Sjorgrens and IBS.?

[Shantana]

Hello. I am new to this forum. I have Lupus, Sjorgrens and anti phospholipid. I have IBS. Does anyone else have IBS that may be linked to Sjorgrens. My Lupus is not active so am reducing steroids after fifteen years. Now down to four mg a day but the IBS seems to be worse. Is that just a coincidence? Have tried various diet changes nothing at the moment seems to help. Thanks

[weathervane]

Hi shantana

I have sjogrens IBS and some other bit and pieces. I try to keep IBS under control with peppermint oil capsules . It has got worse at times when ive had a flare . I cant help you with the steroid affect, but certain foods such as raw onions garlic and very spicy food do not agree with me. I do find I feel better if i stick to a bowl of porridge in the morning as well 😀

[Shantana]

Thank you for your help. Will look into peppermint oil capsules

[SjogiBear]

Gastric problems with Sjogrens seems to be incredibly common but something that is not always mentioned. You might find the following links interesting:

painful-bladder.org/pdf/ch9...

bssa.uk.net/live/documents/... (you may need to be a BSSA member to view this document)

There could be various reasons for why the IBS type symptoms occur alongside Sjogrens and of course, there is always the possibility that it is not Sjogrens connected at all! Dryness can cause problems the whole way along the gut, dysautonomia associated with Sjogrens can cause slow gastric emptying, there is an increased chance of having coeliac disease alongside sjogrens, other food hypersensitivities can occur with sjogrens etc etc.

IBS is usually a diagnosis of exclusion so I assume you have fully discussed it with your doctor? Those of us with IBS type problems probably all find different ways of helping the symptoms - I use buscopan or colofac (when one doesn't appear to work I try the other), also peppermint capsules and tea, and I follow a gluten-free diet which has helped me significantly (there cannot be a coincidence that my daughter has just been diagnosed with coeliac disease at 11).

I am sure others here will have some other suggestions for you too

[Shantana in reply to SjogiBear]

Thank you so much. My Consultant threw his arms up in the air, said IBS nothing to do with him go to your GP. So I am now starting down that road. Will discuss with her

[Hidden]

I have Sjogrens and only developed constipation a year ago at the age of 53, just as my neuro symptoms became established. I won't detail but will just say that it's not like any constipation I've experienced previously! My rheum commented that he didn't see this symptom as related, unless it's caused by exocrine dryness -which he supposed it could be, but somehow it doesn't feel the case with me.

So I've decided it's part of the Dysautonomia which my neurologist acknowledges now too. Many with MS have constipation and Sjogrens, so I think it's part of the autonomic overlap. It gives me no end of problems -especially just now when I'm away from home.

I have reflux plus swallowing issues a horrid taste and severe bloating -all Sjogrens related too I think. I agree with others here, if you have IBS as a relatively new symptom and confirmed Sjogrens, secondary or primary - then GI problems affect so many of us with this disease that it can't be coincidence.

Time your rheumy wised up?!

[Hidden]

Hi Shantana

Unfortunately, while it may be related to a rheumatological condition, GI tract issues do fall under the remit of general practice and/or gastroenterology.

Gut issues have been my nemesis for a few years. I am under the care of the most wonderful specialist gastro professor who recommended a book called "Gut" by GuilIa Enders and said he tells all his patients, their families and medical students to read it. It's a fascinating read and very easy, no complex language or over medicalised at all. I highly recommend it.

I know what I'm going to say next will get me some flack but I'll say it anyway because is the truth. There is a recognised and accepted link between stress and gut symptoms. If your body has been under stress from other illness or general life stress or a combination of both, your gut may bear the brunt of it, so to speak. I'm sure we all know someone who gets diarrhoea before exams or their wedding. IBS and other similar gut disorders are not on the increase for no reasons; we live unacceptably stressful, busy and difficult lives. IBS affected 1 in 5 people, with women being more predominantly affected.

I agree that IBS should be a diagnosis of exclusion, so hopefully you've had some investigations. It could be all manner of things. My friend was fobbed off with IBS for so long and it ended up being gallbladder disease.

Yes, Intestinal dysmotility could be an option. This also shouldn't be diagnosed without tests which aren't pleasant but necessary. I actually asked my consultant when I saw him last week and he explained in depth. Firstly, chronic Intestinal dysmotility can affect the small bowel or the large bowel or both. Secondly, it can be a neuropathy (nerves) or a myopathy (mucles) or both. Different treatments benefit different people based on the pathology of their GI condition. For example, there is no point me being given drugs that bring water into the bowel because this still won't stimulate my gut because the nerves are damaged. The other thing is to with diet. If you have a GI motility disorder, you need to receive specific dietary advice which is basically; very low fat and very low fibre. This is not appropriate if your gut issues are related to other things as if, for example, your gut issues are due to opiate use, then you need to increase your fibre. Whereas, in a dysmotility disorder, you cannot digest it at all and it will cause more problems. Finally, you need to rule out any bloackage as a common co-morbidity which I unfortunately have is a pseudo obstruction which presents as an actual obstruction which is much more serious, so that needs to be ruled out. Hope this is helpful, he's a fantastic gastro who is the top dude and knows his stuff. I'm sure I could email him if you have any questions, although I don't want to pester him too much.

In summary, push your doctor to get investigated and take care. 🙂