transanal myectomy/ rectal myectomy

It has a few different names.

This is a procedure I am having done next Thursday. Had Botox, didn't work. Dilation hasn't worked. And biofeedback hasn't worked. My so called "third opinion" doc reccomended a rectal myectomy. If that doesn't work, he thinks I should have a permanent ileostomy. This from a renowned surgeon who did absolutely NO tests on me. Just went by tests my surgeon here at home did MONTHS ago. I'm not buying that these are my final two options, but whatever. This whole journey with my doctors here at home and the surgeon she sent me to for another opinion is so complicated so I won't confuse anybody with the details.

Has anybody in here ever had a rectal/anal myectomy before? My doctor here explained that she would cut some of the anal muscle. Hopefully it will help things relax down there. Of course there is a danger of incontinence but what else is new. There's that danger with just about every procedure involving the rectum.

I'm not worried about incontinence. I'm more worried about a permanent ileostomy right now. I have had a deep tissue biopsy before and it was excruciatingly painful for about a week after it was done. But that was just a biopsy. This myectomy seems like a much more complicated thing.

All I am finding online are clinical studies that are hard to read. I want to know about pain level. And is there alot of discharge? What can I expect in the days following this procedure?

 

I have Hirschsprungs Disease. The surgeon in Tampa is questioning that though because I was diagnosed as a toddler. And HD is something that is normally diagnosed in infants. So he told me he doesn't think I have HD. But he didn't tell me what he thinks I DO have. Like ulcerative colitis or maybe Crohn's.

As far as the tests, they were several months old. And the young resident doctor he had with him felt they should maybe do another sigmoidoscopy. He felt it would be better if they can look at what was going on with my pouch/rectum themselves. Not that he didn't trust the test my doc here at home already did. He just wanted to see for himself what was going on. But I guess that idea was shot down.

I guess I'm ok with an ileostomy if there truly is nothing else left to do. I have been dealing with my issues my whole life. Have had 4 colostomies and one ileostomy. So I definately know what I'm getting into. I absolutly LOVED the colostomy. Had one for two years in high school. But it kept prolapsing. Hated the ileostomy. It affected my quality of life big time. My doc and I had a terrible time trying to get a handle on the amount of output. It was worse in the middle of the night. And I had endless trouble with the appliances I had to wear. It was one headache after another. I know some people have a much easier time with ileostomies. But I didn't.