sick of being sick

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ryleigh
Regular Member


Date Joined Dec 2005
Total Posts : 251
   Posted 12/17/2005 12:15 AM (GMT -7)   
Hello,  I have had IBS for 10 years...  I can only go about 5 miles away from my house without freaking out that I am going to have an attack...  I am sick of it!!!!!!   I have 2 kids and can't do anything with them because of this..   I have tried every medication potion acupuncture diet nothing helps.   I have pain everyday of my life....  I have had lower upper gi colonoscopy all come back normal...  I had a hysterectomy 5 years ago because they thought that was the problem.  I still have pain..  They say I have scar tissue.  So what do I do for that.  More surgery??  Won't that cause more scar tissue.  The doctors all look at me like I am crazy..  I am on disability because I can not work a normal job...  I just want to be normal again.  I used to be normal 10 years ago.. Could go anywhere and do anything without a problem.  Now I am house bound almost....  Everyday I wake up an think how much pain am I going to have today??  THere are times I think this is it I am dying and want to call 911..  But I don't because I know what they are going to do.   More tests!!!  I have had them all.   Sorry to sound like a crazy person but I can't take it anymore...  I tried zoloft that was a joke it made me sicker...   Just want some people to talk to that understand this..  Thanks for listening..   mad

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 12/17/2005 12:38 PM (GMT -7)   
Hi ryleigh,
Welcome to HealingWell! :-)
I'm sorry to hear about your struggles with IBS. Have you spoken to your doctor about trying something other than Zoloft? Usually people will try at least a couple antidepressants before they find one that works for them. What about an antispasmodic? Are you taking any for the pain? I would go back to your doc and discuss your frustrations. Ask to try other meds.
Again, I'm sorry about this hard time you are going through. We are all here to support each other; I hope you will find what you are looking for here.
Take care.
Co-Moderator for the IBS Forum
 
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ryleigh
Regular Member


Date Joined Dec 2005
Total Posts : 251
   Posted 12/17/2005 3:30 PM (GMT -7)   
I have tried every drug there is.   They all make me worse..   I was having a really bad day yesterday..   Sorry for complaining so much...   I just want to me normal again..  Just be able to go out and not worry if I will get pain or where the nearest bathroom is.   Does anyone have alot of pain...   I have pain so bad I almost pass out...    That does not seem normal to me.  Every doctor I go to says you have IBS  you just have to live with it.   Sometimes I wish it was something worse so people would say oh you have chrons or something that sounds worse than ibs.   People think ibs you can go out no big deal.   All of you know that is not true.   Thanks for the reply.    Ryleigh confused

Ryleigh


joci
Regular Member


Date Joined Dec 2005
Total Posts : 93
   Posted 12/17/2005 5:55 PM (GMT -7)   
hi and welcome, i have ibs-d and as much as i didnt wanna go back on elavil i did cuz it helps along with calcium carbonate 600 mg like 3 times a day. im also taking cholestyramine, its a drink 2 times a day it totally helps. ive tried lotronex which only worked with zoloft but lke u the zoloft made me feel like a zombie!! i tried lomotil- helped but couldnt sleep, im very sensitive 2 meds!!! u should try some of these, also librix i think its called 4 d. get every test u should to make sure its only ibs. sometimes i wish it was something else just cuz there seems 2 be more treatment! 4 ibs they tried 2 give me immodium, pepto bismol a bunch a crap 4 like a yr ive been going through this 4 4 yrs but the combo that helped the most is elavil with cholestyramine- thats a cholesterol med with a constipating effect. slso try lactose pills incase ur lactose intolerence which most people r if they got ibs!!! let me know how it goes. good luck
love to hear from u.
                           
                          joci
 
28 yr old from mass. i got fibro, migraines, anxiety scholiosis and ibs-d.i also have difficulties with tollerating meds! and having major chronic fatigue


7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 12/17/2005 6:45 PM (GMT -7)   
Ryleigh, I think you are right.... people do think IBS is no big deal. They just don't get it. Just today my mom told me "you can't let IBS rule your life." I almost wanted to shout back 'don't you think I know this!' The problem is that we say for it not to run our lives, but it does. We are constantly worried about finding the nearest restroom "just in case." We are scared of leaving the house and traveling long distances. This is our reality, not just a state of mind. We don't have the luxury of not letting it rule our lives because it is a MAJOR part of our lives. There is no fixing it... yet.
I really wish I had some advice or words of wisdom, but I don't. I'm just as lost when it comes to IBS as you are.
(((BIG HUGS)))
Co-Moderator for the IBS Forum
 
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softy
Veteran Member


Date Joined Jun 2004
Total Posts : 798
   Posted 12/18/2005 1:00 PM (GMT -7)   
Hi Ryleigh. I know the feeling. I too had a hysterectomy 3 years ago and have been in pain ever since. They are calling it scar tissue, IBS or functional abdominal pain depending on which dr. is doing the diagnosing. I have also been thoroughly tested for crohn's and had ever test there is. My biggest complaint is the severe pain I am in at times. I am taking Celexa to help deal with the pain and it has helped me tremendously. Hope you find something that helps :-)
Take care, Softy
 


ryleigh
Regular Member


Date Joined Dec 2005
Total Posts : 251
   Posted 12/18/2005 6:28 PM (GMT -7)   
Thanks so much for all of your replies.   You all make me feel so welcome and not alone.   Hey softy we have a lot in common.   Would love to talk with you more about your scar tissue and other abd pain.   Please email me at sully03@bellsouth.net if you want to talk more.   I just want to be normal again.   THanks everyone again.    Ryleigh.....

Ryleigh


Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 12/19/2005 9:28 AM (GMT -7)   
Sarita is probably the best person on here to talk about having pain and debilitating sickness. I think she's worse than anyone else (some award to have, huh?), and like you, they can't find anything wrong with her. She gets so bad she has to go to the ER on a fairly regular basis to get pain meds and IV fluids (she has super bad diarrhea). She's been tested for parasites and has even been to the Mayo Clinic with no success. Right now, though, I think she's doing better, so you may want to look up her posts and see what she's doing to help. You may also want to pop over to the Crohn's board for advice since Crohnnies, on average, have much worse symptoms than IBSers, and they may have some advice for dealing with the pain, medicine you can take, etc.

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 12/19/2005 12:32 PM (GMT -7)   

Hey Ryleigh, welcome to the board...I haven't been posting as much lately for a few reasons, the most exciting of which is that I think I'm headed into a remission.  For about a year I was pretty ill; terrible diarrhea 10-25x/day, sometimes with blood, severe abdominal pain, fevers, weight loss of 25 pounds, constant mouth sores, etc.  Had a lot of tests done, several of which were "abnormal" (small bowel series, upper endoscopy, fecal occult blood and leukocytes) but was never told what was causing the abnormalities.  Docs thought it was Crohn's disease but my colonoscopies and capsule studies were negative for evidence of IBD, so they just sat there scratchin' their heads.  They did concede that IBD can be hard to find and sometimes it can take a while to be properly diagnosed.  They did try their hardest to minimize my symptoms.

I've tried a lot of things: anti-diarrheals (everything from Imodium to Lomotil to cholestyramine), fiber therapy, probiotics, diet modulation, etc. with minimal or inconsistent success.  I've been in the ER on about 6-7 occasions for dehydration or severe abdominal pain.  Had my diseased gallbladder out over the summer which helped the nausea and URQ pain go away but unfortunately not the rest of it. 

At this point, though, I'm going to the bathroom only 3-5x/day, haven't had bad pain or bleeding in about six weeks, haven't lost any more weight in a couple of months, and generally feel like maybe things are looking up.  My PCP said that if it is Crohn's, I could be going into a spontaneous remission, which is just fine with me.  Just have to hang in there until things either get better or worse, is the way I look at it.

It is definitely tough to keep a good attitude and I've only been dealing with this for a year.  I'm glad you found us here, but I'm sorry you too have been suffering.  There is a wealth of information here that hopefully will be helpful for you!


katydid1994
Veteran Member


Date Joined Oct 2004
Total Posts : 504
   Posted 12/19/2005 1:06 PM (GMT -7)   
Hello,
 
I got teary reading your post, I wish there was a hug icon on here.
 
I'm so utterly sick of it too!  I have also had just about every dang test there is and the only thing that ever showed up was gastritis in my stomach lining, irritation in my colon and a calprotectin level of 107.
 
I haven't got one straight answer either.  I have suffered since I was about 13, so thats 16 years now.  It got increasingly worse as I aged.  I started really seeking treatment in 1999.  And I'm still here, still with the same complaints and additional ones.
 
I also get a bout of pain in my LLQ almost every day and it ususally radiates to my navel area or nearby.  I was so sick friday I was at my wits end.  It felt like I had a knife stabbed in me under my navel and nasty Diarrhea.  I called in friday in a desperate panic and then eventually drug myself into work, in case I was worse on another day.
 
I am so so tired of family and bosses and coworkers and anyone who just doesn't get it.  They all seem to think there should be some magic pill to wipe it all away.
 
They understand Diarrhea, but they have no concept of intolerant foods, pain, bile, nausea, any of it.  Sometimes I just say its a virus so they'll not pester me. 

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 12/19/2005 1:53 PM (GMT -7)   
<<They all seem to think there should be some magic pill to wipe it all away.>>

There should be! If only someone would invent it. I guess it's not as glamorous as AIDS, cancer or weight-loss research. Never mind more people have IBS than most other high-profile diseases.

ryleigh
Regular Member


Date Joined Dec 2005
Total Posts : 251
   Posted 12/19/2005 2:08 PM (GMT -7)   
Thanks everyone for replying..   Kadydid I did cry when I read your post.   I used to go to work and was sick every day..  I am on disability now.   Can you believe it that actually approved me because I have IBS....   I pray everyday please please let me have a good day.   No more pain or fear...  I also get really bad LLQ so bad the other night I almost called 911..   But then I thought ok if I call 911 what will they do.   Well they will come get me and I will lay on a cold hard gurney for hours in pain before they do anything.   Then they will poke and prode me and make me drink some terrible stuff do the same darn tests again and find nothing.  So I thought as I lay shaking on the floor as my husband and two kids sleep,  do I really want to disrupt my house and call 911 or lay in my house untill I feel better  I chose the later one..  Sometimes I really think this is it I am not going to make it thru this and I am going to die.   The only thing that really keeps me going is my two beautiful kids.   They are 2 and 6 both girls and both adopted..   I could not have kids did all the fertility stuff that was fun and then had a hysterectomy 5 years ago because of all the pain.   All I want is a normal life even semi normal.   If I could have one day without pain or fear I would be so thankful to god....  Thank you all for your support I don't feel alone anymore.  I was getting to be at my wits end...   Noone understands unless they have it...   Ryleigh

Ryleigh


bunnybabe
Regular Member


Date Joined Sep 2005
Total Posts : 263
   Posted 12/19/2005 3:56 PM (GMT -7)   
oh, girl... i hear ya... actually i think we all do, sadly...
i am glad you found your way to this forum...
--bunny
what would you attempt to do if you knew you could not fail?

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