Mrs Caroline marshall

Hi I was first diagnosed with Raynauds about 16 years ago which has got worse over the years, then I was diagnosed with systemic lupus erythematosus 15 yrs ago I am now 56 yrs old and body has got worse over the years in the last 9months I have had gall bladder removed right hand and trigger finger and then left hand operated on due to damaged nerves also have bursitis fibro and scelerdoma now going to see a colon rectal consultant on 30/11/15 to see what is happening with the bowel it just seems never ending of what is going to happen next

6 Replies

  • Hi jellybaby12, I also live with SLE & Rayneuds (& 3 other health conditions). Reads like you're going thru difficult & challenging time. The cold mths are a nightmare for me now, that when it's more active. I'm praying that I get thru' this winter ok. Having active random symptoms is scary stuff. It does seem never-ending, which is part of my frustration. That & the not knowing. I pray that you will have a speedy recovery. Keep the faith, have hope in your heart, be kind to yourself, reach out for support & be positive. Do what you need to sustain your well-being & healthy. Positive blessings to you x

  • I understand what you're saying. You've been dealing with this for 15/16 years now, you'd think the disease would 'get tired' and burn itself out. No such luck.

    I don't know what to tell you. Just that somehow you'll find a way to go through it. As you did so far. We are extremely tenacious when it comes to surviving.

    Good luck with your appointment, let's hope is "wear and tear" and nothing else.

  • Thank you had my appointment with the consultant to day I have to have another colonoscopy, I had one two years ago where they found big polps which was removed, I then had one again in January when they found a large stone in gall bladder I had gall bladder taken out in April since then every time I eat I am in constant stomach pain, the stomach swells and then lots of loud noises start then a constant urgency to go to the toilet and some times I have no control of it and I keep passing wind which has a smell like rotten eggs, and the pain has now started to go round my back I have also lost weight has any body else had any symptoms like this and what it might be.

  • Hi jellybaby.

    I believe its possible that some people who have had their gallbladder taken out - can develop problems digesting fats ? To be honest I don't know much about the specifics - but it wouldn't hurt to mention the possibility that this might (?) be what's going on to your Doctor/s.

    I can't digest fats well due to sjrogens effecting my pancreas' ability to secrete digestive juices.

    I take Creon ( digestive enzymes in pill form to make up for this )

    ps. Chronic lupus makes you want to scream. Its grinding having one problem resolved, only to have it replaced by another.

    Hoping you can find a big long gap of good health soon.

    When you're so burnt out from it all its easy to forget that its possible to regain a tolerable good health again.


  • That is so true lupus at times takes over your hole body and you have no control over it,and you never know what or if the next symptom will be. It seems so long ago that I had a good day. With the digesting fats? Can you suffer with the pain in stomach and back plus the other symptoms

  • Hi Jellybaby,

    I'm sorry, I cant really give you a clear answer, because while I was having digestive/pancreatic issues, I was also developing some serious kidney problems. (Some overlap kidney/pancreatic symptoms were abdominal bloating and very painful acidic bowels) I also have a mild pain on the left mid side of my torso that radiates to the back, but my most dodgy kidney is the left one. So differentiating symptoms is a bit of a shamozzle for me.

    When my pancreatic symptoms where at their worst, (sorry this is a bit gruesome) but my poo did not smell like anything from nature. It actually frightened flies. More like an oil refinery mixed with sulfur that someone had decided to set on fire. I also produced about 5 times too much of the stuff. I didn't have cramping or urgency issues.

    There is a test for inability to digest fats, a 24 hour poo test for steatorrhea. I actually tested negative for this, but this was due to me being at the less serious end of the problem.

    I was eventually diagnosed with mild pancreatic insufficiency by a Gastroenterologist/Endocrinologist, who said that because my pancreatic secretions were sometimes a little low - and/or sometimes non existent (due to sjrogens) it had badly upset my gut balance.

    When I started taking the Creon it felt like it had saved my life, as I had become extremely weaked by it all. (it did fix the wierd poo too)


    I believe its very rare and unlikely, but SLE can effect the pancreas, so It wouldn't hurt to ask your gastro people about this.

    Also - I have no idea wether this is accurate - in all likelyhood not - just something I read on a very dodgy web site. But it claimed that gut problems can be a precipitating sign of a Lupus flare - as a lot of the immune system lives in the digestive tract ? Others on this site would be more qualified to comment on this than me.

    Sorry. Way too much information I think. I wish this illness was less complicated so we could all get on with the important stuff like watching some bad TV.

    I hope something I've said is of help ?


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