amount. My hubby worked with older people for many years so, although I'm not in this category, I'm aware of the risks of fecal impaction and this prospect troubles me a lot!

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I think it can't hurt to have a dietitian referral, or at least, ask for one. The worst they can do is say no and if you don't ask, you don't get. ;)

I reckon that an initial discussion over what steps can be taken next with your GP is the best next place to go. I don't know the referral criteria for gastro in your area or the waiting times. However, in the mean time, there are other things your GP can and should be offering you. Movicol at high doses is generally where they start. Often the initial dose recommended for movicol is totally useless, although I've heard some people saying it does work. Sometimes it's not the actual laxative that helps but the combination of ones and perhaps you haven't found the right ones for you. It does sound like there is some experimenting that your GP could do to bring you some relief.

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Thanks Crashdoll. I've tried Movicol when in hospital once - can't recall it making any difference but I'll definitely ask. GP said she'd see me after my rheum apt in 5 weeks so I guess that will be the time to discuss it. Meanwhile I've increased Lactulose to 3 cups a day 🤞🏽🤞🏽🤞🏽

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How much is 3 caps? 60ml? My gastro prof (who is one of the few experts in this area) said that lactulose works well in combination with bisocodyl (think the brand name is dulcolax) suppositories. He suggested 120ml lactulose plus twice daily suppositories for a week and then review. Lactulose doesn't work instantly, it does take a few days. The suppositories, on the other hand, should work within 30 minutes. It didn't work for me at all but just passing on.

I do wonder why you weren't given movicol (laxido) at a higher dose though. It's used in big doses for disimpacting bowels and it's known for being quite good.

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Yes 60ml. Also - sorry to be a bit clueless Crashdoll but I have been using suppositories prescribed for me a few years ago by the hospital pharmacy (also prescribed Movocol) so have now run out.

Do I need to ask GP for more or can I just buy them OTC? I've been on Lactulose 60ml daily for two years now but if I'm honest it's not really worked which is why Senna was added in. I have asked a GP from new practice if this combo is really right for me as still so sluggish. She just replied that she believed it was the most effective combination for most of her patients with IBS-c. I think I'm really needing to enlist my rheum's support though because my GPs know nothing about Sjögren's - they can't even bring themselves to say it!!

I think the increase in Mycophenolate might possibly be contributing but did have this too problem for about a year prior to starting the MMF.

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Yep, you can buy OTC. These are them; dulcolax.com/dulcolax-laxat...

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🙏👍🏻🤞🏽

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I just noticed it says take one a day, so maybe start with that.

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I've just realised that I'm going to have to summonup the courage to go into a pharmacy and buy them! I will be sparing don't worry!

To lighten the tone - a nurse auxiliary inserted one during my pancreatitis episode and I waited and waited thinking something wasn't right. Went to the toilet and it dropped out - but not from my bum! Seems she hadn't quite grasped female anatomy?! X

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I always send someone else to get medications that may be embarrassing. Life's too short for ME to feel cringey. 😉

Oh blimey, that's a bit worrying really! Then again, I recently had a debate with someone who genuinely believed they peed from the same place where babies come from. She wasn't a stupid person either. 🙈

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😄😱😉

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Sending my husband to pick up a bag of repeats is one thing - but sending him to ask for suppositories over the counter...????😜

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Hi Twitchy. I don't know anything about the gut issues that you mention but I know that expectation is for GP's to implement referrals. Having said that, my rheumy did the referral to ENT for me - to the raising of my GP's eyebrows.

A vegan friend told me yesterday of the very laxative properties of Jackfruit - she had over indulged 🙀but in moderation, it might help in the short term perhaps? Xx

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Thanks Clare but "laxative properties" are a complete no no for me now and short term solutions aren't the issue. Yes I'm thinking I could ask the rheumy to ask the GP to refer as I'm aware they don't usually refer directly. That said the rheumy registrar referred me to the oral consultant at the dental hospital directly - but maybe that was different as it was for Sjögren's testing and my dentist had already referred me for burning mouth Syndrome. X

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Oops. Sorry, I must have misunderstood. I don't understand the referral system that we have in place - other than it all comes down to budgets eventually. Xx

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No I'm same with NHS referral system Clare - but I'm hoping I might get a referral through the rheum possibly. I have had this dysmotility problem for a few years. It came on suddenly after a nasty bout of Giardiasis - but looking back I've had it on and off since I was a kid - mainly when on meds containing codeine. I was hospitalised with it (fecal impaction) when I was 11 after taking codeine for a broken toe. Not something I have been able to forget that easily!

I wasn't troubled by it after dropping gluten and going on MTX for RA. But since the Guardia it's just got worse and worse along with other Sjögren's issues. My rheum explained that it is part of my neuro autoimmune stuff i.e autonomic not IBS or dryness. X

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Sorry to hear of your problems but please do ask to see a Gastro consultant sending you very Best wishes

Enjoy your time with your son 😊

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My understanding is that GPs should be steering away from the rather potent lactulose and senna for the much gentler laxido. It really is less harsh on the bowel.

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Oh dear HT - I was on Laxido for a year but it just irritated my bowels all the time. I never knew what was about to happen but still consistency of concrete! That's what took me to the current mix 🙄 x

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Ah, what suits one, doesnt suit another. In that case apart from offer my empathy I have nothing else. POTS used to and sometime still does give me the most horrendous dysmobility. Its awful. I hope you get sine resolution. Perhaps a referral would be beneficial.

I have even thought about getting my gut flora tested in the past but I have never got round to it.

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Yes I've thought of doing that too! I occasionally have a few days of being back on a roughly even keel but then it starts all over again. Then of course I try and work out exactly what was different in my diet when things were better but my diet remains roughly AIP all the time now.

Meanwhile the excitement of having eldest son staying is rapidly wearing off and husband and I are holed up in our small bedroom while Game of Thrones roars along next door on the tv screen. I did ask him and youngest if they could possibly turn it down but his Aspergers tendencies and now some deafness don't make those kind of communications easy at all. It's what they call a very mixed blessing having him back!! X

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Bowel problems are really awful Twitchy and literally make us feel rotten to the core. As Crashdoll (I think) said earlier, please step away from the Senna . . . it really isn't anything anyone should be using except for occasionally. It may be natural but it's what is known as a stimulant laxative and can seriously irritate the bowel lining which would be a particular problem for those of us not producing the usual secretions which help to protect our mucosal membranes and tissue. Movicol seems to be often recommended to other people with Sjogrens although I've not taken it myself (I've kept to lactulose) - might be worth trying again as it is also used for foecal impaction and helps to hold the water in the bowel (which sounds beneficial where dryness is an issue).

I would think there may well be several issues at play where your bowel troubles are concerned - it is likely there is some issue with the delayed gastric emptying as this is apparently an issue for MOST people with Sjogrens - (Autonomic nervous system dysfunction is seen in a proportion of patients with Sjögren’s Syndrome and can be a factor in bowel disease e.g. gastric emptying is slowed in approximately 70% of symptomatic patients with Sjogren’s ̈Syndrome (Kovacs et ai, 2003)) - BSSA pdf file on gastrointestinal complications of SS. Then there is the obvious dryness issues on top of this and then any complications of your current meds regime. Altogether quite a complex picture! The current front page of the BSSA magazine also discusses Sjogrens and the gut: apparently there are newer laxatives out there which I know nothing about - (resoclor, constella, amitiza) - never heard of these but they are mentioned as being worth discussing if the traditional types don't work for us.

Do you also think the mycophenolate could be part of the problem too - do the bowel issues predate you starting this med or have they increased since you've been on it? I know it's a horrible topic of conversation but I think you will need to have a chat about it with your GP if you possibly can as this is really affecting your day to day quality of life.

Hope you can get it resolved soon xxx

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Oh yes I know you're right SB - I'm going to have to be brave I suppose re GP. I've had 3 full medicine caps of Lactulose today and zilch. It makes me so miserable and 😡!

I put your link to the BBC r5Live group feature on Sjögren's on an international Sjögren's FB forum I occasionally use. I thought it might help calm the angry man in his frothing about Venus. But I then got some angry woman from Princeton USA telling me that the young judo player clearly doesn't just have Sjögren's but categorically has another problem such as Coeliacs or Pernicious Anaemia. Sjögren's doesn't cause digestive problems at all apparently? She can guarantee this?!

This is where the link above came in suddenly from another angry Sjögren's FB man!!? Heck social networking for our health is so scary sometimes - I think I'll just stay here with lovely people and have no more forays into Sjögren's FB pages!! X

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Lactulose can take a few days to work - so don't increase the dose because you think it isn't doing anything. You might regret it!!!!

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Unless it's abdominal pain we are talking about it would take industrial quantities to regret Pro😉😱😜 I usually take a full cap twice daily with small amount of Senna syrup (couldn't swallow the pills). So I doubt, from what CD said above, that a third capful will have much effect. But hey here's hoping!! X

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No, what I meant is that it all adds up - and people increase the amount thinking nothing is happening. Which then can lead to explosive results. Which until you experience it you may think is what you want...

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I agree that some of these groups can be positively upsetting at times - I can't help but take it personally even when I know I shouldn't. I've had personal attacks in the past . . . and all we're doing is trying to help and support others going through the same health issues. Some people are so judgemental about others and limited by their own experiences. (My own disease was very different when I was younger - it was basically lupus but has 'evolved' to become Sjogrens as I got into my late 30s so I can understand that many younger people present very differently.) Oh well - I do need a few carefully chosen groups such as this as I find it validates my day to day experiences with this strange condition that noone has heard of.

I'm going to the BSSA meeting in Birmingham for the first time in October so that will be quite strange seeing a relatively large number of other people with Sjogrens in one place!

Anyway, Twitchy - be brave . . . deep breath . . . and tell all ;)

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Will do thanks so much SB - and you never know October and Birmingham - a possibility for me too perhaps? X

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It does seem to be a common problem. especially with FB where there are a lot of people who claim to have definitive knowledge and anything that doesn't fit their pattern is wrong. Unlike here where everyone knows we are all different.

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Yes here is where I stay - but 🤞🏽The BSSA do decide to start their own HU so I can stop feeling like I'm piggy backing here when I ask Sjögren's related questions, Although it's really just a huge spectrum and Lupus can sit pretty close up to my version of Sjögren's it seems - as this post about uncomfortable bowel related rubbish shows😏😜

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I have Sjogren's and Discoid Lupus - I take Hydroxychloroquine and Aciclovir (for recurring Shingles). Although Hydroxychloroquine really helped I was plagued with stomach problems and an awful cough - eventually I went to see a Medicinal Herbalist (Registered) and have never looked back! He was recommended by a Doctor so that I would not have to take drugs to counteract drugs. Included in my herbs is Turmeric - it stopped me having to have an inhaler for my coughing and solved my stomach problems. They always check the drugs you are on against what they think will help.

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Thanks - I would love to find someone like this to help me Cas70 but I don't know how to - I'm new to this area and don't have much word of mouth. My Pilates teacher has just been recommending things to us but I have no idea if they would be appropriate for me or not. I can't bring myself to explain to her I'm on a powerful immunesuppressant!

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This might be totally random and out of date - do you know Morgan Tower Pharmacy in Dundee? It's between South Tay St and the Uni, almost opposite the Queen's Hotel. It used to have a comprehensive homeopathy service and other complementary stuff. They may know of such practitioners. They can only say no...

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Thanks Pro - I'll look into it. I'm thinking it's time I saw someone with expertise in Sjögren's to see whether I'm on the right treatment and what aspect is causing the GI problems. This would involve spending quite a lot of money on getting to Swindon hospital and see Dr Price privately so my feeling is that I may do this as next option and can't afford to do both. Maybe if all else fails it will be time to try functional or complimentary medicine. I did recall earlier that my uncle has an alternative/ naturopathic place near Edinburgh which he and my cousins all swear by so I'll ask him too. X

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Hi Twitchy - I went to see my Med. Herbalist and he gave me The National Institute of Medical Herbalists email and telephone number. They could give you the name of a local Herbalist. nimh.org.uk info@nimh.org.uk. Tel: 01392 426022. - I can only tell you that I had the opposite problem to you - plus the most awful Sjogren's cough - so the two combined left me scared to go out! Within 48 hours of herbal medicine my stomach returned to normal. A couple of days after that my cough had stopped. I haven't had reflux or diarrhoea since and have thrown away the Inhaler the NHS gave me. Good luck Cas x

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Thanks for this Cas70. I'll copy and paste the number but just for now (end of a long 24 hours of the other extreme) I'm resolved just to take each day at a time. So glad you've had such a great experience with herbal meds though 😊

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I didn't see this post earlier but wish I had because I've been utterly miserable this week with very similar problems.

I am always constipated and tend to only "go" every 7 to 14 days. I thought that I'd try taking moviol which my teenage daughter was prescribed for her gastro issues by hospital, she was told to take 1 sachet a day. I tried it and found it gave me terrible wind and boating and general upset. It sounds such a trivial matter until you experience the discomfort and embarrassment - the "wind" or rather, "gas", was horrendous, so much so that I didn't want to leave the house because I couldn't control it and it was awful, I'd be mortified if it occurred while I was with someone!! 😝😭😰😣 (apologies, I've tried to be delicate in my wording not a matter one wants to discuss on a public forum really!!!)

I finally tried dulcolax tablets after 4 days of 2xsachets of movicol and had a result yesterday morning. My tummy feels less painful and bloated now but I'm not sure what to do next, the movicol causes insane amounts of gassy wind for me, along with real discomfort, I wonder if I were to persevere with it perhaps this would lessen...? I think I may try lactulose as I've not tried this and I want to get things moving more regularly.

... so you see my dear twitchy, I thoroughly sympathise with your predicament!

I'd like to know how you get on, I am still on azathioprine which I began shortly after you began mmf and relate to what you said about the effects v benefits.

Also, I relate to what you said about your son. I have a son on the spectrum - he's number 2 out of 5, (the other 4 who aren't) and he's recently moved out and I desperately miss him living at home, but your description of living with a young person with asd is definitely accurate - larger than life and highly volatile. We somehow forget the bad bits and only remember the good bits of daily life with such a person.... Try to find the space to enjoy it though. (I loved your description of you and your husband being camped in your bedroom, ours used to take over the living room, ALL NIGHT and drive us nuts!)

The plus side is the loving effectionate side of their personality - at least with mine.

Take care and I hope you find a solution - please let me know if you do!

Xxxxx

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Sorry that you have similar responses to these type of meds Sootired. What you describe with Movicol is what I had with Laxido - and Senna syrup too latterly. I had high hopes for Mycophenolate in the first few weeks but I guess it's just a case of drugs which often cause diarrhoea in others just cause a slight easing of symptoms for me! X

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Just FYI, movicol and laxido are the same. Laxido is the generic and gets prescribed more often as it's cheaper.

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Yes I have picked this info up from what you and others said earlier. I think I'm going to have to pass on movocol too then. I found Laxido just agitated my whole system - won't go into details but it was ugh and I took it daily for a year! In the short term I'm sticking with Lactulose 60mg and going to get some suppositories when I'm feeling brave (or bloated!) enough. I think I do need some expeterise on this because to me it seems that my CRP and PV all soar up when I have severe peripheral nerve pain, extra slow bowels and extra bad fatigue. So to me these symptoms are linked and I feel that the laxido type meds just make things even worse. I know I'm flaring with now and because reflected in the pattern of my 2 weekly bloods - PV and CRP and slightly raised Creatinine.

If I continue to get nowhere re more specialist input with the IBS-c then I've decided to travel south and see Dr Liz Price, Sjögren's expert, for her thoughts on how best to tackle this. Apart from anything else I'm sick of trying to modify my diet constantly to no avail. I need someone who specialises and really understands my disease!

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Sorry, I'm going mad! 🙈

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No not at all a Crashdoll - you are one of the sanest HU members - especially considering you've not had any sleep! In fact I actually think that keeping up with anything at all despite chronic sleep deprivation must make us geniuses!!

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On all fronts your comment was good for me to read Soootired. You will understand that life has gone from juggling with fatigue and severe gut rot to orbiting emotions of every kind now that son is home! I do adore him but as an actual in-the-flesh-presence in our wee new house... heck!!?🤠😱😴🙃🙃🙃

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I struggle with more than a couple of days of my older daughter - not Asbergers but she has decided she has ADD. Certainly fits her history and behaviour! But OMG...

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Yes my son has decided same thing - in fact he and youngest both lay claim to this ADHD now but youngest is easy as pie - as is middle son. So I console myself it can't be parenting at least.

My twin sis in law is a nightmare person - a serious bully - but very high powered despite her disordered personality. And at least, unlike her, my son is at least very kind if you can just get past the bark and volatile outbursts and harness his gentler side. If only he wasn't quite so hectoring!?

When he was at primary school and already diagnosed with ASD we had a group meeting about him with a new headteacher. The autism support teacher and ed psych were both present and new head suggested OCD with ADHD (having watched him in class earlier). The old harridan of a class teacher snorted "or just obnoxious?!" and the ed psych actually stood up to express her outrage at this unprofessional outburst! However hubby and I shared a split second glance with each other expressing a wee jot of sympathy for indignant harridan!!

He's extremely clever - which doesn't help!X

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Snap. One day we are being told lots of negative things about our son, then suddenly the ep arrived and our son was "gifted"!

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I hope you get some relief soon Twitchytoes

I guess you've considered the potential for wheat intolerance and, as a long standing member of this forum are aware of the SSF advice for managing GI symptoms?

info.sjogrens.org/conquerin...

Also are you possibly on Calcium with Vitamin D supplements? Side-effects are common with combined calcium and vitamin D supplements and are almost always caused by the calcium salt. Gastro-intestinal symptoms are the most frequent complaint and include nausea, bloating, abdominal pain and constipation. I've just discovered this when wondering what's changed over the last 2 weeks to cause an intense GI issue. I've therefore stopped the supplements and will also try Magnesium as suggested by the SS Foundation.

Good luck!

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Ps I will print this SSF page about GI issues off to give my GP. My Sjögren's is thought to be primary because of 100% +lip biopsy but this can't be assumed as the pattern of my ANA is for Scleroderma or Polymyositis - so this makes me seronegative for Sjögren's- so this SSF page is particularly relevant. I'm on the AIP diet but have softened a little lately as all the meat and fish has been adding to the nausea. Many thanks! X

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Thanks. Well I was aware of gluten sensitivity and avoid gluten - but I definitely don't have Coeliacs and haven't observed any change in this problem with or without gluten tbh.

I wasn't aware of the calcium salt as potential trigger for tummy problems but I've been prescribed AdCal D3 for about 4 years now. The IBS-C (for want of better description) only started 2 years ago and my calcium levels seem okay. I wouldn't really like to stop without the support of my doctors . I did take extra D3 for a bit but rheumy asked me not to take extra D as i am probably getting enough already - not sure about this tbh but when I was deficient (got myself tested as GP refused!) taking AdCalD3 lifted me out of severe depression so I'd be reluctant to mess - especially as my thyroid bloods are usually far from optimal still.

I will ask rheumy about this though but last time I saw her 3 months ago she felt dysmotility was the issue. I might try taking D3 only for awhile and see if this helps my tummy at all. Thanks for the pointer.

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Really feel for you twitchy, bowel problems are the pits... after recent surgery I developed an ileus,started with a bit of diarrhoea but when I was x rayed I was impacted... well after being readmiited to hospital,multiple suppositories,enemas, an overdose of laxido and senna and waiting for bowel sounds I eventually had a "result"... I had never had any of these substances before so I only have this experience to go on...senna caused abdo cramps, laxido messed my system up completely and it took a couple of weeks to stop having urgent diarrhoea even after stopping it and then back to constipation!! Anyway, not to bore you too much I had some time to kill this morning and read the package insert of cellcept. It seems it is widely known for diarrhoea but also causes constipation. I know you are on quite a hefty dose so it might be worth exploring that with your rheumatologist. With all these meds it is always such a fine balancing act and sometimes we seem to trade one problem for another. I seem to be on a cupboard full of meds to counter act some or other acquired issue. Not saying this is the problem, I'm not really familiar with how sjorgens affects the bowel.

Sounds lovely to have a surprise visit from you son. Hope you get this sorted, it really makes you feel miserable

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Thanks so much Roly. Maribics' link above gives quite helpful practical advice but, at the end of the day, I've had this problem going on for nearly 2 years now and was always prone to constipation since I was little - partly because any drug containing any codeine at all acts like poison on me!

I certainly don't think the MMF has caused it but I think it's possible that it's made me less tolerant of Senna and even Lactulose. I had two weeks of going a lot when I started 9 months ago and was cautiously excited! This time up to 3g now I've noticed nausea but not any significant changes apart from excruciating tummy pain after Senna. But, like you, laxido affected me horribly (bloating, pain, wind) and that was well before starting MMF. I will speak to my rheumy but she's already decided it's dysmotility - and to be fair I have it listed as a main symptom on her predecessor's clinical letter before the MMF was introduced. X

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