Hello everyone,
I've been battling a seemingly impossible bowel program now for quite some time. I've been completely unable to have a bowel movement in my commode despite trying for roughly the last 5 months a couple days at a time with no results, followed by one day doing it on my side in bed with very large results. In the meantime, probably due to heavy fiber intake I just get constipated and live in discomfort. My belief is that myositis ossificans in my upper right quadricep is extending into my pelvis and somehow in the sitting position pinching or otherwise blocking my intestinal tract.
As a result, I've decided to explore a colostomy. I am currently at a post acute rehab facility in Omaha called QLI, with the stated objective to leave here fully independent. Obviously an independent bowel program is a key part of that! As such, I am meeting with a colorectal surgeon tomorrow, Dr. Maniamparampil Shashidharan to
discuss (someone selected by the staff physiatrist here). A couple of questions come to mind.
1) Since I'm really out of town right now and away from the exemplary Boston medical community and my normal trusted doctors, what should I look for in a colorectal surgeon to ensure that this goes well? Does he need to have experience doing the procedure on folks with SCI? Further, if I'm right that the ossificans is causing issues with my intestine, does he need any particular expertise to ensure that the placement is effective? Anything else I should be thinking about or asking him tomorrow?
2) I've heard a lot about all the upsides of a colostomy, but what are the downsides? For example, I found this video (https://youtu.be/QpRTIdKaWOE) of a C6 saying that one year after her ostomy she started defecating through her rectum again uncontrollably and had to go in to the hospital for a week. She believed that it was leftover stool from prior to her ostomy, but that doesn't ring true to me. Is this normal? Also, I'm on a heavily modified and restrictive diet right now, and I'm curious if that gets any more flexible with a colostomy, or if the same threat of constipation will prevent me from ever eating cheese and the like again. And, of course, I have no hand function but I do have wrists. I assume that I'm going to be able to manage myself, but am I overly optimistic?
I'd love to hear some perspective here! My bias right now is to just tell the surgeon tomorrow that I want the colostomy done as soon as possible, but please warn me if I'm going down a bad path!
Thank you,
Emmett
I've been battling a seemingly impossible bowel program now for quite some time. I've been completely unable to have a bowel movement in my commode despite trying for roughly the last 5 months a couple days at a time with no results, followed by one day doing it on my side in bed with very large results. In the meantime, probably due to heavy fiber intake I just get constipated and live in discomfort. My belief is that myositis ossificans in my upper right quadricep is extending into my pelvis and somehow in the sitting position pinching or otherwise blocking my intestinal tract.
As a result, I've decided to explore a colostomy. I am currently at a post acute rehab facility in Omaha called QLI, with the stated objective to leave here fully independent. Obviously an independent bowel program is a key part of that! As such, I am meeting with a colorectal surgeon tomorrow, Dr. Maniamparampil Shashidharan to
discuss (someone selected by the staff physiatrist here). A couple of questions come to mind.
1) Since I'm really out of town right now and away from the exemplary Boston medical community and my normal trusted doctors, what should I look for in a colorectal surgeon to ensure that this goes well? Does he need to have experience doing the procedure on folks with SCI? Further, if I'm right that the ossificans is causing issues with my intestine, does he need any particular expertise to ensure that the placement is effective? Anything else I should be thinking about or asking him tomorrow?
2) I've heard a lot about all the upsides of a colostomy, but what are the downsides? For example, I found this video (https://youtu.be/QpRTIdKaWOE) of a C6 saying that one year after her ostomy she started defecating through her rectum again uncontrollably and had to go in to the hospital for a week. She believed that it was leftover stool from prior to her ostomy, but that doesn't ring true to me. Is this normal? Also, I'm on a heavily modified and restrictive diet right now, and I'm curious if that gets any more flexible with a colostomy, or if the same threat of constipation will prevent me from ever eating cheese and the like again. And, of course, I have no hand function but I do have wrists. I assume that I'm going to be able to manage myself, but am I overly optimistic?
I'd love to hear some perspective here! My bias right now is to just tell the surgeon tomorrow that I want the colostomy done as soon as possible, but please warn me if I'm going down a bad path!
Thank you,
Emmett
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