STILL have diarrhea...scared....

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Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 11/16/2007 11:20 PM (GMT -6)   
Hey everyone...its been a couple more weeks and I still have diarrhea. I took a stool sample like you all suggested and the results came back negative for any serious viruses or bacteria. So a clon infection has been ruled out but I still have very soft stool and it is kind of scary because I dont know what is wrong with me.

This morning I woke up and (this is REALLY gross) my underwear was filled with diarrhea. I guess while I was sleeping....It is scary that I cannot control it. Does anyone have ANY idea of what this could possible be???

I am going home for thanksgiving today but when I come back my doctor said she is going to run some more tests and that it might be some kind of bacterial imbalance. what should I do?! has this happened to anyone before?
I have no other symptoms that I know of either besides this diarrhea. No temperature, cramping etc. But I am really worried about my leaky bowel so I hope someone can help me!

Regular Member

Date Joined Aug 2006
Total Posts : 334
   Posted 11/17/2007 9:20 AM (GMT -6)   
Hi Miscali,
I haven't been on in a while so I have missed your other posts. My daughter had real trouble with diarrhoea for years and still occasionally suffers now. She has something called IGA deficiency and bacterial overgrowth. Bacterial overgrowth doesn't show up in stool samples, only from more invasive proceedures. Your doctor could maybe send you for futher investigation by a specialist, especially as the diarrhoea came on sudden. Any change in bowel habits sould be completely checked just to be on the safe side. Chances are this is a temporary thing, nothing to worry about and will clear up on it's own. Could you be eating something that you haven't had before? I do hope this clears up soon for you, but you must insist that your doctor looks into this further if it doesn't. take care x x
CPLE, probable SLE, Steroid Induced Diabetes, proctal fugax, anismus, slow transit constipation.
Prednisoloe, 30mg
Glicazide 80mg x 4 daily (for diabetes)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 11/17/2007 12:53 PM (GMT -6)   
Hi Misscali,
I have had a lot of D issues in the past as well.  Lion had some good advice for you.  A small bowel followthrough is likely what your doctor will test you with.  It involves fasting for 8 hours and then drinking a barium drink so that they can do some special xrays. I had one scheduled for this Wednesday actually, but I can't fast that long (bad hypoglycemia), so they'll have to do a scope instead.  My D issues stemmed from this past summer when I had a medication allergy.  I have no D now, but they still want to check out my bowels.
I had the same horrible issues as you. D coming out uncontrollably.  I found that wearing an overnight maxi pad made all the difference.  I sometimes wore two.  Whatever you do, don't start taking any over the counter remedies for this.  You might make it worse.  Definitely get more advice from your doctors first.
Are you drinking lots of water?  That will help too.  Don't get dehydrated. 
Take care,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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Date Joined Jul 2005
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   Posted 11/17/2007 5:03 PM (GMT -6)   
I'm sorry that things haven't gotten much better for you. It sounds like the others had some good ideas for you. I need to talk to my pcp or rheumy about some tests too. I constantly have very soft stools and go about 5 times every morning and then some again in the afternoon. I haven't lost control yet though - that would be scary.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 11/17/2007 11:11 PM (GMT -6)   
Hi miscali--
I have it all the time and they say its Irritable Bowel Syndrome with chronic diarrhea. Sometimes it is very bad and extremely painful. My gi doc is ok and does colonoscopy and endoscopies on me. I did have a colon polyp once that was cancerous and often have irritated patches that bleed in my colon and duodenum and they biopsy them and there is no cause so they assume autoimmune, though I don't test positive for anti smooth muscle antibodies or whatever the antibody is for it so I'm not sure they are right. You might switch to drinking bottled water, steam distilled is the best since some spring water is really just drinking water from another part of the country and more expensive. I'm learning that levels that are considered safe for many people of certain chemicals in city or well water are not often safe for people with illnesses, and I didn't know that the water treatment places and testing places let it go that high.

My mother and I had a really bad bout of something very bad once and it lasted like two months and it was horrible. Finally a medicine called flagyl cleared it up but it took like two doses.

Is your food digested? If not, mine isn't usually, I eat and then out it comes, and the gi doc told me that that's a sign of small intestine problem vs colon problem.

Sometimes medication allergies come like this, and then after a month or so of diarrhea you get a rash, I've had that happen. Food allergies can do this too. I imagine they put you on a bland diet to try to rule that out.

You might have them check your liver function in bloodwork if they haven't. I've been living with this kind of thing off and on for years now and I hope that you don't have to because its ruined my colon and there's no excuse except the docs don't know how to diagnose or won't run the right tests to diagnose anymore.

Glucophage can be really irritating and cause diarrhea in most people if you have any tendency toward irritable bowel or bowel problems too.

I would try to get the scope done, like colonoscopy/endoscopy if they will do it because even though they have to put you out, you probably can't keep the barium in anyway due to the diarrhea, and with the scope they can diagnose a lot more and they can do many things while they are in there to fix problems, see irritated patches they can see with barium xray, take biopsies and remove polyps and you are knocked out when they do it.

Well, I hope your doc gets on the stick and does something. My doc has his own endoscopy center right there in the office so if theres any question, he just goes in and looks. I know other people have to have it done at the hospital. I hope you feel better soon.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2007 2:05 PM (GMT -6)   
Hey Cali,

I'm SOooooo sorry you are still dealing with this. ((((((((Cali))))))))) Its frightening too. I have had periods of time where "it" just happens too. No warning . . . just . . . phtttt. I never found out what it was/is. But mine never last so long as yours. I know that I have inflammatory bowel . . . but that is painful and the other wasn't.

Sounds weird . . . but I give my pups canned pumpkin if they have lose stool. It works right away. Don't use the pumpkin pie filling . . . make sure it is the 100% pumpkin. I think it tastes fine, but if you don't like the taste, you could warm it and sprinkle on nutmeg and cinnamon or stir it into some soup. The dogs love it. It will actually work for constipation too.

Hoping the docs get it figured out soon.


In His Grip

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Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 11/20/2007 2:23 AM (GMT -6)   
hey everyone! thank you so much for the support and advice. It is good to know that I am not the only one with this issue...I am still having diarrhea but I think it is digested and when I get back to school after thanksgiving I will do some more labs that my rheumy ordered for me. My doctor said as a temporary relief I can take imodium (which was very embarrassing to buy at the grocery store by the way). My rheumy also told me that perhaps it is due to a bacterial imbalance so I should eat yogurt with active bacterial cultures to maybe regulate me. I was once on high doses of antibiotics which could have screwed up my bacteria colonies in my intestines but that was almost a year ago so would it take this long for me to react?

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Date Joined Dec 2005
Total Posts : 1950
   Posted 11/21/2007 6:13 PM (GMT -6)   
Could be anything from fast food (bad meat imported from other countries), to too much yeast, bad water, definitely antibiotics. I think in some cases it may take some time. Don't feel embarrassed buying immodium. I used to buy about twenty big jars of metamucil at a time for my horses and got some good stares.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Regular Member

Date Joined Apr 2007
Total Posts : 81
   Posted 11/23/2007 9:00 AM (GMT -6)   

Hello there,

This has been happening to me for a while now, it is accompanied by vomiting at times too.

I have had CT scans done and they showed up a 'formation' of something in the colon.  I am having a colonoscopy done next week.

I was given codeine phosphate to stop me having the diarrhea, thing is though at times it makes it difficult to actually go to the toilet, so it is swings and roundabouts.

This following bit is just for information and I hope that it will bring home how important it is to push and push our doctors when we don't feel quite 'right'.  I know the tendency by a lot of doctors is to say whatever we present with is lupus connected, but what happened to me just lately shows that it might not be.  When they did the CT scan on my bowel, part of my right lower lung showed up.  I am so glad it did because I am now query lung cancer.  They have attempted to do biopsies but the mass is gelatinous and so they can't get anything out so I am having to go over to a mainland hospital and have a general anaesthetic when they have ironed out the worries about my complications with my SLE.

I do so hope you feel better soon.  Please do push for further testing.  Take care.  

goldenwings  yeah

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 11/23/2007 11:21 PM (GMT -6)   
Just a thought. Any chance you developed a sensitivity to gluten? It isn't uncommon in lupus patients (ask me how I know). The big D is a telling symptom, though there are others.
Good Luck. I hope you are feeling better.
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Meds: Plaquenil, Zyrtec, Prilosec, Nasacort, Prednisone, Prozac daily.
Meds: Epinephrine, Benadryl, albuterol (as needed).

Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 11/24/2007 3:46 AM (GMT -6)   
hey there! thank you so much for responding...
goldenwings: im so sorry to hear about your recent health issues, i hope everything comes out clear. I also might have to have a colonoscopy if this diarrhea thing doesnt clear up soon and my stool samples keep coming back clean as well...

I am not sure if i have developed a lactose intolerance but i do not think so just because no matter what i eat, dairy or not, i still have diarrhea just the same...

i have been eating Activia for a few days now and i STILL have "mud butt" so i am hoping my doctor figures out what my problem is very soon because it is getting so inconvenient! ( i went shopping today and had to stop twice to go to the bathroom...and i HATE using public restrooms...especially for number 2s...)

Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 11/26/2007 2:28 PM (GMT -6)   
hello everyone...
i thought i would give you all an update because im still very scared.
today i woke up in my boyfriends bed and there was diarrhea....everywhere.
it was so embarassing and horrible. what is wrong with me?? i called my doctor right away and ordered some more scripts and said i might have to have a colonoscopy.
but im so scared...why couldnt i feel it..why dont i have any bowel control? im really scared that there is something seriously wrong with me...
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