Bowel problems with Lupus

Been having bowel problems for years with Lupus and Scleroderma my doctor prescribed tablets to control it I had the camera 2 weeks ago and Im just waiting for the results but now back to square one with loose bowels so another trip to the doctors.Any one else having the same problem?

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  • I have been suffering from really bad pains on eating, first TOLD it was IBS which I first think it was, but have been told that I have calcification of main artery and so awaiting for CT and perhaps a stent all down to Lupus and APS The pain is quite dull and I just do not enjoy my food any more also had a bad experience coming back from ST T on train when I was sick and it was the longest journey ever. Just want to get it sorted.

  • Hi Jennie

    I have bowel problems too and have had 2 admissions in past month for same. I went to see colorectal surgeon the other day and had the shocking news that I require major surgery . Will PM you if I can work out how to as I feel very sensitive about it

  • HI jennie73. I too have lupus and like yourself had the camer and a CT scan two weeks ago. I am now awaiting results, maybe we could compare results? I also have some issues with my liver (it's no functioning correctly or happy is what they say) my bloods are showing something is wrong. My memmory is such that I find it very difficult to keep up with what is going on with my health, I suffer with chronic fatigue and lethargy which seems to rule my life. but do the benefits agency (WDP) understand? Not a chance, It's so difficult, but chin up eh?

    JEFF

  • hi jeff i to have lupus and fibromyalgia and i got turned down for dla not ill enough i reckon they should have a member on panel that either knows about the illness or haves the ilness or illnesses so they know exactly what we go through day in day out and lately i found that everytime i eat i get terrible stomach cramps after ive had it for 2 weeks now is this another thing that a patient with lupus got to go through suz

  • Sorry to hear all your problems. I think it has to be the most sensitive area to deal with, hence we just put up with it. I have suffered constipation all my life just controls was told it was ibs no one would accept it had anything to do with my Lupus. For two years I have been unable to actually go with out help with medicine, my doctor just said it was ok to have laxatives which it is not. I have paid privately and was prescribed a medicine which works at the moment but it won't be for ever. No one really understands how it takes over. Good luck with you all nd let's try and talk about it a little more. X

  • OK , reading Gillyg's post maybe it is sensible to share and also unfair just to throw it all at poor Jennie !

    I have had Lupus symptoms for many years which started after the birth of my son and at this point antibodies were detected and had concurrent episodes of what was then diagnosed as Glandular Fever ( joint pain, fatigue, extreme anxiety, rash etc ) looking back it is considered it was Lupus and a German doctor actually suggested this many years ago when I was living in Spain.

    For the past few years , about 6, I have suffered from extreme abdominal pain it baffled colorectal surgeons and was referred to gynaecologist then and went to and fro between them with no definite answers so a sub total hysterectomy was performed. To this day I think it was a stab in the dark (please excuse pun!) . My abdominal pain has continued on and off. CT scans and colonoscopy showed mild diverticular disease which was not thought to be the main culprit . My colorectal surgeon noted I had joint pain, low grade fever, absolute fatigue , cognitive problems etc at every event and referred me to a rheumatologist. I was diagnosed with SLE last year.

    I have had 2 admissions in past 5 weeks with high CRP ( over 200 on firsf admission)and raised ESR . These events have somewhat baffled surgeon but they present life risks as last time I had a bowel perforation.

    Earlier this week I had the distressing news that it was felt I needed most or all of my bowel removed, this is long and major surgery (6 hours) with risks. Life after uncertain. There is so much uncertainty around cause , actual procedure, life after I feel overwhelmed. My surgeon does not have much experience of Lupus and just wondered ifanyone knows more ?

    Sorry if this is a bit disjointed and rambling but brain bit overwhelmed.

  • Hi kirsty2510 , bless you life can be so difficult with Lupus and everything that goes with it. Knowledge is the only thing we can empower our selves with. Never stop trying to find out things because what ever doctors say things are more linked then some of them will accept or even want to find out. I wish you well sorry I can't give any positive advice I still struggle myself with doctors thinking I am waistng there time. My Gp recently told me he didn't know anything about Lupus what a great help he is going to be he doesn't seem to want to find out. I have been diagnosed for 24yrs but had symptoms for 30. Good job I have a good consultant. Wishing you luck.

  • my GP is great he listens and understands my consultant I find thinks its a joke sometimes so I come out of the hospital no better off at times.I'm dreading the results from the camera 6 biopsys they took for past few days I've felt awful with the bowel problem and really tired yesterday I slept all day woke up and dont remember falling back asleep thats how it affects me like today was the same no energy but like you kirsty Im now getting abdominal pain really bad especially today I'm not enjoying my food at the moment either I also had full hysterectomy last april.Yes Jeff that would be great if we could let each other know the results keep in touch.Big hugs to you all xx

  • Hi Jenny73,

    Sometimes people with lupus can suffer from a Gluten intolerance which causes bowl problems. Have you ever looked into this as a possibility. It is another autoimmune condition and is called Coeliac disease.

  • Hi,

    yes I've also had the camera down as I suffer from a gurggling sound and my food does'nt go down really well and I've also been woken up through the night choking on sick. xx

  • Hello, I too am having bowel problems, have been throwingup since xmas and have lost over half stone in weight. Was told year or so ago have diverticulitus, but I don't think I have. Have been looking things up, cos thats the only way to find out, and it looks to me like I have ceiliacs desease., which I have found out is quite common in lupus patients, so am now being tested for that - just want an answer like all of us. Hope you all find out why you have this problem and best wishes to all.x

  • I hope you find out soon what it is and that they can sort it out soon as possible for you xx

  • I have bowel probs too, have done for about 2 years and was diag 6 months ago. I had a colonoscopy which showed nothing. This month i am starting a special diet. I have researched loads of stuff about diet and auto immune diseases and the two things they all hint at are dairy and gluten intolerance which could make symptoms more severe. I have a big family, so thought this would be a nightmare to do but there is loads of info on the net and supermarkets have many alternative products. Hope you feel better soon x

  • Hi Jennie I've had bowel problems too but after having loads of tests & having the camera I was diagnosed with campylobactor, an infection in the bowel. I was then treated with a load of antibiotics and had to have the camera again and this time took 10 biopsies. After everything & the infection cleared they said I have ibs. I have awful trouble going to the toilet now & pain & bloating all the time. Always something hey ! Most probably another cause of lupus, the list is never ending. When one thing clears another problem starts. I do hope they get to the bottom of things for you soon !!! & everything settles down for you.

    All the best x

  • Same here I get really bloated and I know what you mean one settles down another one starts nightmare Thanks everyone taken all your comments on board xx

  • Hi Jennie :0), sorry to hear about your health problems, I empathise with you (all).

    I have suffered with stomach problems for 23 years now, countless 'gastroenteritis' episodes, had constant 'upset stomach' & morning sickness for years, had cameras up & down, Dr diagnosed IBS, herbalist diagnosed 90%!!! Candida Albicans (went on their eating plan for 7 months & I have never felt as fantastic as I did then! :0), been told that NO nutrients are going into my body..& now, I have an 'upset' stomach for several days each month & regularly feel nauseous & have no appetite.

    I refuse to take conventional medication (& wouldn't take it when Drs tried to give me it, eg for IBS) for as long as possible, because I don't believe that by us taking it, it will help in the long run! (how can putting MORE toxins into your body help!?!) & the body CAN & Does heal itself, given the correct chance to do so :0).

    Sending you healing thoughts x

  • Try Yakult, this has helped me cope.

    Good luck

  • Hi Jen I too can join the club. I have had problems for years. It is fascinating reading what people put on the forum as I certain do not feel so alone. I do find avoiding bread and not eating too many wheat products help. Have tried gluten free but did not make a big difference. X

  • hi everyone ive read all ur comments and am amazed ive only been diagnosed for 2 years 2 weeks but believed to have had lupus since giving birth 15 yrs ago nobody in my family has it and ive gone from being an indepant working mum of a special needs child to claiming esa and forgetting my own date of birth!!!! but i read some of your comments and some of u have been suffering for over 20 years and i think god if you guys and girls can soldier on so can i but i wont lie im finding it hard wot with fatigue and chronic insomnia i have 2 be my sons brain 2 and got its hard but im going 2 keep reading the blogs on here and onwards and upwards :)) sending spoons to one and all

  • I know this is an older posting on here, but a new thing for me is bowel probs...In this last month outta the blue, constipation off and on...then normal., .then loose bowels....etc....I eat really well, so Im not sure if its a lupus thing, post menopause thing, or hypothyroid thing.....or all those things:( I also had this taste in my mouth like sour lemons that came and went...real strange.

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