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Hello Im new!! I have IBS, Fibro, a feeding tube and now need an Illeostomy. Have lots of Questions!

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Posted 7/1/2007 6:33 AM (GMT 0)
Hello my name is Tracy, Im a married mom of 5!!  I have had IBS for 11 yrs now; Fibro for 10, but diagnosed 8 yrs ago; and recevied my feeding tube in Oct.  I have lost a total of around 80 lbs in about 4 yrs of fighting to keeping it on!!  My questions start with... Is there anyone out there with both a feeding tube and an Illeostomy???  Does anyone have either caused by IBS??  I do understand that IBS is a very terrible and misserable problem to have... but I just have never heard of anyone needing either because of IBS!!!  I have been sooo very sick for sooo very long I am just having a hard time believeing this is being caused by IBS... I have met sooo many people with IBS and none of them have any of the problems I have had.  I am wondering if Im being misdiagnosed.. again!! Oh and have I mentioned I have been bed bound for over 7 yrs now with both the Fibro pain... but more from being sick with the stomac probs... And how do you deal with 2 devices protruding from your body!! I want to know if you do feel better after getting the Illeostomy... did you get your life back???  Gain the weight and muscle back???  Be able to eat again???  And is all of what you have to deal with the Ileostomy worth it???  And my last and most important question...  how do you tell your kids that you may have to go threw yet another surgery... having them thinking the last one was the "cure"??  Oh their ages are 15, 13, 11 1/2 and my twins just turned 10!!!  Any help would be soooo very appreciated!!  Im just an emotional wreck trying to make just a life changing decision like this!!!

Completely and Totally Baffled!!

Tracy Mt

Posted 7/4/2007 4:12 AM (GMT 0)

Hi Tracy,

I guess you have Irritable Bowel Syndrome, right?  You usually don't need to have your colon removed for that, as far as I know.  I don't think a surgeon would remove a colon, unless it was diseased, or not functioning at all.  I know a couple folks with fibro, and they don't have trouble eating.  I know some folks with Irritatable Bowel, and they are functioning some of the time, and meds seem to help some.  Also they are eating ok too.  I am sure hoping someone will come on here with better advice than me.  I just wonder about you seeing someone at a teaching hospital for another look at you. Those docs love the unusual cases. 

Take care,

Hopeso

Posted 7/5/2007 6:23 AM (GMT 0)
Hopeso,
Well I guess that is my major question.. do I have IBS??? My doc keeps labeling me under that diagnosis. He says I have a "slow gut", and am having problems with the motility in my large intestine. I am trying, with help from other on the IBS forum to figure out why he would want to remove my colon... atleast at this time... I do understand that I am loosing too much weight to be waiting around for a ton more tests... He put me on a feeding tube.. in my mind.. to buy us some more time to figure this all out!! Even though I have been seeing this doc for 2 yrs now... Either I am not understanding what he is saying, he isnt explaining it well... or my thoughts is we still dont have a True diagnosis!! As I posted on the IBS sight.. I havent yet got a successful colonoscopy done.. I just want to be possitive in my diagnosis, and truely understand why, before I do something life altering!!! And I just havent heard of anyone else out there even close to me!!! I have asked to be sent to Mayo, but I am on a waiting list... and it will be 6 months before I get in... He wants to send me to the Moltilty section of mayo.. and Im questioning that decision.. We already know my stomac is slow.. why do we need to reconferm that.. I want to know why its slow.. and feel that they need to take a look inside (colonoscopy)!!! To make sure I dont have UC or anything else along those lines.. But from what I have been reading, my symptoms are diff. I tend to get soo constapated.. to where I can go 4 to 6 weeks without a BM!! But there are other times I can eat.. and have to put my plate down to run to the potty... So Im on an injection med call Octreatide (spelling?) before I eat to control the spasms... and to stop the intestines.. or D!!! But if I have a slow gut.. why would he want to stop it!! Do you see that the inconsistancy!!! I was on Zelnorm for a while.. and at first it didnt work.. but then when I tried it again later it did!! But then they took it off the market!! So now Im back to square one!! Im sorry for rambleing.. but Im desperate for some help!!! I really dont want this surgery.. but am will to do it if it is going to save my life!!! As I do have children.. and for them I will do ANYTHING!!!
Thanks So much Hopeso for your help!!! And I did want to say.. I totally agree with your post!! That is why I went looking for this site!!
Tracy Mt
Posted 7/29/2007 7:03 AM (GMT 0)
To all who have helped me with my previous post: Newbie with IBS, Fibro, Feeding Tube and looking at getting a Illeostomy!! And to whomever else who is out there!!!
As some of you have read, I just knew my doc wasnt dxing me right!!! My last appt in April my doc told me he wanted me to get an Illeostomy Bag.. and I just knew that you didnt do that, or put feeding tubes into people with IBS!! And I tried to get a reason out of him.. and the best I could get was that my tummy was slow, and that he thought my large intestine was pulling too much fluid out making me C!!
Well I just saw him again, and it was an awful trip!!! I was SSSOOO sick!! So I was relying on my hubby to write down the name of the dx!!! And of course he didnt!! He was too worried about me!! So now I have to call back and ask what they were again!! But the jist of what happened was he said that he thinks my stumac is paralized!!! So nothing is moving!!! And it is making it impossible to absorb anything!! So I am assuming he thinks that the fluid of the feeding tube takes less to move, and it is broken down for me...
But I am still upset, cuz he never gave me his reasoning for why he came up with this dx!! What tests told him this.. why he never gave me the dx without me asking for it!! And he tends to agree I need to go to Mayo... but not until I asked to go!! And he hasnt given me any reasoning on why he thinks I should!! What tests he thinks I need!!
But when I asked him.. "so the Illeostomy is out then", he seemed to get excited!!! And then he asked me if I wanted it done!!! And seemed to look disappointed when I said "NO!!". But he is acting like its an inevitable thing!! Yet wont tell me anything, like why!! I would have fought harder for those answers, but I had the worst trip ever!!! I was sooo sick!!! And when I get to fevering like that, and only having 2 hrs sleep, I cant think straight!! And I just wanted to go home!!! I even had to rescedule my first appt of the day for after this one, cuz I was too sick to leave the hotel room!! (I always have to go up the day before, cuz its a 2 hr drive, and I tend not to have enough energy to travel and make the appts!!! And I worry cuz its 45 mins or so between rest areas!!!)
So I sit here wondering what to do next... wait to see him again and ask!!! Which I absolutely hate waiting for appts... cuz that is just more time Im just waisting in pain!!! Or call... but that is alot of questions for a nurse to leave a note for... or write him... or give up on him and start looking for a second oppinion, while I wait for my turn at Mayo (about 5 more months)!!!
Any thoughts???
Thanks!!!
Tracy Mt
Posted 7/29/2007 2:19 PM (GMT 0)
i would find another doc asap. the current one doesn't seem to know what the heck is going on!!!!

--matt
Posted 7/30/2007 2:22 AM (GMT 0)
I'm so sorry to hear you've been so sick. Getting a correct diagnosis is absolutely necessary, so either your doctor or another one has to do some tests to find out what you really have. Once you have a diagnosis, then you can find out if it can be treated with medicine or surgery.

If you find out that surgery is the best way to fix your problem, then I assure you that your quality of life will improve drastically.

My colon was diseased with Crohn's for 7 years, and I was also scared to have it removed. But once they removed it, I felt better right away, and I do have my quality of life back.

Having a ileostomy is so easy compared to being sick. It takes me less than 10 minutes a week to change the adhesive wafer. If you had one, you'd be able to eat solid food again, which would be a Godsend right now.

I would not wait on this. Either your doctor has to do the tests or you need to find another one who will.

Good luck!
Posted 7/30/2007 2:50 AM (GMT 0)
i think a new dr is in order right away too! Just so you know, an ilesotomy wouldn't stick out of your back. And to me it is worth it compared to the way my life was before.
Is fibro cystic fybrosis, i am just curious. Anyway, I haven't heard of a stomach beign paralyzed but since it's a muscle I suppose it could be. But if it were your actual stomach then an ilesotmy wouldn't help. So they would need to be thinking of your instestines, it gets so confusing, lol, I had the hardest time figuring out the difference! Anyway, i have heard of stomach muscles going into seizures though, where they lock up for a while and then loosen, which could explain your problems. I hope you get some help!
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