I need ALL the input I can get! I am 24 years old and I was diagnosed with a "global" motility disorder (stomach, small bowel, colon, and rectum are all affected) six years ago at Mayo Clinic when I was 18. November 2007 at 21 years old, I had a total colectomy with ileorectal anastomosis. This helped for a few months, but then everything slowed down again and became very painful. I have done everything- meds, supplements, biofeedback, researched myself into the ground trying to find something, anything that would help. Nothing works. My transit time (keep in mind I don't have a colon) is anywhere from 18-36 hours. My surgeon feels that all options have been exhausted and that the next step is an ileostomy. I have been ready for this for YEARS, but I do have a couple concerns...
First and foremost concern: my surgeon said he would most likely do a loop ileostomy that functions permanently. I was not happy to hear that. I have horrible rectal spasms, and in my mind, it seems like severing the connection between the small bowel and rectum (and thus forming and end ileostomy) would provide greater relief. Please comment on that...have you seen any research, or heard or experienced anything on this topic? I would love for him to remove the rectum, but I don't think I have any chance of that happening even though the defecography showed that I couldn't get ANY of the barium out.
Any equestrians out there? I used to ride competitively and I miss it terribly. Even if I can't compete, I would still like to be able to ride again for leisure.
Another issue is that my parents are vehemently opposed to this surgery. Think WWIII. It's that bad! My mom has been an oncology nurse for 40 years, so all of her experiences with ostomy patients have been awful because chemo and radiation have ravaged their bodies and caused all sorts of problems with their stomas. Obviously this won't be the case with me, but she cannot separate the two. They think having an ileo will be a death sentence for me (when it could be a new beginning). Why is she so paralyzed with fear over this? I am miserable and my parents will be the first to admit that I have no quality of life, but they are still opposed. That disconnect is mind boggling to me. My total colectomy wasn't scheduled until I was down to 83 pounds (5'6") and I had professors stopping me on campus asking if I was ok. I don't want to be that sick again before my parents finally agree to surgery.
Any information/experiences you can share with me are so appreciated! How you feel, what you can and cannot eat, words of wisdom, questions to have for my surgeon, etc. I scheduled a secret appointment with him on January 12 so I can talk to him without my parents present and also so I can make him aware of how freaked they are. Please throw out any bit of advice on the surgery, life with an ileo, etc. I just want to feel better and get on with life. I have watched plans of med school and other big things go down the drain; I am applying to graduate programs, but I know I cannot make it through feeling the way I do.
Thank you so much!
Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later...
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.