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Posted 5/3/2006 5:18 AM (GMT -7)
Hi Everyone,  I had a really bad night..   Up since 3am with severe upper chest pain...  I am so sick of this crap... I was ready to call 911 but then I thought what the hell are they going to do but take me to the hospital do a bunch of tests and send me home saying you have IBS..  This can't be just IBS...  I have pain everyday of my life..  My husband gets so upset and rightfully so his life is on hold because of me..  This morning he had to take the kids to school..  That is my job..  I can't even do that right...   Sometimes I think when is this going to end..  Do I need to end it myself????  The only reason I don't is because of my kids...  I am going to call the doctor today and say..  That is it!!!!!!!!!!!!!!!!!  I need help...  I want every darn test done all at once..   Please find something wrong with me....  Sorry for the rant...  I know you guys understand...  Is anyone dibilitated as bad as me???? I sure hope not..  I would not wish this on my worst enemy....   Thanks for listening...

Ryleigh

Posted 5/3/2006 6:47 AM (GMT -7)
Sorry Ryleigh that you are in so much pain. I really hope that the doctors listen to you and are able to help you. IBS can be very debilatating for lots of people but whether you have that or something else you are entitled to try and find something good treatment or that will at least help subside your symptoms. Good luck with your appointment and stay strong in all of this.
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
 
 
Please help Healing Well continue to help others by donating  https://www.healingwell.com/donate
 

Posted 5/3/2006 8:11 AM (GMT -7)
Go in there and kick butt and take names!

Walk in firmly, have a seat and pull out your list and read off all of the tests you want done and the order you want them done in. If the doctor starts to object you point your finger at him and say, "Listen here, bub. I'm not putting up with this crap anymore. I can't sleep at night for the pain. I can't drive my kids to school because I can't get out of bed. This is beginning to wear on my marriage and I have absolutely no quality of life. None. If I was a cancer patient, you'd be trying everything to find a cure for me and to make me as comfortable as possible; you're not going to blow me off because you think that constant dibilitating pain and being on the toliet 14 hours a day isn't as bad as having cancer. I've seen people with cancer out having a better time than I'm having. So you're going to do all these tests and we're going to come up with an answer as to why I'm like this and we're going to come up with a way to ease my pain and my trips to the bathroom, even if that means all sorts of prescription drugs or trips to a holistic healer; we're going to explore all the options. Becauase I'm sure as heck not going to go back home and lay down and "deal with it." You wouldn't lay down and just deal with it if your balls were in a vice grip all the time, would you? How do you think I feel having severe pain like that in my stomach all the time and haven't even been given any medicine to relieve it? Don't even say "IBS" in my presence; don't even think it. It's just a term doctors use to write off their patients and excuse themselves from treating them. There may be no cure, but there sure as heck is some treatment and we're going to find it."

Or something to that effect. I mean you (and your insurance) are paying these facilities, these doctors, to treat you, not to tell you you have IBS and to shove you out the door without even a pain pill. If you found out your electrician had wired your house backwards, you'd sure be up-in-arms about it and demand that he come back and fix it. You should demand that your doctor fix you; that's what he's there to do. Yes, not every disease has a fix. But there are ways to make it more bearable so that you can live with it. There's no reason in the world to send someone home to live in agony without giving them something to help relieve the pain and other problems. Like I said, if you had just about any life-long and dibilitating disease, they would be bending over backwards trying to help. Why do people think that spending hours on the toilet a day is no big deal? How much do they think they would accomplish if they had to spend hours a day on the toilet?

That's why we need people like Sarita--people like us, in other words--to become doctors so we will at least be greeted with compassion and understanding and not just dimissed as being a complainer or a crazy person.

I sure hope you can get some relief, Ryleigh. It makes me angry to see (hear) people in pain and no one will help them. :-(
Posted 5/3/2006 8:25 AM (GMT -7)

I feel bad for you too, Ryleigh.  It isn't fair, not one bit.  How often do you get that kind of pain?  Do you have anything you can take for it?  Once every 3-4 months or so I'll be hit out of the blue with a monster pain in my upper abdomen that lasts several hours and usually lands me in the ER for IV pain meds.  It's unlike anything I've ever felt in my life, not even the ruptured appendix I experienced when I was younger.  My nurse practitioner said that even though I have oral pain meds, they may not do the trick and the ER may be the only option for those times.  You should definitely tell your doctor about that kind of pain - call him in the middle of the night if you have to, they have an on-call service, surely.

Don't give up.  I feel your frustration acutely but I absolutely promise it will get better.  IBS should not ruin someone's life.  You might think about going to a motility/functional GI disorders clinic - there are several - to get a specialist's opinion.

Posted 5/3/2006 7:17 PM (GMT -7)
Keriamon,  Thanks so much!!!  I copied your post and am going to bring it with me to the doctor..  You really make me laugh...  I just don't get how doctors can see how deblitating this is and do nothing..  Maybe they really don't know what to do..  I am going to request a endoscopy and a small bowel study...  Then I want them to open me up and look inside and see if there is a lot of scar tissue wraped around my organs..  Something has to be there to give me so much pain every darn day of my life...  THanks again to all of you...  You are my only people who get it...  I pray for each and everyone of you that you find good health..  

Ryleigh

Posted 5/3/2006 8:27 PM (GMT -7)

devil  Hey keriamon, I need you to come to ky & go to doc with me!!!!    That's my next step.               

     Ryleigh, sorry for your pain. Just remember your family needs you. 5yrs ago I was told I had IBS, but no one explained it to me , instead they wanted to put me on anti-depressants, that did not work .I finally got fed up with Doctors acting like I was crazy & stopped going! Well 5yrs have passed with no problems, I thought it was gone, but somewhere in the back of my mind I had this fear! I'm in worse shape than I ever could have imagined. I have pain every day,Ihave not worked for months & I'm putting us in dept! My husband was real sympathetic at first but he's getting tired of it. I try not to let this get me down. The last thing I need is something else to stress over! I do believe my life style has contributed to this . My husband is a truck driver, home only on weekends,sometimes. I have no family around, they are over 400 miles away. his family thinks I just need anti-depressants! It's like I told him I sure do have alot wrong with me to just be on anti-depressants!          

Posted 5/4/2006 4:58 AM (GMT -7)
Kyhurst,   You sound alot like me...  Would love to chat..  If you want to email me you can at sully03@bellsouth.net...  THanks  Again..

Ryleigh

Posted 5/4/2006 10:26 AM (GMT -7)
Wow, well said Keriamon... what a great patient's advocate you'd make.

For years I was told I had IBS-C...last week after 7 months of extensive testing, I was diagnosed with Crohn's. Not saying that's your issue, but once you take charge of your health (like I did), it's surprising what will be accomplished. Of course, it took me years to get up the nerve to do it and I wish it hadn't.

Take charge, be assertive and demand to be a partner with your doctor(s) in managing and coping with your health issues. Hey, it's your body and only you know what's going on, right?

Good luck.
Sherree

My "Trifecta" - CD, AS & RA...

Posted 5/4/2006 7:34 PM (GMT -7)
Hey Star,  Thanks for the reply..   What tests did you have done????  I am going to the Doctor on Tuesday with a list of tests I want done..  I have already had a colonoscopy and they say that was fine..  Now I am asking for an endoscopy and a small bowel test with a camera..  What else should I ask for..  I have had this crap for ten years.   I even got a hysterectomy thinking that was the problem..  Now I don't think it was..  That is sad..  I had a major surgery preventing me from having kids and that was not it... PLease respond... Thanks so much...

Ryleigh

Posted 5/5/2006 11:57 AM (GMT -7)
Hi Ryleigh.  I know exactly how you feel.  I missed my son's band concert last night because I have had nonstop D for two days.  D takes away all your strength and limits your life so much.   It can make you feel like you are a bad parent, but you are not.  You are just doing the best you can with a condition you can not control.  Good luck 
Posted 5/5/2006 7:26 PM (GMT -7)
Hey Cooper,   Thanks for the reply...  I missed my daughters baseball game today..  I get so angry with  myself...  I want so bad to be there for these things..  I can't get these years back with my kids...  They need to find a cure for this..   I don't think people really know how bad it is for some of us... THanks everyone for your replies...  This website really helps me go on...

Ryleigh

Posted 5/5/2006 7:52 PM (GMT -7)
I can only go to my son's baseball games if its at a place that I know has restrooms in a building nearby and only if I can sit in shade (because of my meds). If his games are in open fields only, I can't go. It's a shame because I feel bad not only for him but that I'm missing out on these things. My hubby and son both tell me that its okay and that they understand but deep down I do sense their disapointment. Its very sad and I know how you feel. Basketball season is great cause at least I know I'm inside and their are restrooms where the games are.
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
 
 
Please help Healing Well continue to help others by donating  https://www.healingwell.com/donate
 

Posted 5/6/2006 5:22 AM (GMT -7)
Dbab,  Thanks for that...  Even though they say the understand I can still see the dissapointment in her face..  Next Thursday is a mothers day tea at her school...  It is at 815am...  Which is the worst time for me and my IBS...  She is 7 yrs old...  I have to go... I have been to these things before and if you are a kid and your mom is not there it is so sad..  All the other mothers are like nice mother she can't even show up for her kid...  I think to myself..  Hey you don't know why she is not here...  I never judge..  You never know someone else's situation...  Thanks again...

Ryleigh

Posted 5/13/2006 10:30 AM (GMT -7)
Hi Ryleigh,
How did your daughter's tea go? I hope you were able to go and make it through OK. :-)
On days I have plans that I absolutely cannot miss, I take an Imodium just in case. It holds back the D and calms my nerves because I won't be constantly worrying about a bathroom.
I hope you had a fabulous time!
Co-Moderator for the IBS Forum
 
Please donate to help HealingWell continue to help us..... www.healingwell.com/donate

Posted 5/13/2006 6:29 PM (GMT -7)
Ryleigh, I am concerned when you talk about upper chest pain. I know IBS has different syptoms for different people but you are not saying upper abdominal pain but upper chest pain. Is it around you esophagous? Why don't you add a CT scan with contrast of abdomen and pelvic to your list of tests as long as you have a list. They just don't open people up for exploratory surgery much anymore because most things will show on a CT scan or ultrasound/Hida scan and those things. Hopefully the endo will help and show something and they will do all the testing for bacterias cause they don't always test for everything like Gluten, giardia, etc. What tests have you had over this 10 year time? It is possible that there is something else going on besides the IBS?
Posted 5/14/2006 8:15 AM (GMT -7)
HANG IN THERE! I am going through the same thing as you. I feel for you. I REALLY do. I had a sudden onset of diarrhea about 2 months ago and it hasn't quit since. I'm about ready to throw in the towel because I'm losing weight and I'm tired, NOT BY CHOICE! I want to get better, but the DOc says that I have IBS with diarrhea. I've had everything poked everywhere you can be poked. THey've done a colonoscopy, Upper GI, small bowel series X-ray and the Doc says, "learn to live with it". YEah, learn to live with it when I'm down to 100 lbs. in a hospital. I totally feel your frustration. I am, however, thankful to know that we are not alone. This board seems tohelp get the frustration out and other people REALIZE what you are feeling like. I can't believe so many people suffer from this. There isn't enough awareness out there about IBS. People just don't understand.
Posted 5/14/2006 8:32 AM (GMT -7)
Thanks Lil, cannyonbabe and Shelly,    Lil I did make it to my daughters mothers day tea!!!  That is a real feet for me...  Cannyonbabe,  I am going for a gallbladder ultrasound and the endoscopy showed gastritis...  I will get the results on the h-pylori and celiac and sprue next week...  Shelly,  thanks so much for the support!!!  It sucks feeling the way we do...  No one but you guys understand how I feel!!!!  Today is mothers day.. My wish is to be better!!!  I guess just one day at a time...  Of course my system is all messed up because of the test on Friday...  I will not go poop for a couple of days..  And then it will be a bad night soon...  I really have no alternative but to live with it...  After 10 years of testing and surgery I still have it...  Thanks again you guys are real lifesavers!!!  I mean that...  Whenever I am at my wits end I come to this site and someone pulls me out of the depression that this terrible thing has on me....  Love ya!!!!

Ryleigh

Posted 5/14/2006 10:44 PM (GMT -7)
I had the endo and coloscopy and to be sure it was nothing else he had a cT done with contrast of abdomen and pelvic. Everything was normal except I had two spleens of all things but it set my mind at ease that nothing else was going on. Here I am taking a laxative because I have a gas pocket that will not break up right and there you guys are trying to stop going. Just doesnt seem right.
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