Sunstar,
I got a "good one" for you (meaning not good but was a factor in my deciding to have my sigmoid colon removed due to being told by 3 colorectal surgeons at three top hospitals that my sigmoid was descending in between my vagina and rectum narrowing my rectum from the outside and making it take me 2-4 hours of incomplete bowel moves per morning before I was done and out the door to work instead of my usual two quick moves. I used to have to get up at 4 a.m. to be ready for 8 a.m. Gradually I could not keep this up and was late for work all the time. I was a teacher and not cool to be late when a class is waiting so logically I thought I should do something about
it as I was only 49 at the time and loved my career.
All 3 CR surgeons recommended the sigmoid removal based on a defecogram of me pooping out contrast. This was done at a top women's GYN hospital. The head Colorectal surgeon even showed it to me on his computer. Then he pointed to this structure coming down between my rectum and vagina (space
opened due to a previous hysterectomy) and he said "See that is your sigmoid colon coming down and shutting off your rectum". I was like holy cr-- it narrowed my rectum severely from the side as my (supposed) sigmoid descended.
At the time, of course, I believed the defecogram scan had been interpreted correctly by a real radiologist and that this head CR surgeon knew a sigmoid colon when he saw one on this defecogram scan. He had hundreds of them stored on his computer and was flipping through them til he got to mine. He said this needs to come out meaning my sigmoid. Sounded drastic to me for a non-disease state. So I consulted with the other 2 big hospitals with their CR surgeons. All agreed.
NEVER DID I KNOW AT THE TIME.......the defecogram scan had been read only by a resident radiologist and that her teacher was listed on the report but had not co-signed meaning that he did not check her report for accuracy. I did not know beans about
signature lines on radiology reports. I also had asked all these CR surgeons what is the chance of me ending up with a bag even if temporary. They all said next to no chance or extremely little chance for even a temporary bag. One doc even said, "In the potato field of surgery, bowel resections are one of the simplest things going." I was like OK I did my homework, consulted at 3 top hospitals and had the scan done at the top hospital. NONE of the places did any of the other rectal tests I have since learned about
that are needed to determine if the issue is all structural or if some is function of nerves or muscles, things that cannot be mechanically fixed.
PLUS I never dreamed that it was NOT MY SIGMOID COLON descending into the space that
opened between my rectum and vagina but only some loops of SMALL bowel that descended. ALL I really needed was the small bowel pushed back up into my pelvis, the space closed, and a rectocele fixed (that is just a tuck in the back of the vagina that the poop was really getting stuck in). This could have all been done vaginally.
Well, the sigmoid resection anastomosis strictured (narrowed) in to 4 millimeters in diameter through which I could not pass stool. the CR surgeon who did it dx'd this on xray and said he would "do nothing". His operating partner a GYN did many internal organ prolapse procedures on organs that were not prolapsing, had not been discussed and that I did not consent to. I did not consent to 7 procedures as nobody would have. From all this internal scarring I got the adhesions that were choking off my small intestine. So in essence I could not eat or defecate for a year while I ran around trying to get help.
Even if one cannot eat, we still generate poop. Hard to believe huh? So for 13 months I had to force what poop was in me out of me through all the colon scar tissue by drinking a half gallon of colyte bowel prep. That is like doing 66 colonoscopy preps! My own PCP who did NOTHING to get me help wrote me up as loving laxatives, having munchausens (that means loving to be hurt by docs so you can see more docs) SO NOT TRUE!!!
But anyway, some docs tried to help with conservative procedures, colon anastomosis dilations, diets, etc, but I even had small bowel obstructions on jello. So after seeing 11 surgeons at 7 medical centers in 13 months and losing a 1/4 of my body weight, and getting no TPN nutrition for a year, I finally found a surgeon who said what COULD be done was to get small bowel out of dense scar tissue and do a permanent ileostomy. He used Seprafilm in an effort to try and prevent new adhesions from forming. I was in the hospital for close to a month with NG tubes with post op ileus. BUT finally I could eat.
I have not stopped traveling since as life can be short. So far so good in general and so far (wrap wood) no adhesion reobstructions but just some food obstructions that I melted down with hot tea and grape juice. So talk about
kicking oneself. I am the expert at that, but that diminishes the quality of life that we have left, so am working on that issue with a post trauma stress counselor and doing the best I can. That is where I got the Mantra I gave you
BUT I did lose my career, income, insurance, could no longer care for my mother, and had to put her in a nursing home where she died. SO that one decision, I made to the best of my ability with the info (mis-info) I was given at the time, basically took down my life. But at least so far I still have life. I also learned to ballroom dance. I have done a world cruise, circle south america cruise, africa coast cruise to cape town, cruise to greenland, iceland, etc. Even went to Israel where I met Hodaya who was on this board for quite awhile. It was wonderful So I am not wasting a minute.
Did not tell you my whole story at first as I wanted to keep the focus on you. BUT, the depth to which I can relate to you is more than I originally expressed. I hope that loss of your 2 to 3 feet of small intestine does not affect the success of a new ileostomy. You may have to get B12 vitamin shots monthly after they do the new ileo though because it is only the terminal ileum (end of last part of your small intestine) that absorbs vit. B12. But a shot per month will be a walk in the park for you if you get a good ileo back and are relieved of this pouchitis. That must be bad. So you also did your "homework" for 3 years prior to getting the BCIR and it just did not work out. My thing went into legal land as there is a LOT more to it that I will spare you from, and so different from your case of things just not working out but, you get the idea how closely I can relate to what you feel.
Be sure after you have your new ileo done, that in awhile the doc checks your MMA and your B12 levels. If MMA (Methylmalonic Acid) is high and your B12 is even low normal, then you need the B12 shots. B12 lack is nothing to be taken lightly as B12 is the vitamin that controls our whole neurological systems. Bad stuff can happen if we don't have it in some form or other.
So when ever you kick yourself for going for the BCIR remember my story and that I am right there with you only through my own avenue. Good luck with this. Rosemary