Abdominal problems

[Kokica]

Hi, I need some help please... I have both, Lupus and Hughes, and have very bad abdominal problems, incl severe pain, cramps, extensive flatulence - regardless of food I eat, and so on. I've tried Buscopan, etc and nothing works. Any thoughts?

[Barnclown]

Sorry you're having such a rough time. This is miserable. I've spent a lifetime coaxing my upper & lower GI along 😏...and am currently being investigated by gastroenterology due to 18 months of a sudden severe persistent worsening of my chronic lower GI issues

I'm with iAmAnElf: have lots of questions...like: How long have you had these symptoms? How sudden was symptom onset? Have you discussed this with your gp? Have you had a coeliac blood test? Have you ever had a colonoscopy?

Do your lower GI symptoms tend to slow transit (constipation) or fast (diarrhoea), or both (mixed C&D)? i ask cause Antispasmodics (buscopan & mebeverine) are to be avoided in slow transit cases (antispasmodics make your transit even slower). Are you eating fermentable fibre? Because this can increase wind. Sounds like you've tried excluding food types (e.g. A Low FODMAP diet)?

🍀🍀🍀🍀 coco

[Kokica in reply to Barnclown]

Hi, yep had both lower and upper investigations and things were fine, as in no obvious problems. I'm never constipated; quite the opposite! Re: fermentable fiber... possible and I eat lots of oats and rye breads, as well as nuts and seeds. Worth a look. Thank you x

[Barnclown in reply to Kokica]

👍👍👍👍

This link may be useful:

theromefoundation.org/wp-co...

🍀😘🍀😘

[Kokica]

Thyroid is a problem too... last time I was this bad, was last July/August which led into three months of general unwellness, so I'm bracing myself. 6 months ago, I had upper GI investigation and all was well. Not Coliac and don't have much dairy. Will look into other things and thank you x

[Kokica]

Hi there, I've looked into Colpermin and will be getting some tomorrow am! I think using Buscopan feels easy, i.e. I'll just get that and it will do the trick... peppermint tea tends to help me, but not when things get this bad. Much appreciated, K x

[Freckle1000]

Hi Kokica,

Apologies - this might be a slightly too full on response:

I have nasty SLE and mild Hughes.

I think my main point would be that SLE can and frequently does effect the digestive system - as it has with me. I'm 49 and

- I've had a pancreas that failed to secrete digestive enzymes - (Get your lipase and amylase tested - simple blood test) The pancreas (and eyes and mouth) can dry up with SLE alone - you don't have to have the Sjogrens antibodies.

- I've had autoimmune hepatitis - get a Liver function test.

- I have atrophic gastritis - with part of my stomach lining now falling away from the stomach wall. This happened after years of a gnawing gut ache - (I was told it as anxiety)

- And now I have gastoparesis

* ALL FROM SLE

In my experience Rhuematologists and even some Lupus specialists tend to ignore stomach issues even though its not that rare phenomena for us.

My advice would be for you to firstly check you're not building up to a flare !!! (In some people gut problems are an early warning sign)

and you're blood isn't too sticky - (slowing supply to various bits and pieces).

And then - find a high quality Gastroenterologist who has a genuine interest in SLE Lupus who will give you a total going over from every direction. (These guys can be hard to find - but they do exist) Some of them can get quite excited when they come across an SLE patient - this is the type you need. Stay away from the bored and apathetic ones.

Hang in there until you have a proper answer. (Having scopes up and down the wotsits' doesn't really cover everything for SLE people. Lots of microscopic stuff go's on. Last time I had a gastroscopy I requested a biopsy too see if the SLE was active in the stomach lining.

ps. (just a subjective ps) I used to have severe stomach spasms - ie on the ground in a fetal position - as a reaction to codeine (apparently allergic to it)

[Kokica in reply to Freckle1000]

Many thanks... agree on flare! When I reflected on past events, that did suggest a pattern of a sort. I too can't take codeine, nor other strong painkillers which all have one or the other bit which disagrees with me somewhere down the line. Regards, K