My colon was way too long as well. One of the Mayo docs and my surgeon both called it "long and torturous."
Wow. I'm really sorry to hear that it is so hard to get adequate testing done in Germany. There is an entire research center at the Mayo Clinic that focuses on motility disorders and enteric neurology. If you are ever able to make it over to the States, go to the Mayo Clinic in Rochester, Minnesota. Dr. Michael Camilleri is pretty much the foremost authority on motility disorders in the US, if not the world. He is the head of the Clinical Enteric Neuroscience Translational and Epidemiological Research (CENTER) Program (http://mayoresearch.mayo.edu/mayo/research/ensp/index.cfm). His credentials are here: http://www.mayoclinic.org/bio/10289402.html; and his research interests are here: http://mayoresearch.mayo.edu/mayo/research/staff/camilleri_m.cfm. Mayo was the best experience of my life, despite all of the poking and tests that went on. I really hope I can go back there soon because they are the only ones who are making any headway on researching and treating motility disorders. The first time I met Dr. Camilleri, he came into the exam room, sat down, looked me straight in the eye, and said, "We will find what is wrong. I hate to see young people suffer."
I know it's hard to have an ignorant doctor place an eating disorder label on you. But, if you are ever able to see Dr. Camilleri, he will look beyond that. He did for me. After he reviewed my test results and listened to what I had to say, he said, "Well, I don't think you have an eating disorder. You are clearly in a lot of pain."
I'm pretty sure my dysmotility is neurogenic. I also have numbness and tingling in my hands, down my left thigh, burning nerve pain that shoots all around my abdomen and back, and rectal nerve pain that feels like a lightning rod...it's really not pleasant.
Constipation is a huge problem for me. The total colectomy definitely helped, but the motility in my small intestine is so slow that food just sits in there. My transit time is longer that someone who still has a colon. I definitely feel worse with SIBO. The second I eat anything, I get a massive amount of bloating, so adding SIBO on top of that makes it worse. The bloating is extremely painful.
An ileostomy isn't really an option for me because it wouldn't help my small bowl dysmotility. Regardless of whether my small bowel is anastomosed to my rectum, or whether they went back in and did an ostomy, the small bowel moves so slow that I will have very slow transit either way.
You're absolutely right! No doctor will do a colectomy on a 21 year old unless they have a life-or-death case of UC. I had my surgery here in Dallas with Dr. Clifford Simmang. He is one of the best colorectal surgeons in the country. When I had a consult with him, the only reason he would consider doing a colectomy is because of all the testing I had done at Mayo, and Dr. Camilleri's suspicion that a colectomy might be the only option. Dr. Simmang looked over all the tests and Dr. Camilleri's notes, and he truly felt that a colectomy was the best option for me. A total colectomy was the last resort, and we were definitely at that point.
I've had so many tests that I'm not sure I remember them all. I had several gastric emptying studies, several transit studies that look at how fast/slow food moves through the entire GI tract (those tests take a couple of days because they have to take pictures at regular intervals to trace the
location of the radioactive isotope and markers), barium swallow studies, a couple of colonoscopies, a sigmoidoscopy, anorectal manometry, and a colonic motility test. My small bowel transit time can be 24 hours or more (so painful). If you want me to explain how any of those tests work, just let me know.
I don't think that the colectomy accelerated the deterioration of my small bowel. I think my colon was in such bad shape that I really wasn't aware of how bad my small bowel really was. The motility in my small bowel is definitely deteriorating rather quickly, though.
I completely understand. I don't see myself having much of a future, either- it's so disappointing- I really wanted to travel, see the world, and go on mission trips. I have been riding horses since I was 7 (I'm now 24). Before things got really bad, I was studying equine science at Colorado State University. My goal was to complete graduate work in reproductive physiology and have a career in the breeding side of the horse industry. I had to give all of that up. I just finished my bachelor's degree in speech and hearing sciences a couple months ago. I am hoping to get a master's degree in prosthetics, but because of my health, the likelihood of that option is looking bleak. At this point, I don't have the stamina or the strength to successfully complete graduate work. So, right now, I'm thinking about
getting my teaching credentials to teach science or special education. Teachers get breaks for Thanksgiving, Christmas, and a couple months off for the summer, so I wouldn't be working year-round. How about
you? What do you do for education/career? Have you had to change careers to accommodate your health problems?
What kind of surgery would they have to do on your bladder? I'm so sorry to hear about
your recent hospital stays. Do they know why the catheter keeps getting infected? Are there different types of catheters, or a different
location they could try? Are they using the catheter for nutrition purposes? Have you found any supplements or medications that help your motility problems?
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...
July 2007: Diagnosed with colonic inertia at the Mayo Clinic
November 2007: Total colectomy
Post-op: Much better, but I still have chronic debilitating pain (small intestine dysmotility)
Currently trying to figure out what my physical abilities will allow me to do career-wise.