I HAVE HAD MY ILEOSTOMY FOR 16 YEARS. BEST THING THAT EVER HAPPENED. NOW I AM HAVING ALOT OF PAIN ABOUT1-2 INCHES INTO STOMA. HAD UPPER GI WITH SMALL BOWEL FOLLOW UP, COLONOSTOMY THROUGH STOMA, SEVERAL STOMA DALATIONS, CAT SCAN, AND THEY CANT FIND A THING WRONG. ALMOST ALWAYS HAVE PAIN AND TAKING VICADINS. WHEN I PUSH AROUND THE STOMA SITE AND GAS COMES OUT I GET A LITTLE RELIEF. EVEN IF I DONT HAVE THE PAIN IF I TOUCH MY STOMA THE PAIN SHOOTS TO THE SAME SPOT. THEY ARE TALKING ABOUT SURGERY AND REMOVING COUPLE OF INCHES AND REPLACING STOMA. I AM VERY WORRIED BECAUSE MY LAST TWO SURGERIES I GOT PARANTINITIS AND ARDS (ADULT RESPIRATORY DISTRESS SYNDROM). ALMOST DIED TWICE. WOULD SURE LIKE TO KNOW IF ANYBODY HAS HAD THIS PROBLEM. THEY DAID THEY SEE NO HERNIA, CROHNS SINT ACTIVE, AND THOUGHT DILATION MIGHT HELP BUT HASNT. PLEASE E-MAIL ME AT twinks@hughes.net thank you for any help

Hi Twinks,

I've also had peritonitis so know why you are so scared.

It sounds as though you have a stomal stricture that needs dilating. If it is only a couple of inches into the stoma this should be able to be acheived with sedation and day surgery.

Even if the worse comes to the worse and you do need to have a stoma revision it really isn't as big an operation as your others.

I knows it's easier said than done but try not to worry too much about this as stress isn't going to help.

I hope things resolve for you soon.

Take care.

Shell

HI SHELL, THANKS FOR YOUR REPLY. I HOPE IT WILL BE A STOMA REVISION, BUT THEY WANT TO GO IN AND REARRANGE MY INTESTINES. I DONT KNOW IF THEY CAN DO THAT WITH JUST A REVISION. I WILL BE TALKING TO THE DOCTOR AND SURGEON SOON. ANOTHER QUESTION IS AFTER SURGERY DO YOU KNOW OF ANYBODY WHO HAS BAD HALLUCINATIONS DURRING RECOVERY. THAT ALSO SCARES ME VERY MUCH. THANK YOU VERY MUCH AND I AM GOING TO PRINT THIS AND SHOW IT TO THE SURGEON

Hi again Twinks,

I have had hallucinations post surgery due to morphine. The PCA (pump) version gave me really strange hallucinations, even though oral morphine had no such side effects.

I can vividly remember after my very first surgery seeing a small bluebird flying around the ward and sitting on top of the curtain rail of the bed opposite. It was twittering away beautifully and all I could think was "What a lovely hospital! They even provide a bluebird to cheer up the patients!"

I also had some not so nice hallucinations where I felt very threatened and panicky while on morphine and I used to get those awful twitches. I'd just be nodding off in a blissful morphine haze when all of a sudden I would be jerked physically awake and my heart would be racing!

Do you know if your hallucinations were due to your pain management post op? If it was related to a certain drug then I would talk to your anaesthatist before your next operation to discuss an alternative pain control.

I had an epidural with PCA back up for my last operation and because the PCA offered a lower dose of morphine I didn't have as many side effects. It also managed my pain much more effectively than just a PCA on it's own. Perhaps that's something you could ask about?

My last surgery was to free off some nasty adhesions and a twisted gut as well as repair an incisional hernia. My surgeon warned me that he may have to move my stoma to the other side of my abdomen. As it happens he didn't need to in the end but if he had it would also have meant that he would have had to "rearrange" my intestines. I really wasn't worried because I trusted his integraty and knew he would only do what he needed to do to make my stoma function.

I think that as you are so worried about this next operation that you should write a list of your worries and take them with you to show to your surgeon before your surgery. Go through them one by one and tick them off as and when your surgeon answers them. Make notes if necessary so that you can go over the answers he gives later.

I hope this helps. I'm sure there will be others along soon though to offer their support.

Take care.

Shell

THANKS AGAIN, THIS SITE WAS A GOD SEND AND YOU TOO. HOPE YOU DONT MIND IF I PICK YOUR BRAIN. I THINK I WAS TOLD THAT THEY SAY PREDNISONE WAS A BIG REASON FOR HALLUCINATIONS. THEY WOULD ALWAYS GIVE ME A HIGH DOSE (300 - 400 MILLIGRAMS A DAY BEFORE SURGERY). THAT IS WHAT CAUSED MY PAROITINITIS. THEY COULDNT FIND OUT WHAT WAS WRONG ABOUT A WEEK AFTER SURGERY, I FELT BLOATED AND MISERABLE, THEY GAVE ME AN ENAMA AND I NEVER HEALED, THE WATER STARTED COMING OUT THE INCISION IN MY BELLY. NOT TO WORRIED ABOUT THAT, HAVENT BENN ON PREDNISONE FOR YEARS. VERY WORRIED ABOUT ARDS, AND HALLUCINATIONS. I SAID SOME VERY TERRIBLE AND IGNORANT THINGS TO MY WIFE, AND IT SCARED THE DEATH OUT OF ME. I GET VERY NAUSEATED WITH MORPHINE AND THEY GIVE ME DEMORAL, BUT I HEAR THEY ARE TRYING TO GET AWAY FROM THAT PAIN MED. I HAVE TO GO THROUGH A VA HOPITAL (VETERANS HOSPITAL FOR ALL OF MY MEDICAL PROBLEMS FOR FINANCIAL REASONS. THEY ARE VERY GOOD BECAUSE THEY ARE ALWAYS ATTACHED WITH A UNIVERSITY. I GO TO HINES VA HOSPITAL, ITS DOCTORS AND SURGEONS ARE FROM LOYOLA UNIVERSITY, WHICH IS A VERY GOOD MEDICAL CENTER, SO I AM LUCKY THERE. I WANT TO THANK YOU AGAIN FOR TAKING YOUR TIME TO HELP ME OUT. I LIVE IN ILLINOIS, AM 51, HAPPILY MARRIED WITH A 12 YEAR OLD SON. THAT IS ONE OF MY BIGGEST WORRIES, MY SON. THANKS AGAIN

Twinks,

I did not have any hallucinations like seeing blue birds flying aroung my room (that must have been nice, Shell) but just before I was going to be released after my first surgery for some reason I just flipped out. I don't remember any of it but I was totally incoherent and saying lots of bad things. That had to hold me down to do anything and I eventually ended up in the ICU for a couple of days. They never did find out what happened and I don't want to ever have that happen again, so I understand your concerns about that.

Shell gave you some good advice about writing down the things you are worried about when you talk to your surgeon and get them addressed before surgery. I am a note writer and it really helps to remember all of the questions when the time comes to ask the surgeon. My lists sometimes got a little long and the surgeon jokingly said one time in the hospital that she was going to tell the nurses to take away my pen and paper

Jim

Jim, I'm guilty of being a serial list writer, from questions to ask my doctors to what tasks I need to complete in a week. Very anal, but my short term memory is really bad! (I blame all the anaesthetic and drugs over the years for that.... well that's my excuse! ) If I don't make lists I will almost certainly go completely blank when it comes to seeing the doctor or even trying to remember what I went to shop for in the first place.

Twinks, it's interesting what you say about the steroids being responsible for your hallucinations. I was still on prednisolone when I went though my first operation, which was when I had the bluebird experience and also when I suffered from a perforated j-pouch which in turn caused my peritonitis.

I would be interested in Jan's take on this theory.

Shell

HI SHELL, NEW AT THIS AND DONT KNOW HOW TO GET A HOLD OF JAN

Hi Twinks,

Here's a link to Jan's profile. Just scroll down a little and you will find another link that says "send a private message to Jan Dollar"

http://j-pouch.org/eve/personal?x_myspace_page=profile&u=6061030921

She's a great source of knowledge and I'm pretty sure that she will be more than happy to answer your questions.

Take care

Shell