Are there any POSITIVE results to having a perm ileo?

     Reading all these "horror" stories in here is scaring the Bejesus out of me!  I am scheduled to undergo a perm ileo on June 28th but these post surgery posts make my present condition sound like a piece of cake!

     I have ulcerative proctitis.  Yes, I am prednisone dependent and NOT happy about that and neither is my GI doctor.  I've exhausted all my options with my present GI....6MP, Remicade (which I built up antibodies against after my 3rd infusion) and a two month course on Humira.  He sent me over to a "world reknown" GI specialist at the Univ of Pa Hospital last September.  This was prior to my starting Remicade.  The specialist didn't offer any other options than what my regular GI doctor recommended.  However, after the failure of Remicade, my GI doctor mentioned surgery to me for the VERY first time ever.  The thought of surgery scared me so that was why I gave the Humira a shot.  I found this surgeon online...he is head of colorectal surgery at Pa Hospital and trained at the Cleveland Clinic.  At my one and only visit to him, he did look up my rectum, no flex sig as I was too inflamed and had a flex sig less than two months before.  His  responce was ..."wow, you ARE suffering."  He said I was not a candidate for j-pouch, too high of a risk because of my age, but since I told him I had no problem with the idea of wearing a bag, he was pleased.  He said it was a lot less stress on the body to do a perm ileo.

     My present symptoms...urgency and pressure in the rectum.  I only go..providing I watch my diet, which sometimes I don't...a few times in the morning...but have very little control...have to wear a kotex pad.  Not a formed stool.  If I eat too much the day before, then I am on the pot several times.  The bleeding stopped because I had to increase the prednisone.

     My main question is ....you don't think the surgeon would perform the surgery if he didn't think it necessary do you?  Or do these guys just like to operate?  I also have to pass a stress echocardiogram before they will perform the surgery.  Since I have situs inversus (heart is on the right side,as are all my organs), the technicians screwed up the first echo...didn't get a good enough reading and the heart doctor wouldn't "in good conscience" pass me for surgery.  NOW I have to go back next Tuesday for a nuclear stress test and that has me upset because that dye will go through my intestinal tract and God knows how that will affect this flare..ugh..I am sooooo disgusted at this point.

     One more thing..sorry this is long....when I told my regular GI doctor I found a surgeon on my own, he was sort of upset and said he wanted me to go BACK to the GI specialist I saw last fall and maybe he could come up with a different kind of treatment.

     Just wondering if I made the correct decision about this surgery.

Oh Christine,

How I sympathize with you having to decide about this. If you have your ileostomy done laporoscopically you will likely not form any adhesions. If they make the stoma correctly, coming out like a little spout so poop goes into the bag and not down your skin, then it will work. And if you are fitted with the correct appliance (there are many to choose from so don't sweat this part), then you should be fine.

I HAD to have one or I was going to die. So I did not have a choice. In fact, I was lucky to find someone willing to do it to save my life. I permanently lost the use of my colon and my rectum and my pelvic floor muscles due to injury incurred in a surgery at another hospital where they misdiagnosed the cause of my symptom of intermittent incomplete rectal emptying. In addition to losing the use of rectum and colon permanently I also lost the use of my small intestine for 7 months due to it being trapped in severely dense adhesions. I lost 1/4 of my body weight and got to 99 lbs. I obstructed every time I tried to eat. SOOOO for me to find someone willing to dredge my small intestine out of scar tissue and do an ileostomy meant I would live. I have been on multiple cruises since including a world cruise. I also ballroom dance.

Life is not perfect. I have had a few food blockages and have passed out twice from dehydration due to no longer having the use of my colon to reabsorb water back into my body. HOWEVER, this beats being dead. And in general I am well. SO for me the choice was a no brainer.

I sense you are dealing with someone with your best interest at heart IF all possible meds have been tried in your case. My ileo surgeon certainly had my best interest at heart. My original surgeons with the misdiagnosis (too long of a story to post to you) operated on organs that gave me no issues, did not do tests they should have, saw I did not have a redundant sigmoid colon, removed it anyway, operated beyond consent, no diseased tissue, etc, now they had $$$$$$$$ in their eyes. I also found out AFTER the fact that they have 9 suits on them. If you want to check your proposed surgeon's track record, go to the court house of the town he works in, go to the civil superior court clerk's office, and ask for the docket numbers of his suits. If he has any you can actually get copies of the actual suit complaint right there on the spot. Don't even bothering asking your state medical board as they just cover up for the docs. I found all this out AFTER the fact.

So I am pretty good at telling which doc is for real or not. AND I sense you have a real one. But do check at the court house of the city in which he practices.

Good luck with your decision.

Rosemary Ileostomy

Haha, I'm actually laughing at a lot of the "horror stories".

I've had my ostomy for a week now and let me tell you it is great! Of course NO ONE told me pain wise how I would feel after surgery. Pain from UC = gone, completely. Pain from having major surgery = sucks (of course I wasn't in shape when I went in for surgery so I guess that explains some of it).

Nevertheless, I've been home for 2 days now and I'm able to eat pretty much whatever I want, although I avoid the foods they told me to avoid. It is soooo amazing being able to eat and walk around and go places without worrying where a restroom is at or having to worry about cramps and medication.
So far I dislike the one piece bags, but I haven't had any issues out of them. Still though the weirdest thing that I'm trying to get used to is being able to feel when my stoma "goes". Its kinda surreal that I'm able to see and touch my small intestine and watch it move around (ostomy nurse told me that is how the intestines look and function on the inside which I find kinda cool).
I've ate a little bit of mexican chicken fajitas, mcdonalds, cheese, and so far I haven't had any smell issue at all. When emptying there was sometimes this funky odor but nothing that would put the restroom out of commission, I did try a couple of drops of 3% hydrogen peroxide and that worked.
I am having some skin irritation, but that is because when my WOC nurse let me put on my own bag the day I went home, the stoma was kinda swollen, but the next day it went down in size so blah.

So far though, it completely beats UC.

Like Pam said, most people arent here with happy stories, those of us who are, are here to help people like you who are worried! To show you that life is good after surgery, and that it is worth it!
I just read a post on the UC board where you ate a buffet and were sick all night, and i thought, soon she will be able to eat everything on that buffet and not worry!
I know how easy it is to secondguess yourself, i am sure that all of us who chose surgery did it at least once, but you just have to keep your pro and con list in mind. And just remember that most people who have surgery are super happy afterwards!

I'm one of those 'super happy' people!!! I come back here to post because I want others to know that it is not always about problems...

I've had my ileo for 10+ years and just had my proctocolectomy w/end ileo in 2008...wish I did it sooner...my dx was Crohn's Colitis with too many abscesses/fistulas/setons not to mention all the other pains that went along with it too:(

I won't lie and say it's easy...I was 40 (my b-day present!) and it took me twice as long to recover when I compared it to my other surgeries. Every day was easier...it was just slow for me.

If you are worried that the doc will just do an ileo to make money...go to a hospital like the Cleveland Clinic. Those docs are on salary and do not make money for procedures...kind of takes the 'wonder' out of the equation! If you are near Philadelphia, it might be an 8 hour drive, but you could base it as a second opinion.

Good Luck...you'll be glad you did it...and you'll wake up without disease pain!!!

        Ok...thanks..still confused..lol.  I believe the prednisone is the only thing keeping ths at bay and I KNOW I cannot stay on it forever.  Once I taper down, all HELL breaks loose.  Right now, I will just take one day at a time.  The surgeon who will perform the surgery is Dr. Robert Fry, head of colorectal surgery at Pa. Hospital in Philly.  I ran into a woman I know and she said he performed removed her friend's colon several years ago and the woman was very pleased with his work.  Guess all I can do is hope and pray for the best.

     I am able to get out and about mostly every day.  The only days I cannot are when I was not watching my diet.  I never eat spicy, never have and probably never will.   Is it best to eat six small meals a day?  How often do  you have to empty your bag?  Another concern is leakage, especially during the night.  I will most likely have to put pads under me.

The dcotors like to keep everything/everyone in their own hosptial ( finacial reasons-lol)
Susan

hi i had my permanent ileostomy done 9 yrs ago i had ulcerative colitis from the age of 13 and was on a lot of medicines none of which controlled it i was practically housebound from the age of 19 - 21 i am so glad i had my op it gave me back my life i have had hardly had any problems other than occassional gas and a bit of leaking if ive eaten the wrong foods ( such as nuts mushrooms oranges) i avoid these because i also find these painful but ive not needed any further surgery so far and i am so much healthier the only thing for me personnally i wish id been told about is the possible risk to my fertility so i could have had the chance to complete my family without struggling.

oh yeah one huge positive i can go whenever wherever so dont have to worry about finding a toilet lol

Post Edited (raf-wife) : 6/9/2010 12:44:53 PM (GMT-6)

I will echo the positive side of this thread. I had the perm ileo in Feb of this year and can not tell you what a great change! I am an outdoor guy and I am back to enjoying things again. I  have had one obstruction and it was because  I wolfed down a meal early on and did not follow guidelines and chew properly.  It passed after a few hours..Grape juice is a wonderful thing! I am sleeping and almost all  night pain free..Surgery is a big step, but for me it was a no brainer. I hope you find your peace ... and just think medicine free!!!