need help cant find any answers [ toilet ]

last summer i went 13 weeks without being able to leave the house,

i would eat and the food go straight through me.

doc gave me immodian any way problem almost went away and only once of twice a week

i got that problem.

then xmas day it started again only this time i lost 1 stone in 4 days. from then till now have lost 19lb, i eat the food goes through undigested and can on avarage be on the toilet for upto 4 hours a day. even drinking water can set me of i am not constipated ever.

if food stays in colon and i have not been toilet in the 10 mins then my stomach gets uncomfortable,

last week i had to have a colonoscopy [ camera ] day before had to take hospital laxitives and there was no food to come out, my body had already desposed of all food.

thats what it like everyday as if you have had a laxitives.

thing is i am end of teather with this, is this a lupus thing and if so do you get extra tablets of something,

ps they found a polyp and removed it, there was no ulcers in my colon.

got to go for a c/t scan i dont have i/b/s or celiacs.

any ideas on this? thanx

25 Replies

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  • Nicky it sounds horrendous. I really feel for you. But I have never had any experience as severe as this, either form lupus or from lupus drugs. Sorry I can't help you.

  • thanx hun, i never moaned so much in my life as i am at present.

    i usually just get on with it , may take a couple of days to get use to a new diagnoises

    but this i have moaned about everyday. i think if i am suffering then everyone one with in hearing distance is gonna suffer too. :: winks:: xx

  • We can not give you the answers you are looking for because we are not Doctors(I think we know more about Lupus than them)

    Have they thought of Diverticulitis or even Crones,

    I hope this gets sorted please let us know.

    Love & Sunshine

    Janx

  • yer i know hun, its peoples experiances that helps us.

    its like back in the day when i got raynulds and no one knew why i was so cold,

    i even mentioned it to a doctor and she said i have never heard of people having ice cold hands when they have not been outside. lol now i know millions have raynulds.

    diverticulas will look that up as my mum had that. xx

  • Ask your GP to refer you to a gastroenterologist and test for pancreatitis/autoimmune pancreatitis - lupus sometimes (rarely) triggers the latter, so check it, just in case.

  • gonna have a search on this on google see what treatments there are if this is case.

    its in case they rule out colitis or crohnes. under a gastro hun have to have c/t scan next week 20th feb. xx

  • Niicky I have a simular problem.... Last year it started and like you as soon as I had something to eat I had to rush and a lot of the time did not make it. I went to the doctors and was told if it carried on for more than 6 weeks to go back.

    What I found was that I was getting intolerences to certain things. I found that if I did not have to much dairy products it calmed it down. Also a more severe intolerence was a drug that I had been on for years Arthrotec. I was told by doctors that would not be the cause but I stopped taking it and the problem calmed down a great deal but as soon as I started taking it again the problem came back with a vengence.

    I still get the problem at times and have to work out what the intollerence is. I cannot take Hydroxchloquine because that causes the problem.

    The only way of finding out if you are getting these intollerences (so I have been told by doctors) is to stop having certain things and see if it calms it.

    I use Imodium Instants when it is bad, if I did not use something I would not be able to do anything or go anywhere.

    I have been told this is another symptom of Lupus

    Christine

  • whats Arthrotec used for hun?

    when i take the imodium on very rare times

    it causes really bad stomach pains,

    my colon is not happy unless there is absolutly no food in it at all. :( xx

  • Arthrotec (Diclofenic/Misonprost) is for Arthritis.

  • hi custard

    i see hun :) x

  • thanx everyone for replies. :)

    i am under the gastroenterologist she is really nice but i have heard nothing yet,

    so i guess thats good as it rules out cancer.

    i have tried the different foods and it would be i am allegic to everything even juices/water.

    as for meds makes me wonder, would not even know which meds to cut of for a few days.

    haha just been sat going through them in my head :).

    with colitis my colon was ok no ulcers, which disappointed me, as then i would have had an answer and they could have been able to fix it.

    my fear is if they find no answers to my problem as i cant really cope with this, it takes over your life.

    so if it was lupus related hopefully they could do something.

    your so right on us knowing more than the experts on lupus most of the time.

    seen a rheumy the other day she did not have a clue

    she also diagnoised me ostero-arthrits just by pressing my neck. xx

  • hi hun

    Sorry your suffering like this. I was the same when I was diagnosed with graves disease (overactive thyroid) I lost so much weight. It might have nothing to do with your thyroid but its just a quick blood test to rule it out....just a thought?

    Hope you find some answers soon

    xxxx

  • its well worth looking into lulu , past couple of weeks been going round in circles.

    thanx hope your thyroid is now under control. xx

  • Hi, I went through a similar thing but I was also being sick. It went on for 18 months, I was going through tests etc and then as soon as it started it just stopped.

    I have episodes now which last a day or a few days but I can normally put that down to something specific, like a new brand of food or eating somewhere new. It might sound daft but if I drink it makes it 100 times worse. I find that if I eat things like toast or muffins ie bulky foods it help to stem the flow until I return to normality.

    Imodium is a help when its really bad to stop me having to go and the booting you feel is not from the Imodium but from your bowel stopping.

    Chrones and colitis are pains to diagnose. My sister went from age 13 to 24 before being diagnosed. The problem is that you have to be in a flair for it to be diagnosed.

    Hope you find something out soon. Good luck. Helen

  • oh helen its a pain { hugs},

    i am scared of being like your sis and waiting ages for an answer.

    i think i may have found something with the meds i take.

    i picked up one of them procoralan. [ ivabradine]

    its for my heart i do need it though to save me having angina attacks and heart attacks.

    so a bit of a problem in case it is this tab.

    also i am allegic to aspirin.

    but i feel good if this is the problem, first time in ages can hopefully

    see an end to it.

    also while looking scleroderma can cause this problem, only glanced at it

    but am gonna do a proper search on it.

    i just blame everything on lupus lol. xx

  • Hi Nicky. My sister is 40 now so that was a long time ago and tests & medical science have come on since then. I have IBS in amongst everything else.

    I think it could be your meds. Go to you GP and ask them to contact you heart doc for an earlier appt, they can request it as it could be your meds. You need to get something else ASAP and if it stops then you know it was your meds.

    I had a reaction when I went to a different chemist and instead of Plaquine they gave me the other thing and I reacted really badly really quickly. She had to inject me with antihistamine and take tablets until it wore off.

    Just a thought the tablets you are on, have the chemist changed manufacturer, does the tablet have a coating on and now it doesn't. I can't take codeine but I can take Tylex.

    Lets hope its something simple or as you say it could be the Lupus and you are having some kind of flair that will end soon like it did with me.

    I hope you don't feel so alone now. we all suffer from the weird and wonderful things that Lupus throws at us. We are all in the same boat as it were. Hugs Helen

  • hi helen, i will ring the gp tomoz and see what he can do, i will also ring the hosi see if all the results from biopsies are back and if she can give me the answers over the phone.

    i would imagine things have improved from the days of your sister,

    interesting on the meds as i have a new chemist and the plaquinal he gives me are yellow.

    the nexium [ heartburn ] are blue capsules. he uses a different supplier from boots.

    and last year has been the worse health year in my life. had a stroke, blood clot on lung.

    the toilet probs constant lupus flaire. and ostero in neck also got loads of chest infections.

    think i should go back to boots.

    i will take the heart tablet tonight till i speak to doc.

    thanx for help :) xx

  • Hi Nicky, It may be worth trying Aloe Vera Juice (currently on special offer at Holland & Barrett - 2nd bottle 1p) ..just a thought - been good for my digestive system. You may not need the heartburn tablet when taking the juice. Good luck. Thinking of you. xxx :)

  • hey thats good, i like holland and barrett wonder if anyone is going to town today.

    will have a look at the web page thanx hun xx

  • Hi Nicky, your the opposite to me. If I get tablets from boots I'm ill. My preferred chemist is my local Co-operative. When I started with all my meds the main guy asked to see me and discuss my meds and he asked me why I take them. I said Lupus Fibromyaliga etc. he went away and two weeks later phoned me and asked me to come down. He had found out that one of my tablets in a certain make reacted to Lupus and he wanted to order a different make in and to make me aware. When they changed Plaquine after it could be sold by other companies I reacted. I phoned and told him. He ordered Plaquine back in stock but he thanked me and said he had another patient with SLE and he would phone her and she how she was.

    I think that's awesome of him to do as its above and beyond his job specs. I even phoned the head office and told them. Oh the tablet was a Vertigo tablet that is now not available (wonder why). X

  • sorry helen just seen this, there are some excellent chemist out there, so with the plaquinal cause you got a different supplier you reacted even though it said palquinal on the box? interesting on the vertigo i have mates who have this. glad the tab has been taken of.

    years ago was on anti-inflam and it worked great i went to get a repeat and they had took it of the market as it was killing people. x

  • I have just had something very similar & after going in2 hospital & having xrays, ultrasounds etc, they could not work out what it was. It's not a reaction 2 meds in my case as I don't take hydroxy or anything & we can't link it 2 anything obvious (different foods etc). Obviously if u have SLE, it can attack ANYTHING (my bowel was 1 of the first things the lupus went 4 when I was diagnosed & I had 2 have my colon removed) but then again, u may even have an underlying infection or have picked up a little bug but even though it's not apparent, it's still affecting u.

  • hi sher, yer i have had heli prolactor polyri [ cant spell it ] twice in the past,

    i am gonna phone the hosi in a min,

    if i am like you and no answers are given how do you cope it?

    i know i am jumping the gun on this and with all answers

    i just cant cope with it anymore.

    i need to learn to cope.

    its strange i can cope with everything else this lupus throws at us,, [ dont like the lupus headaches though but i remain quiet on those and go to bed ] but this everyday i am moaning.

    so now your colon is removed and you are still suffering? xx

  • My colon was removed cos it was being strangled by blood clots & had died. That was over 18 years ago & have had no problems since (apart from adhesions occasionally) until a few weeks back. The Docs r at a loss as 2 what it could b & r just putting it down 2 lupus & the fact that my ileum is a bit 'delicate' as it's had 2 work twice as hard 4 years but I'm not convinced myself. I'm just getting on with things as best I can & avoiding eating anything if I'm out until everything calms down.

    As 4 the headaches, try 2 learn the different types of headaches as some pain meds work 4 some & not others etc eg if it's a sinus 1 Ibuprofen (with CoCodamol if needed) should work on that but if it's a tension headache, u're better off using Tiger Balm (CoCodamol SOMETIMES helps). Of course SOME headaches just won't shift no matter what u try :(

  • wow sher sounds horrendous, glad you went so long with out problms. i really hope they find an answer for you or that it just goes away.

    yer the headaches are a pain in the rear excuse the pun.

    luckily i dont get them that often. i use the the anti inflams etc

    gotta go holly oaks is starting :)

    had a phone call form hosi they did as they said which is good. [ phone back ]

    anyway the poylp was not cancer. so on that i am over the moon. xx

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