How much longer can I last like this?

Okay, I'm having a bad day.  I've posted on this board a number of times, but I am really coming to the end of my rope with this "diarrhea problem".  It has officially taken over my life.  It's effecting my mood, my outlook on life, my marriage, etc.  I've been to GI specialist, regular Dr., social worker, etc.  Nothing is helping. I'm sick of trying something that may help and nothing does.  I've lost weight and I look awful.  I'm losing my hair too, so just taking a simple shower causes panic for me.  I can't take much more of this!!!

 

The GI specialist says I have "functional diarrhea".  There's nothing "functional" about it.  It's made my once happy life, totally disfunctional.  I cry everyday and worry that there is a CAUSE for this diarrhea / loose stools to happen everyday for the past 3 months and still going strong.  I've talked myself into thinking that I have cancer or other kind of bad disease.  Although ALL blood tests, stool cultures, colonoscopy, EGD, small bowel series x-rays, upper GI, hemmocult tests, blood tests, 24 hour urine tests and a number of stool cultures have come out normal.

 

The diarrhea/loose stools does not wake me up at night, but it hits me after being awake for 5 minutes in the morning.  I've had no fevers and no vomiting.  I have no appetite.  Maybe this is because everything I eat comes out diarrhea / loose stools.  I have quite a bit of mucus in my stools too.  Is this normal of IBS-D and functional diarrhea?

 

I'm sorry to let it all out like this, but I'm sick of the horrible worrying and crying that this has cause be.  It's like it has stolen my life...I just want it back.

 

Maybe you can help me.

Shelly, it's understandable how you feel.  Rest assured that with all those tests you've had done - and the fact that they are all normal - it is likely Irritable Bowel Syndrome.  This does not take away from the fact that you are suffering, but hopefully it will give you peace of mind that they haven't missed anything major.

I remember about a year ago when I went through all those tests myself.  I had diarrhea sometimes up to 30x/day; I lost 25 pounds; the pain would hit me like a ton of bricks right in the gut; I had fevers up to 101 daily with no explanation.  Sometimes they would find abnormalities in the test results, but they couldn't attribute the abnormalities to any specific illness, so they kind of threw their hands up.  I went through months and months of endless tests and docs' visits.  Sitting on the toilet half the day and night.  I hated it all.  I was miserable.  Then I decided - I cannot keep being this miserable.  I have to move on with my life.

For a while, moving on with my life meant popping Imodium, Tylenol, and anti-spasmodics every day; it was the only way I could continue working and functioning.  I drank Ensure and bananas and whatever else felt good.  I'd invite my friends over for movie night and they'd drink beer and giggle with me about my bathroom trips.  When I felt really sick I'd buy myself a bunch of stupid magazines and rent "Airplane" and "The Goonies" and veg out on my couch with a heating pad, and sometimes I'd cry and sometimes I'd call up old friends to talk about something, anything but my illness.  You have to find some way to approach your situation with as much lightheartedness as possible.

You have to take time to breathe in, accept this time in your life (you have to!  There is no other choice) and do what you can to face it in the healthiest way possible.  You have help here.  You will get through this!

By the way...I was treated by a nurse practitioner with a course of anti-parasitic drugs late in my illness (about three months ago) and so far, I have been feeling infinitely better.  The symptoms slowly - very slowly, over the course of weeks/months - started to improve once I found a regimen of meds/supplements/foods that worked for me, and then the Flagyl worked its miracle.  Now I have diarrhea 20% of the time instead of 95% of the time, and that is fine with me!  I can handle the 20%. 

I completely understand...i was diagnosed with UC in 2004....I haven't had a solid bowel since.....it completely changed my life, i had to drop competitive sports, and so many of the other things that i loved because i was just in pain or had to find the bathroom, lomotil cut my times in the bathroom from 20 to 10 a day. i still dont have a hard stool, but atleast i get some more time to myself. I dont know how many times "i dont know how much more of this i can take" has come out of my mouth, but it was definatly a lot. I just take it one day at a time and say...i guess it could be worse.

-joe

Hey guys. i know exactlyyy how you all feel..i used to have such an active social life, now i spend most of the time at home. I go ot work, come home. work,come home...boringgggg. i go out maybeee once a week..Im 25 so i shoudl be going out alot more...My mind constantly thinks of my stomach. I think to myself,what guyyy is gonna want a gf with a stuffed up bowelll and a nervous system that is absolutly crap and wont leave the house...ahhh...im suprised im not more depressed actually.and yeh i can laugh about it sometimes. but when i really think about it, it sucks.am i destined to be at home for hte rest of my life? and singleeeee...thats a scary thought...even going to the movies for me is hard. i get stressed out cos thats where i had one of my first episodes of feeling sick and having Dioreha...yuk.. so now i hate the movies...its like a vicious cycle and i hateee it....

wish things could be alot easier, like 2 yrs ago when i didnt have irritable bowel...

I don't get it either. I feel like there must be SOMETHING wrong. That something must have been missed.

I haven't had one day's break from the D, either. Sometimes I think things are looking a little more solid only to have it be a cruel joke and the next day is worse again.

I was perfectly normal until Feb. 1. I've stopped losing weight, I think cause the ativan makes me want to eat. But did lose 20 pounds from Feb to April.

All the tests are negative. Colonoscopy, upper GI, smbowel follow thru, blood tests, stool samples, CT's, etc.

my hair is falling out, too. Soon, I will be a bald, pooping skeleton. ha ha ha.

Shelly- do you think the elavil is helping any? is that all you are taking?

italianbella- did you just "get" this all of a sudden 2 years ago and it's been nonstop ever since? did something happen in your life 2 years ago that made you extra anxious which may have been a trigger?

Hey ryleigh - I just went to Cleveland Clinic for a different problem (an incidental adenoma they found on my adrenal gland when I had a CT scan for the diarrhea) found out the adenoma is benign- but wanted to say that the Cleveland Clinic was a great experience and I am also thinking about going back there for the so-called IBS.  Anyways, even more coincidentally, I moved here from Florida, too!

It really is hard to understand that there is "no  reason" that is definable. When I asked my Dr. "well, what changed that I have this now" he just said "you have probably always had it and something pushed it over the edge, we just don't know why. we all keep looking for an answer and I really don't think they are trying to "con" us, they just don't know as it isn't a "physiological" problem they can point to. I am so lucky that I dont have what you guys have and I really admire all of you so much to keep your sanity during all this. I think it would put me over the edge.

Sorry you're feeling bad, Lil. :-(

The pizza and coke will always get you; so... hard... to... resist. I'm having problems here at work because people keep bringing sweets in and I'm a sucker for them. I had a doughnut yesterday morning. I've been resisting them, but these were not the usual greasy Krispy Kremes that I've been kind of turned off on: these were Hebrew National that had such a good smell to them, I couldn't resist. I tried just have three bites of one, but I kept burping it up all morning and unlike most foods in that situation, it tasted even better the second time around and made me want more. I finally broke down and had all of it, but I didn't have my soup for lunch--just salad--so I figure I made up for it calorie-wise.

Man, just talking about it makes me want to go finish that last one off, lol. But, anyways, moral to the story is sometimes when you can't beat temptation, you just have to make up for it. Keep it to one bad-for-you-thing a day (coke or pizza, not both) and then eat light and bland at other meals to make up. I found that sometimes worked back when I was having gall bladder attacks. Sometimes. After all, guts can be quick to anger and slow to be pacified. The other thing you can try to do is eat before you get in that situation and so, hopefully, you'll be full enough you won't want anything or will only eat a slice instead of making it a full meal. But I'm sure you know all of these old tricks. I know from personal experience that they can be hard to put into practice sometimes, especially when your weakness is winking at you from less than arm's length away.