Crohns and lupus

[Neiluk75]

Hi all. Saw the gastroenterologist yesterday and he has ordered an mri and some cameras top and bottom as he thinks I may have developed crohns or colitis to join my sle. I'm already on the treatment he would usually give for my lupus (pred. Hydroxychloroquin and aziathoprine) does anyone here have the same dual diagnosis? If so what meds do u take? He says they always come in at least pairs so he won't be suprised

[Eddie66]

Not crohns or colitis, but I've had diverticular disease and diverticulitis

nhs.uk/conditions/Diverticu...

which has caused many problems, I should have followed a better diet more strictly.

[tremarel]

Yes same here . Had colitis for going on four years now & lupus for over 30 years. It's horrible just non stop diahorria & incontinence . My gastro consultant has given up on me I tried just about everything. Nothig stops it & having had kidney transplant & have so much going on it's difficult. Hope they manage to sort u out soon.

[Author_ink in reply to tremarel]

Maybe I have Coiitus. I'm always in severe pain in my stomach

[Author_ink]

That hydrochloquiun tore my stomach up and gave me severe nausea and diarrhea. Looking for better meds

[misty14]

Hi neiluk

Sorry to read you may have colitis or Crohns as well as lupus!. I too was diagnosed with colitis seven years ago, big shock as they're quite rare to happen as well. Usually it's IBS because of all the stress!. Treatments are similar so tough if you have got it and are already taking Azathioprine. I had to come off that drug but it did help my bowel. Now it's just the steroids, oral and a topical preparation for flares. Good luck for your tests and keep us posted. Misty.

[Cann in reply to misty14]

The old belief that IBS doesn't turn into IBD is a myth - mine did!

[misty14 in reply to Cann]

Hi Cann

I'm so sorry it did, which one do you have?. As if lupus isn't enough for us!. X

[Cann in reply to misty14]

Crohn's inflammation throughout the gut, but luckily with the right approach I am able to keep it under control - by that I mean diet, stress management - both physical and mental, getting out and trying to get the right amount of Vit. d, exercise and the right amount of sleep for me. We are living in a dangerous world where some of us are too far from what nature intended for us, i.e. the sensitive ones, but we can do a lot to help ourselves.

[misty14 in reply to Cann]

That's tough Cann but good for you for self mansgement techniques!. It beats drug side effects if you can do it. I have U.C and try to do what you do. How long have you had it?. X

[Cann in reply to misty14]

I was diagnosed with IBS in 1994 after 2 courses of antibiotics - amoxicillin and tetracycline for a supposed chest infection, but then another doctor said it was asthma and I was put on steroids - slowly got worse.

Then in 2000 it developed to IBD after surgery and strong broad spectrum antibiotics for another suspected infection. I have had it for going on 17 years, but feel I am so much better and weigh 8 stone as opposed to under 6 stone at my worst in 2003.

Drugs just don't work for me and nor do supplements.

A supplement rep. once said to me 'Your body needs to do it with food' - interesting comment and astute observation, I thought.

[misty14 in reply to Cann]

You've been so badly treated by the medical profession Cann, no wonder you stick to lifestyle management techniques. That supplements rep was talking himself out of a job. Some foods helpful, some not specially in IBS and Crohns so don't entirely agree!. Take Care. X

[Cann in reply to misty14]

Diet is so complicated because we are all different and we shouldn't all eat the same food. We have different ancestries, experiences and toxicity levels to start with.

Different foods react differently with different people as we know from the saying 'one man's meat is another man's poison' - I was eating the wrong food for most of my life, but now I stick to what is right for my type.

Then there is the right time to eat and when not to eat. The only way we can find out truly unless we are completely connected to our bodies, which most of us aren't these days, is by testing or dowsing. I do this constantly taught to me by a brilliant practitioner who wanted to keep me alive.

Infections cause imbalance in the body and when subjected to any, I have to work really hard to eat the right food. I may be different to others, but then we are all different and so I am just normal. Food is medicine provided it is not tarnished with man's desire to change it into something that makes money!

You take care, too. X.

[misty14 in reply to Cann]

Hi Cann

What a fascinating subject and thoughtsthat do make sense. Is it possible do you think that the human genome will answer who should be eating what and when?. In the same way of customising drug treatments for patients which is slowly starting. X

[Cann in reply to misty14]

I don't feel it has to do entirely with the genome - more with a far more intelligent source.

We need to stand back from the scientific discovery sometimes and listen to the consciousness - that which even scientists don't yet understand the working of.

Have you ever done a healing course or experienced natural healing. If not you may not comprehend what I am saying.

Until the health system finds a way of testing for individual needs, I feel there is little chance of getting it right for everyone and this is why so many die annually from the wrong drugs and treatment.

The expert patient programme was a good start, but seems to have fizzled out; it raised how different we all are and how the practitioner patient relationship needs to be a partnership sharing information and adapting to suit each individual with of course the patient taking personal responsibility.

We need to get away from mass medication and start finding out what it is we really need!

[misty14 in reply to Cann]

Hi Cann

I do agree with you althoughI've not done a healing course. The expert patient program was good and is now done by a different charity under a new name. I was invited to a course recently by my GP but it was already fully booked. Do also agree about more patient responsibility is needed. The NHS will grind to a halt without it!. X

[Cann in reply to misty14]

That rep. was talking from his inner or higher self which most of us ignore these days. He was sincere in wanting to help people to get well and live. I can tell people like that and those who wish to dupe me!

[CRYSTAL11]

Hi love

Yes I have the same problems, it's hard to cope with. I have now gone gluten free on advice from my homeopath. She has lots of knowledge on diet and Lupus. So she has helped a lot. The devivtulites is very common as we all eat a really bad diet so most of the population has it but doesn't know. The gluten and dairy free are helping me. I have also had to have polyps removed so hope that helps when it's all settled down. Good luck with the diet it does make a difference but takes a while to see a difference xx

[1sam]

I'm sorry for your problems.

I have colitis but not Crohns, bread, spicy food and high fiber vegetables are bad for me ... I've seen improvement with the lupus meds (cellcept, mtx and calcort), even more than with the usual drugs for colitis.

I hope your Dr can find the right combination for you.

[Cann]

I read that NICE now recommends a CDSA to distinguish between IBD (Crohn's/Colitis etc.) and IBS rather than dangerous and traumatic sigmoidoscopies and colonoscopies. I refused it and the CDSA showed up IBD. I had to pay because it wasn't available in the NHS then, but I would ask now and still wouldn't risk tubes and cameras - I am very sensitive and any trauma can send my body into a flare, but good luck with what you decide.

As we know, inflammation can happen anywhere so in the gut is quite likely as well as anywhere else. I take no drugs, but manage on a good diet that I have researched helps inflammation.