Hi,
I'm new to the forum and looking for some advice.
I got diagnosed with Crohns in 1998, got a bowel resection and "temporary" colostomy in 2000, and had another surgery or two before a total colectomy, an ileostomy and a rectal stump sometime before 2002. I was doing so-so with the Crohns until I started Remicade in 2005. Since then the Crohns has gotten much better.
Everything had been going along quite well until about May this year when I started getting bowel obstruction-like symptoms. Instead of the norm where I would get the symptoms for a day or two, they stuck around for weeks, at which point I started eating less. I started feeling somewhat better, but also started losing weight.
After a meeting with my specialist and a CT scan, it looks as though I have a parastomal hernia, with an extra loop of my intestine coming through my abdominal wall. My specialist strongly suggested surgery was necessary to repair the hernia.
At my first meeting with the surgeon, I was presented with a question I had never expected : he asked me if I wanted to be "reconnected" or if I'd prefer to have my rectum removed at the same time he fixed the hernia. (It sounded to me as though there is an increased risk of developing cancer in the rectal stump if it's unused, so it would be best to get rid of it if I didn't have any plans to use it.)
My initial reaction was that I should stay with the tried and true, as my ostomy had changed my quality of life dramatically when I first got it in 2000. My memory of the time immediately prior to the ostomy is that of a life where my every thought included a calculation of the time and distance to the closest bathroom.
After some time to think, a flexible sigmoidoscopy, and biopsies that show a relatively healthy rectal stump, I'm currently planning on getting "hooked back up."
And that brings me to my actual question : does anyone have any experience / advice in this area? Specifically, I'm worried that after my surgery (3 weeks away) I'll once again be tied to the bathroom. I don't have any large intestine, and I haven't used any rectal-related muscles for 10 years now. Maybe they've forgotten how things work?
I currently visit the facilities 5 to 7 times in a 24 hour period, but mostly on my terms as I don't have "the urge" to go. While not always convenient, my ostomy hasn't really been a big burden, and most of my thoughts of it are good as it drastically improved the way I lived life. However, I can't help but think wistfully of being reconnected again.
Any advice appreciated!
I'm new to the forum and looking for some advice.
I got diagnosed with Crohns in 1998, got a bowel resection and "temporary" colostomy in 2000, and had another surgery or two before a total colectomy, an ileostomy and a rectal stump sometime before 2002. I was doing so-so with the Crohns until I started Remicade in 2005. Since then the Crohns has gotten much better.
Everything had been going along quite well until about May this year when I started getting bowel obstruction-like symptoms. Instead of the norm where I would get the symptoms for a day or two, they stuck around for weeks, at which point I started eating less. I started feeling somewhat better, but also started losing weight.
After a meeting with my specialist and a CT scan, it looks as though I have a parastomal hernia, with an extra loop of my intestine coming through my abdominal wall. My specialist strongly suggested surgery was necessary to repair the hernia.
At my first meeting with the surgeon, I was presented with a question I had never expected : he asked me if I wanted to be "reconnected" or if I'd prefer to have my rectum removed at the same time he fixed the hernia. (It sounded to me as though there is an increased risk of developing cancer in the rectal stump if it's unused, so it would be best to get rid of it if I didn't have any plans to use it.)
My initial reaction was that I should stay with the tried and true, as my ostomy had changed my quality of life dramatically when I first got it in 2000. My memory of the time immediately prior to the ostomy is that of a life where my every thought included a calculation of the time and distance to the closest bathroom.
After some time to think, a flexible sigmoidoscopy, and biopsies that show a relatively healthy rectal stump, I'm currently planning on getting "hooked back up."
And that brings me to my actual question : does anyone have any experience / advice in this area? Specifically, I'm worried that after my surgery (3 weeks away) I'll once again be tied to the bathroom. I don't have any large intestine, and I haven't used any rectal-related muscles for 10 years now. Maybe they've forgotten how things work?
I currently visit the facilities 5 to 7 times in a 24 hour period, but mostly on my terms as I don't have "the urge" to go. While not always convenient, my ostomy hasn't really been a big burden, and most of my thoughts of it are good as it drastically improved the way I lived life. However, I can't help but think wistfully of being reconnected again.
Any advice appreciated!
