How much longer can I last like this?

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shelly1979
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/21/2006 12:31 PM (GMT -7)   
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.

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 6/21/2006 12:52 PM (GMT -7)   
(((Shelly)))
I am so sorry you are having such difficulties.
I understand all too well how D, weight loss & hair loss has disrupted your life.  Mine too!!  Months and months ago I posted about hair loss.  I heard that edible aloe vera helps (BEWARE: it causes D) and topical Rosemary oil.  The rosemary oil stinks but I think it may have helped A LITTLE (better than nothing!).  I also use aloe vera shampoo and rosemary shampoo.  No conditioner!!!  I take vitamins too.  My hair still falls out, but not AS much.  I didn't try the edible aloe because I'm scared of D.
As for your D... I'm sure you've heard about calcium.  Did you try it?  It really should work.  Did you try it for at least a month?  What about imodium - does your doc say it's OK?  Are you on probiotics?
As for the weightloss... I can't help you.  I eat small meals and never stuff myself.  That's how I keep from getting sick - but it's also how I stay skinny.  I also got off birth control so that made me lose about 10-15 lbs.  Are you on it?  Maybe you could get ON if you're not.  tongue    Just an idea.
Best of luck to you!  I hope you feel better.  You can always come here to vent if you need to.  I do!  :-)
Co-Moderator for the IBS Forum
 
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Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 6/21/2006 1:00 PM (GMT -7)   

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%. 


shelly1979
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/21/2006 1:15 PM (GMT -7)   
Thanks for your kind words...I really appreciate it.
 
I'm just so frustrated and I'm paying such close attention to my body that maybe I'm paying TOO much attention to it and trying to find the littlest thing wrong with me.  If I have the slightest little pain in my abdomen, I run with the idea that I have cancer or something like that.  I can concentrate on anything but mu body and when I'll poop next.  I have diarrhea / loose stols 100% of the time....for over 3 months now.
 
I forgot to mention that I was on the birth control pill for 2 years and went off of it this past February.  I developed the "diarrhea / loose stool problem" about a month after going off of the birth control pill.  I started the birth control pill again last month.  No change yet.
 
I've tried the high fiber diet as suggested by my GI specialist.  He said even for people with diarrhea, the high fiber will "bulk" the stools up.  It does somewhat, but not a lot, and I've noticed a lot more mucus in my stools when I use the metamucil wafers (high fiber supplement.
 
I tried the Caltrate with D for a few days but got discouraged when I didn't see it helping so I discontinued.  (I know I'm impatient)  Does it take some time to work?
 
My doc put me on Elavil (only about 10mg, which is a low dose).  It makes me SOOOO tired. My Dr. said that it may take a few weeks to work.  Is this true?  Will the "tiredness" side effect of this drug go away too as my body gets used to Elavil?  I can't be a zombie all Summer.
 
I'm at my wits end.  I just want my life back.  I want to be happy again, like I normally am.  I have acne now too...my mom says it's frm stress and maybe the birth control pill.  Maybe my hormones are all screwed up.  Can functional diarrhea OR IBS-D be related to hormones?
 
So many questions so little time. 
 
All I need now is some HOPE. 
 
 
 

JJur
Regular Member


Date Joined Jun 2006
Total Posts : 37
   Posted 6/21/2006 1:24 PM (GMT -7)   
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

sami-jo
Regular Member


Date Joined Apr 2006
Total Posts : 326
   Posted 6/22/2006 5:30 AM (GMT -7)   
I don't know how much more of this I can take, either!!!
I can't stand it much more.
There are times (like now) when I feel so bad I could just curl up and die.
But then I remember that my family needs me.
I think for a day I might be getting better and then I wake up with this again.
My therapist told me yesterday that alot of anxiety prone people (alot of her patients) have stomach & bowel troubles. I want to just believe that nothing is "really" wrong with me, so why cant I?
I just don't understand how someone with "normal" toilet habits goes to diarrhea all the time seemingly overnight.
I'm taking the Caltrate, eating rice & bananas, taking small dose of ativan (.75mg per day) for my nerves which are shot over this sh- crap.
I cry everyday. My husband is sick of me, too. I don't know where to turn next.
thanks for the vent.
sami

ItalianBella
Regular Member


Date Joined Jun 2006
Total Posts : 38
   Posted 6/22/2006 5:45 AM (GMT -7)   

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...


shelly1979
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/22/2006 5:46 AM (GMT -7)   

How does everybody come to accept what the Dr. tells you...for example, "We can't find anything wrong with your 100 tests that we've done on you, so you have functional diarrhea (IBS-D)." 

Does anybody ever think that the Dr. just hasn't checked everything?  It has to be SOMETHING causing this diarrhea / loose stools everyday. Right?  How do you accept what the Dr. says?  That's what I'm having a hard time doing.  I was perfectly normal until March 15...then I've had this diarrhea problem ever since, without 1 days break.  I'm just so tired over all of this.  I am frustrated, mad, and sad all at the same time.  

It's effecting my entire life because I feel so sick.  I'm tired, no appetite, lost weight, face is broke out now, foggy headed (most likely due to the elavil the Doc put me on), irritable, crying every day, scared that there is something seriously wrong with me, even though the tests say I'm okay....I just don't know how much more I can take of this. 


sami-jo
Regular Member


Date Joined Apr 2006
Total Posts : 326
   Posted 6/22/2006 5:58 AM (GMT -7)   
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?

ryleigh
Regular Member


Date Joined Dec 2005
Total Posts : 251
   Posted 6/22/2006 7:27 AM (GMT -7)   
Shelly1979,    I totally understand you!!!  I have had this crap for 10 years..  I used to be normal do anything go anywhere.  Then about 10 years ago I started to try to get pregnant..  It was down hill from there..  I finally had a hysterectomy 5 years ago..  That did not help..  I have had every test tried every pill and potion and am still sick..  I have to small kids both adopted and have a hard time taking care of them..  I feel like a failure..  But I go on because of my kids..  My issue is alot of pain all of the time...  I was dx with endometriosis before I got the hysterectomy..  I thought that would help..  Now I find out even with the hysterectomy you can still have endo on your bowels!!!  What the hell!!!..  Well I am moving from Forida to Ohio in a couple of weeks.  I am going to go the the Cleveland Clinic and try to find some help...  I feel for you!!!!  I understand..  If you want to email me direct you can..  Sully03@bellsouth.net...  Take care....

Ryleigh


sami-jo
Regular Member


Date Joined Apr 2006
Total Posts : 326
   Posted 6/22/2006 11:10 AM (GMT -7)   
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!

ryleigh
Regular Member


Date Joined Dec 2005
Total Posts : 251
   Posted 6/22/2006 11:51 AM (GMT -7)   
Samijo,   No way!!  That is to weird..  Was it hard to get into Cleveland Clinic???  Where to do live in Ohio???  Where is Florida??  You can email if you want at my person email address..  Sully03@bellsouth.net..  Take Care...

Ryleigh


Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 6/22/2006 8:14 PM (GMT -7)   
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. confused

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 6/23/2006 9:34 AM (GMT -7)   

Ugh... Rough morning.  I haven't felt this bad in a long time.  It had been about a month that I didn't have the big D.  I think I got over confident because yesterday I had pizza and soda.  skull    I'm super into the World Cup and watched it with everyone else at Round Table.  Bad move!  I'm paying for it.  Next game I'm bringing soup!

I'm scared to eat now... I still sort of have cramps and my stomach is in knots.  Sucks to work like this.  sad


Co-Moderator for the IBS Forum
 
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Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 6/23/2006 12:04 PM (GMT -7)   
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.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/23/2006 3:36 PM (GMT -7)   
Aww Lil... I'm sorry. Hard to say when this darn thing will creep up on you. I am at times when I can eat pizza and soda with no problems (when my IBS or UC is not causing problems). Hope you can relax with a heating pad tonight. Hoping you feel better soon.
Hugs, Des
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, UC 2005, Sjogren's 2006
Meds: Sulfazine EC 1000mg, Mesalamine Enemas, Chlorzoxazone 500mg, Naprosyn 500mg, Symax SL .125mg, Protonix 40mg, Xanax XR 2mg, Miralax 17g, Supplements
 
 
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