Hello all, (PLEASE SKIP TO TO THE UPDATED PART) BELOW THE TOP! THANKS
I haven't a clue, why, after the surgeon initially planned to give me a permanent ileostomy, by doing an open surgery...I was severely impacted (top to bottom, had 1 movement in 30 days, and that was with High Tap water enema, but I wasn't eating and had dropped over 100lbs)...but, I mean I ate, just as much until the pain made it impossible.
Okay, I awaken from surgery and I noticed the huge cut I was expecting to see, from top of pelvis to below rib cage.
He explained he needed to do open surgery to try to get the impacted stool how w/gastrografin, or then, manuals squeeze it out, or resect, or pull out entire colon. I awoke and I was still in tremendous pain (as in needing to go to bathroom) but now I had ileostomy. They kept me over 5 weeks, trying all kinds of techniques to clean my large intestine (going in through stoma and injecting a gallon of golytles, several times, and gastrografin, but, w/prolopsed rectum and hemmorhoid, and hardened stool...hardly anythning came out....but once.
Okay, now it's 4 months...and one nurse said, "you have an odd shaped stoma"...went to my appointment to surgeon and he explained it was a loop ileostomy and he suggested to have a permanent one.
I had to hold my tongue, because "that was the plan"!
So I'm suffering everyday, with partial blockages, and my belly is swollen as I gained 30 lbs, and then it began that eating started to hurt as badly as before surgery. Surgeon said, "only way to end your suffering is to turn the LOOP into an END stoma ileostomy.
Has anybody ever had that done...had a loop and turned it into an End Ileostomy? If so, please...can you tell me how the procedure went...recovery...any information you may have from a friend or third party...cause I'm terrified.
Surgeon is fearful to do it "right now' as he thinks I'm too weak to withstand the surgery also I have a prolapsed stoma...and on top of that, I have a double hernia...much worse on my left side of lower belly than on my right side.
I'm in so much pain...he has me on pain meds.
He even sent my visiting nurse, an "irrigation kit", normally reserved for colostomy's not ileostomy's...and that worries me too; but I have to do something as often I can eat and only black water comes out all day....once 3 days went by like that and i was just about to go to ER when it finally released, and stool filled up the bag several times...
(on top of everythign, my prostatitis is actiing up severely, sometimes I can't tell if it's my rectum or prostate gland which is hurting so much...but this is a nightmare.
Anwyay, any information that anybody can send to be about:
1. Turning a loop into an end (permanent) ileostomy
2. Irrigating an ileostomy when it's blocked
Or any other comments would be most appreciated!
Thank you so much, Jay
UPDATED: 12/7/09 PLEASE READ!
My life has gotten so severe, I am near death. As suggested, I should've swtiched Surgeon's...but w/him being the "Chief Surgeon" at major hosptial in NYC, and I live in outer boroughs, where the care is awaful, I stuck it out.
He told me about this double hernia...but it meant nothing to me, and he promised to turn it into full ileosotmy, take out my rectum in 3 months if I gained more weight. I had severe "Colonic global Inertia".
Okay, I went to him last week...I can barely walk...in fact, I can't even put the ileostomy on anymore, because my belly, I don't know if it's from lipidystrophy (accumulation of fat in lower abdomen; from certain meds of another illness), or the colon which is still in me dropped...but, whatever the case, the Hernia...I begged him, "PLEASE FIX THE HERNIA AT LEAST"...between the pain in the rectum, and not able to put on bag tight (as soon as i put it on, everything stops, I have to loosens, and even go as far as basically hold in place all day (Except at night)...and then it leaks...the pressure of all that glue, w/the stomahesive strip....FEELS LIKE I AM HAVING open SURGERY 24/7.
Pain meds...was his answer. But then, w/all the pain meds...,can't urinate...i get blocked, when blocked, can't eat...bottom line.
When I went into hopstial for surgery and was sent home 5 weeks later, for the wrong thing, the loop, instead of the full...I guess he didn't believe I was that impacted;I even have evidence in an email his nurse wrote, 'that it would be FULL open SURGERY" and he wrote, "it's possibly reversible" (so, I didn't know anything back that...but, maybe that should've clued me to ambition to do the loop, because you cannot reverse a REGULAR FULL NORMAL Ileostomy; can you? That's a question?
I don't care about lawsuits...I don't care about anythijng anymore...but I know I Initially gained 25 lbs after surgery to 142 (I"M 6'1", used to weight well over 200's)....but then lost ability to "go".
Now, I'm back down to 129 lbs...can't eat, drinking also expands my stomach...and basically, i've never suffered so much in life. AND NOW HE WON"T:
A. TURN IT INTO FULL NORMAL STOMA/TAKE OUT RECTUM (which is killling; kILLING ME)
B. HE WON'T WON"T EVEN REPAIR THE HERNIAS...as he said, "Not until you gain weight and get stronger">.....i said, "HOW CAN I GAIN WEIGHT, WHEN EATING STRETCHES MY BELLY LIKE A KNIFE".
This was 2 weeks ago. Family, friends tried to call him...finally, family spoke with him...and in his "cold, heartless tone"...sorry, but HE's too weak right now for surgery; he may die. BUT I"M DYING FROM PAIN....I'm DYING FROM WHAT FEELS LIKE A TANGLED/BLOCKED ILLEOSTOMY and the only way I food out "when I do eat? I have to take my ileostomy (I have the flange kind)...is to stick a warm wet QTIP, deep into stoma, and out comes bubles of it...then it stops...PRESSING ON BELLY< terrible for the hernia...otherwise, no matter how much liquid I drink...I even try w/the liquod an sugars (dumping syndrome)......NOTHING gets it out anymore, and my belly is growing larger and larger, as i lose more and more weight.
PLEASE SOMEBODY........TELL ME WHAT TO DO. I've also developed SEVERIST URINE RETENTION/some kind of strange syndrome maybe from all the pressure on prostate...too much desire, but unable to release it...LIVING HELL...........so it's developed into so many problems...that i don't know even what to say anymore.
I go to ER, they say, "you shouldn't go to ER for these things, but your main MD"...and the SUrgeon, says just the oppsite...that, i'll die from surgery.................TRAPPED. WEAK. And I was bertter off...using the the high enemas, although they didn't do much...it was NOTHING LIKE THIS! The surgery was supposed to set things right.....not worsen everything.
I AM TERRIFIED. I AM IN PAIN. I CAN"T SLEEP...except in daytime..........everything i s working against me........and i don't know WHY THIS IS HAPPENING TO ME>............JCATGUY
Post Edited (JCatGuy) : 12/7/2009 12:39:59 AM (GMT-7)