Hi, I really need shared experiences. Please be kind. Thankyou.
If you read my sig you see exactly what happened, where I'm at. Yesterday July 26th/2016, met surgeon. I am 7 mos out of 2 emergency surgeries for untwisting small bowel and adhesions during my hospital stay Nov 23-Dec 23/2016.
Those 2 surgeries were 9 mos out of a Feb., 2015 total colectomy due to redundant bowel, anismus, intussusception. I was 89 pounds. Typically 115. Back at my reg weight again. Back then at 89 pounds, can't get it out, can't put it in. Now I'm good nutrition wise.
Here's the deal with me. My surgeons valid concerns are, if we do a straight reversal, he thinks it won't work. We did that Nov 23/ 2015 when he originally went in to give me an ileostomy. Found twisted small bowel, adhesions, fixed it, attached me back up, I felt with gloved fingers, my rectum still folding, closing my passage. No go due to it all folding in on itself so Dec 15/2015 put in loop ileo. Which brings him to, he doesn't think straight reversal will work, even having had time to heal and strengthen.
My options, stay with loop, go to end ileo, or try J Pouch.
J Pouch risks. If taking my rectum out, using 2 feet of small intestine making Pouch, works, I'm good to go.
BUT
If taking my rectum which fixes the telescoping, BUT the pelvic floor dysfunction Anismus, tightens the area to prevent
evac, I'm in trouble. Then they have to go back in, do an end ileostomy, AND I'm left with potential short bowel syndrome.
Out of 4 patients my hospital has done with my condition, 2 turned out very well. 2 did not. I asked him.
The 2 that did not, are close to short bowel syndrome having no colon like myself, PLUS now, they've lost 2 ft of small intestine, due to J Pouch procedure and are back in an ileostomy with a shorter small intestine.
I have much thinking to do. I am a fitness girl. Love beaches. Water, boats and yes, vain in that aspect, bikini girl. Wanted to be back to "my normal". With ileostomy, yes, I can eat, work out, back to business. Prior it got so bad I had to tape a garbage bag around my body laying on my couch with knees bent and feet on ground for 2 years to evac. It would only come out that way. So high dosing laxatives to empty in a bag on my couch. I was so so sick, couldn't eat to go through it daily. I finally wrote an impact letter to a to surgeon to help me. He fast tracked me through the system. NO one else believed I was so bad, 8 others before him, refused to give me function test, told me to take what I was already taking to evac. It was awful. I was treated like I had mental problems and just wouldn't eat. Complete medical abuse.
So, I have a top, plus humane surgeon now point being.
Is vanity a good reason to risk a 50% chance of regressing to a "worse" condition" if J Pouch doesn't work?
Of course not.
So, looking for those that have my conditions, that are in a J Pouch, and I would like to know, how are you doing?
I'm researching as much as I can.
My surgeon says, "take till mid Aug to make your decision" if you want end ileostomy from your current loop ileo, or try J Pouch knowing the risk." It weighs heavy on him, he expressed that he didn't want to see me health or business or activity wise go back to or possibly worse, than the way I was due to J Pouch not working and getting short bowel syndrome.
However, he understands, if I want to try. He's very "human".
He told me, most with anismus, and intussusception, get ileo for resolution.
So, from his top hospital for gastro in my country's perspective, I've a 50% chance for J Pouch to work, using 2 out of 4 patients that tried J pouch with my condition and had it work.
I ...........................he kind of left me thinking my options were easier resolution when I got my end ileo at our 1 month post op appointment 6 mos ago.
I guess they want you out of your head to heal. However I'm a realist, so walking into my reversal appointment 7 mos after ileo, and hearing it was actually this "iffy/risky", was................I wish I'd been told upfront at my 1 month out ileo post op. I'm just made that way.
I appreciate full facts pronto and then I internalize and process the information. I don't like things being withheld. Oh well.
Thankyou for coming by.