Problems : Hiya everyone I've not posted for ages... - LUPUS UK

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Problems

laney profile image
10 Replies

Hiya everyone I've not posted for ages. I was wondering does anyone else suffer with there bowels.

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laney profile image
laney
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10 Replies
amandalilley profile image
amandalilley

Hello. This has always been a problem for myself. In fact since the meningitis and septicaemia 2 years ago it has got alot worse.

Mostly presents with severe lower (above the vigina, outside) pzin, cramping , pain on opening of bowels, no blood in stools but in urine most if time, plus lucacites, protein, general infection markers. They say its my transplanted kidney playing up.......have only one at 50% but unfortunately not been working well since put in.

I am in a severe flare with it at moment...cannot eat at all wihout the squezzing effect happening, it radiates across under my transplanted kidney at front, alll the way round in a band which then radiates upwards to my chest agrivating the Costrochronditis and can be crippling resulting in tears of pain.

Had scans, x rays etc etc no joy, changed diet, no joy, just severe pain down below, can drink water and fuzzy water at the mo but no tea,  coffee, chocolate etc. Suviving on baked crisps and kit kats.... great diet plan.... lol

I have no answers I am afraid and I am not one for advice as there are very many more qualified peole here, especially the admin,  but I can empathise and understand and to be honest this is not a subject that people openly discuss.... lol.

I can go from diarrhoea to constipation in a couple of hours and my tummygoes from hard to soft accordingly - going out can ge a challenge, toilets, pads, change of underware etc..... ohhhhh such fun is our wonderful dusease.......😃

I hope you find a solution soon, people here will help and advise and may the universe grant you strength and courage to be able to look forward for help and a diagnosis.

Take care

Mandy.  X

Ps  have a look at the sympton tbreads on ghe right of your screen, there may be some people there who can help too.😆xx

sarahsch profile image
sarahsch

I had a problem before I received treatment. Chronic constipation. I think it can be caused by vasculitis of the bowl. Nothing seemed to help, but is much better no I'm on hydroxy. Sarahx

fiona14 profile image
fiona14

I've always had trouble with my bowels (IBS) since I was 15. I'm now 59! I have Sjogrens Syndrome, SLE, and Hepatitis. I think the Sjogrens part must have been creeping up on me since then!  I can be ok for a few days, then wallop! It erupts again!  Think I have a problem with wheat and gluten. Can't eat wholemeal bread. Anything high in fibre is a no for me. Trouble is, a lot of things are high in fibre, fruit, veg. So trying to eat healthy is a difficulty. I've just found that Tesco do a gluten and wheat free bread seeded loaf which seems to help a little. Not looked for other types of food in that category yet. Trouble is, it costs a bit more.

misty14 profile image
misty14

Hi laney

Any change of bowel habit should be discussed with your GP. IBS is very common with lupus not surprisingly when it's brought on by stress!. You might want to see if certain foods trigger your symptoms if you get diorrhea. My bowels suddenly changed 6 years ago and I had tests and was diagnosed with U.C to my shock so it's not something to ignore. X

laney profile image
laney in reply to misty14

Thank you for your reply I will see my consultant 

misty14 profile image
misty14 in reply to laney

Hi laney

Good luck!.X

Barnclown profile image
Barnclown

Hello Laney

Am 62 and my lupus is infant onset.  I've managed bowel probs all my life.  

You've got some great replies

This website has helped me a lot to understand my bowel probs & to manage them:

iffgd.org

🍀🍀 coco

Foss profile image
Foss in reply to Barnclown

Thanks for that link Coco it is brilliant.  

Foss 

Barnclown profile image
Barnclown in reply to Foss

glad you think it is: me too!  i was AMAZED at how well the site explains ALL my chronic stuff: upper & lower GI, all the investigations, all the diagnoses, all the lifestyle management & meds...for the first time in my 62 years, i felt as if health system insiders were 'fessing up' to me about EVERYTHING....and really truly wanting to reach out to those of us who live day to day with this stuff...as if these medics really want to help us.  knowledge is power!

Silviag profile image
Silviag

Part of this sickness is food and its absorption. Diet is a must , no sugar, no grains, no starchy food, no diaries, so there comes steamed brocoli, cabbage, avocado, chopped parseley,  finely cut onions, fresh garlic for flavor but for health, use probiotics, bay leaf extract. Many of the medications like cortizoids are as poisoning as the sickness itself and worsen the condition promoting candida. So your healthy organisms die. You need to stay of sugar and starches. Exercise as much as you can.no caffeine (tea or coffe) no alcohol.

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