really embarrassing...

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Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 8/24/2008 11:14 AM (GMT -6)   
hey everyone....

this has happened to me a few times now and its it absolutely horrible.

I wake up and I find that I have had a bowel movement while I was sleeping...and it is all over me
It is always loose stools obviously but I dont know how to prevent it and I dont know the cause. One time in the middle of the night I had to wake up my boyfriend because it had gotten all over the bed and we had to change the sheets. He was a good sport about it but I was so mortified.

in addition to that I have loose stools ALL THE TIME and I dont know the cause and it puts such a horrible damper on my life. Even if I am feeling good, my diarrhea just makes living a "normal" life seem impossible. I am in college so I have roommates and am very social with friends etc but the fact the I cant control my bowels is so embarrassing!! Sometimes I will avoid going out because I know I am going to have diarrhea and wouldn't want to stink up a friend's bathroom, or going to the bathroom every 20 minutes.

I dont know what to do or where to turn. Every time I wake up with my underwear full of poop I feel horrible. I have to clean myself up, put all my associated clothing in the washer, run the cycle twice just to make sure that all the fecal "stuff" is gone, shower, and I wash my hands at least 3 times after. And even after that I am actually too afraid to go back to sleep because I am fearful that it will happen again. Sometimes I dont even want to go to bed AT ALL at night because I am afraid of defecating myself in my sleep. The only thing that I can really do is take 2 immodium but I know that it is not something that should be taken all the time...and I have loose stool almost every other day it seems.

I really hope someone knows what this could be. My doctor has already tested me for hundreds of food allergies, and it is not some kind of infection because I have given numerous fecal samples over the past 6 months and everything has turned up normal. I also dont think that it is a side effect of one of my medications because I tend to have loose stools on a regular basis even when I stop taking my medicine for a day or two. I have made an appointment with a gastroenterologist for next month and I really hope I can get some answers but I know it is a long process and I dont even know if they will find anything because all of my labs have been normal.

Someone please help me or tell me what to do....I dont even feel like a fully functioning person anymore because of this problem....

Thank you everyone, I am so thankful for this side because otherwise I would have no where else to turn....

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Date Joined Mar 2006
Total Posts : 2608
   Posted 8/24/2008 11:32 AM (GMT -6)   
Misscali, I nearly cried when I read your post. Your poor dear. You are really going through a nightmare. I hope you're making sure you stay hydrated, drink plenty of water and eat healthy food. One thing you can try before you see the gastro, is cut out all wheat products for a week or so. I had been tested for food allergies too, and although nothing significant had shown up, within a week of going gluten-free I felt 100% better. One of the symptoms of Celiac Disease is chronic diarrhea. I'm no doctor, though, and I'm so glad you're going to see a gastro. If he doesn't help, think about going to an infections disease doctor. That may involve travel, but you have to get to the bottom of this.

As embarrassing as it may appear, I'd also consider wearing Depends when I slept. If you wake up every morning with this, it will make your life at least a little easier. And your boyfriend already knows about it so he'll not only understand, but will probably be relieved. My mother wore them and they didn't bother her at all. I also put a large pad under her in case anything got on the bed so it wouldn't leak onto the sheets. It will be a huge time saver and you'll have nothing to wash except for your hands.

If you're one to wear long, loose skirts, you could wear the daytime Depends and no would would know the difference. Make life easy for yourself Misscali.

I pray that you'll find a good doctor who wil get to the bottom of this real soon.

Many many (((((((Hugs)))))))

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Post Edited (PattyLatty) : 8/24/2008 4:21:37 PM (GMT-6)

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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/24/2008 2:18 PM (GMT -6)   
I'm so sorry this is happening. I felt like crying too when I read your post.  Pat gave you excellent advice regarding the Depends underwear, staying hydrated and eating well.
All I can add is that I had that kind of diahrrea before I was diagnosed. I had a sygmoidoscopy to try and find the cause.  I had an inflammed bowel which was causing the D.
When I was in the hospital last summer, I had low levels of Phosphorus, so they gave me suppliments.  HOLY CRAP - literally.  I couldn't control my bowels either.  I ended up using overnight maxi pads.  They worked quite well.  You're not taking extra phosphorus tablets or magnesium are you?  Magnesium will cause diahrrea too.
If your labs have been normal, I'd investigate having a scope of your bowels done.  It could be inflammation. Hard to say.  I sure hope you get the answers quickly.  Sending you hugs.....
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

34 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, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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Date Joined Dec 2006
Total Posts : 2818
   Posted 8/24/2008 5:23 PM (GMT -6)   
Sweetie this isn't embarrasing. This is your body and somthing is attacking it. There is nothing to be embarrassed about. I agree about using somthing like depends and they make those blue pads that are throw away like the ones in the hospital. You could put on the bed. I don't have it to the extent you do but I have had several bout for unknown reasons (possible plaquenil). You're in college this is the last thing you should have to worry about. I am so sorry! I was wondering how long this has been going on. Yes please make sure you drink plenty of fluids. I would at least try what Patty said about thefood. It seems wheat tends to effect a lot of people. besides you have to wait a month to get in. If you find out it doesn't make any difference and you GI suggests it you can tell him you already tried that and have that out of the way. I think it was sweet that you boyfriend is supportive. Sounds like you got a good one.
Keep us informed please
love and prayers
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Regular Member

Date Joined Feb 2007
Total Posts : 154
   Posted 8/24/2008 6:15 PM (GMT -6)   
hey everyone! thank you so much for your replies its made me feel so much better! I think I will try wearing something at night, it would make things a lot easier, I actually have done that once but its hard to predict when I am going to have incontinence so i was kind of wary of wearing a pad every night but I think it is going to be a good idea at least for the next couple days because my bowel movements have been like water!! I am not taking any magnesium or phosphorus, but I suppose it could be the plaquenil because I am on that. Anyways I really really appreciate you guys, I will definitely keep you posted!!

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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/24/2008 6:47 PM (GMT -6)   

I didn't have time to read the replies the others left for you . . . . but make sure you get a referral to a GI doc. You may have an attack on your large intestines. It can cause some mortifying problems like you've described. Do you have any pain? Auto-immune diseases seem to overlap and there are some folks who have lupus and chron's. I don't want to give you another issue to worry about . . . but you should get some medical help to sort this out.

Thanks for sharing. . . and SO sorry you are dealing with this! (((((((((( Misscali )))))))))))


In His Grip

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Co-Moderator - Lupus Forum

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Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 8/24/2008 9:04 PM (GMT -6)   
It's also important to double check your meds - make sure to separate the ones that are taken *with* food from the ones taken *without* food...check drug interactions (link in my signature). Also make sure you aren't taking any with citrus juice, esp. grapefruit juice. I also get problems if I drink too many soft drinks (acidic!!) in a short period of time w/minimal food.

I hope you are able to solve this issue soon, it sounds very very frustrating.

Hang in there, the answer will come.

Lynnwood, Co-Moderator: Lupus Forum
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Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 8/25/2008 10:07 AM (GMT -6)   
Bless your heart Misscali ((((hugs))) I am so sorry you are having to deal with this. The first things that came to my mind while reading your post were Celiac disease (aka gluten sensitivity) and of course lupus attacking your Digestive tract.

I know what you are going through except my accidents always happened when driving to work. It's an awful feeling not being able to hold your BM. I had diarrhea every single day for 3 years. My life revolved around the toliet. I hated to go shopping and when I did go I always looked for the bathroom upon entering the store. Making long trips was completly out of the question for me and I haven't riden in the car with anyone but my husband for years. It improved the most after my rheumy discovered lupus attacks my gi tract in 2005 and started me on Imuran. Now, I still have problems when I flare, etc but it's NOTHING compared to what it used to be.

Have you talked to your rhuemy about this, if not you really should. I know it's embarrassing but it's very important information that could help figure things out.

I'm going to include some webbsites so you can read about Celiac, its one of those diseases' that is about as hard to dx as lupus. I had test after test done from 2002-2004 and they all came back negative, including blood work & biopsies. GI docs thinks Celiac is very rare here in the US and it's often misdiagnosed as IBS. I was finally dx with a stool panel test thru a private lab in TX.

I wish there was something I could do for you. Hang in there and let us know how you are doing. Feel free to ask me more questions, email me privately if you would like to. Take care

<Edited to activate link.>

Post Edited By Moderator (Lynnwood) : 8/25/2008 9:24:03 AM (GMT-6)

Regular Member

Date Joined Nov 2006
Total Posts : 27
   Posted 8/25/2008 2:49 PM (GMT -6)   
Hi Misscali,
Sorry to hear what you are going thru. I had chronic diarhea several times a day for 5 months straight. This came on suddenly one morning after my husband and I returned from having breakfast out. So naturally, I associated it with that but when it didn't let up and I was losing 6#'s a week and my CBC blood values were falling and I became anemic, I was scared "S" less. I had gone to 5 GI people and they only could suggest it be irritable bowel syndrome, which I knew it wasn't. No medicine would help, I wasn't on Plaquenil either at the time, just my regular meds I had taken for some time. I have a condition called APS which is rather common in Lupus patients. This makes my blood have a tendency to clot; I take Coumedin for this. After having a doppler of the gi tract, a colonoscopy and an endoscopy, they had found that the blood supply in my artery to my GI tract was practically closed off and ischemia was setting in the intestines and causing the "D". I had a 5 hr operation in January for a bypass inst. to the s.mess.artery supplying the bowels and within 5 days...before I left the hospital, after 5 months of diarhea, my bms returned to normal and have been fine every since. I am told this is a diagnosis that is often missed but it was my Vascular Dr. who pointed me in the right direction. I was told I wouldn't be here today hadn't they found the problem when they did.

I hope you find out soon, don't give up, pursue it until they have found the problem. It is an awful problem to have to put up with. They will find the reason soon. Please keep us posted.

You have our hugs and prayers.

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 8/31/2008 10:03 AM (GMT -6)   
I wake up and I find that I have had a bowel movement while I was sleeping...and it is all over me
It is always loose stools obviously but I dont know how to prevent it and I dont know the cause. One time in the middle of the night I had to wake up my boyfriend because it had gotten all over the bed and we had to change the sheets. He was a good sport about it but I was so mortified.

I have had the same thing almost.  I woke up the next morning and found that I had been in the bathroom at some point in the night.  feces on the walls the commode, the floor, and my clothes. 
I am taking promethazine as needed, but sometimes it does not work either.  I am hoping that the plaquinil is the cause of some of it.  Had diarhea before and the script was given to me to take as needed.  But this diarhea that I think plaquinil causes, is uncontrollable.  I can't hold it back.  So I went a few days ago and bought some of the depends things, pullups for adults.  this way the smell is not so bad, the mess is not so bad.  Just have to throw away the diaper things.
Hope this helps
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