Sjogrens disease

[Penbles64]

Sjogens disease

Has anybody suffered with wind and constipation.

[Spanielmadlady]

Patients with Sjogren's syndrome (SS) frequently have irritable bowel like symptoms (IBS). Some have celiac sprue. The current studies were designed to examine the presence of food hypersensitivities in a population of patients with SS and IBS.12 Dec 2015ncbi.nlm.nih.gov › pmc

Gastrointestinal disease in Sjogren's syndrome: related to food ... - NCBI

I have sjogrens and for me the cause of my digestive issue turned out to be dairy .since I've cut out all milk products things have improved alot and I no longer take ibs meds . Kind regards SML x

[Penbles64 in reply to Spanielmadlady]

Hi thank you I’m not sure if I have it yet but I have constant swollen salivary glands and a positive ana kind regards

[Mymittens in reply to Penbles64]

Hi, one side of my neck is constantly swollen, and the rheumatologist asked if I hadn't just put on weight!! 😯 What on one side of my neck?? So insulting!! But after an ultrasound it still didn't show that the salivary glands were swollen, but still me neck is swollen. My mouth is constantly painful and the corners of my lips constantly had little cuts, like paper cuts. Inside my cheeks is constant ulcers, and my tongue is so sensitive. The rheumatologist had just dismissed everything, my ESR is constantly high, but my ANA is high one test, then normal the next. I just don't know where to go next. Xx

[Betty909090]

Hi,

Wind, gastrointestinal symptoms and other gut problems often arise as side effects from medication. MMF is well known to give you excessive wind (flatulence) and systemic steroids eg Prednisolone often cause stomach upsets.

Hence proton inhibitors are often prescribed eg Omeprazole which reduces stomach acidity.

Trust this helps?

[SjogiBear]

Yes, yes, yes!!!! It is making life very uncomfortable. I've been in an IBS flare since last October and it does seem to be a combination of dysmotility, poor muscle tone(?) and lack of secretions ... oh and a heightened sensation of pain apparently (visceral hypersensitivity). I'm not constipated in not being able to go for days but rather in being able to push stuff out ... also seems to include wind. Colonoscopy and other tests all totally clear. In fact I'm paying to see a gastroenterologist privately tomorrow afternoon as it's driving me crazy. I have recently started a low fodmap diet which seems to have largely relieved the pain so I want to discuss this further. I've been gluten free for years anyway and my daughter was then found to be coeliac - there's a close relationship between the conditions.

Have you seen a doctor about your symptoms? It's very important to rule out other causes before just treating it as 'Ibs.

[Penbles64 in reply to SjogiBear]

Hi I am seeing a private rheumatologist next week , hopefully I will find out whether I have it or not

[OldTed60 in reply to SjogiBear]

I think it’s not actually IBS as such for many with SS. I was told that it’s autonomic or small fibre neuropathy causing delayed transit. IBS tends to be associated with starting in youth and being stress related. Autoimmune diseases can cause autonomic and other nervous system problems. There’s a test they can do to determine if yours is IBS or is to do with damaged vagus nerve perhaps. I had this test and it showed damage in a part of my colon and stomach so they become prolapsed and paralysed. It’s physiological for me and not stress related although it sure causes me stress!

The low fodmap diet is very helpful because people with slow transit can’t break down fibres, soluble or insoluble, so it helps either way. IBS is too non specific I feel.

[Mymittens in reply to OldTed60]

Hi, you mentioned test that they can do, any possibility that you know what that test is? I am a long sufferer of constipation and can go 2 weeks without going if I don't take laxative. I have been on ibs meds for years and they obviously don't help. I look about 8 months pregnant most of the time which really affects my mental health. I find myself not going out anywhere as I'm just to embarrassed. 😔 Xx

[OldTed60 in reply to Mymittens]

Oh dear I’m sorry. I have to say that I’m very distended always despite keeping on top of the slow transit colon with laxatives and irrigation. Think it’s a Gastroparesis problem having a very bloated tummy. It gives me anxiety too. Tests were gastric emptying study arranged by my rheumatologist amd colon transit study arranged by a different consultant - both last year. Both Gastroparesis and slow colon are thought to be neuro Sjögren’s but could also be scleroderma with Myositis as have weak muscles too. This is why I’m getting first IViG soon. Hope this answers your question.

[Beakybird58 in reply to SjogiBear]

I’m exactly the same. Not truly constipated but unable to actually ‘go’ - it’s a nightmare. I spend a lot of money on suppositories!Awful situation. Plan my whole life around my bowels! 🤦🏻‍♀️

[SjogiBear in reply to Beakybird58]

The gastroenterologist told me that all we can do is manage symptoms unfortunately. He did advise me to see a dietician to identify food triggers and properly manage a low fodmap diet. Apparently my various abdominal surgeries will also be adding to my problems with internal adhesions and scar tissue (I've had about six in total). It's very depressing because as you say, this dominates our day to day lives and I know my family don't understand what I'm going through and think I'm just moaning again.

[Penbles64 in reply to SjogiBear]

Thank you I’m seeing a consultant on Wednesday maybe some answers x

[OldTed60 in reply to SjogiBear]

Problem is they never will find treatments or cure if they won’t follow up “complex” patients like us. Also problem as I see it is that a lot gets presumed by doctors without proper investigations. And then we too blame our known conditions and don’t push for tests to confirm. So, as happening to me just now with biopsy pending diagnosis of lichen sclerosus and vulval cancer, doctors tend to look for existing zebras rather than checking to rule out other conditions.

[SjogiBear in reply to OldTed60]

Goodness ... that's a lot to deal with. Hope the biopsies are ok for you. You are right though: there seems to be total disinterest out there from the medical fraternity.

[Penbles64 in reply to Beakybird58]

I haven’t had a diagnosis yet at the moment it’s undifferentiated connected tissue disease hopefully the consultant will provide some answers on Wednesday x

[dg70]

It was oats with me. I used to have them for breakfast. When I stopped the wind eased considerably and bloating up like a balloon. I still have a slight issue with it and if you don't let it out it causes pain. It's not always easy in company. Trying low fodmap too and upping my gut bacteria as well with kefir, kimchi and pickles.