Sarah - Thank you so much for the information, and for telling me about your experience. I know an ileo won't be a cure (nothing will, unfortunately), but I do feel that it will make a big difference with the pain, bloating/distention, and nausea. Eating will always be a challenge, but if an ileo will make life even a little easier and allow me have a little bit of a life, I am all for it. If you come across any articles, that would be great, but I know you have a lot going on yourself...how are you feeling? Any updates or news from your doctors?
My gastroenterologist had a cancellation, so I was able to see him on Thursday. Given that biofeedback made me worse, and there are no medications, he told me to go ahead and make another appointment at Mayo. He is a wonderful doctor, and he knows that Mayo is where I need to go, as I am not a normal case. He will gladly write Dr. Camilleri update letters and send all of my current information and test results. My parents and I have to discuss when a trip can happen, but hopefully it won't be too long.
Hodaya - I am so glad to hear that you are feeling so much better! I understand that the chances that they will remove my rectum are low, but I really hope they will because my rectum goes far beyond being non-functional. It is very painful, to the point where I have times when I cannot walk or stand upright. When I wake up in the morning, the first thing I feel are the rectal spasms, and they have even woken me up on occasion. I do not, under and circumstance, want a loop ileo. I want the connection between my small intestine and rectum to be completely severed because my body does not tolerate anything inserted rectally, like an enema, for example. My heart rate goes through the roof, I alternate between sweats and chills, extreme nausea, and near-vomiting. I know they won't remove my rectum and do an end ileo in the same surgery because they will want to give me the option of being reconnected. I just want an end ileo now, and hopefully they will agree to remove my rectum later.
Emotionally, I think I am beyond ready for it. I have done my research, and I have been around ostomies. I have hit the point where an ileo could not possibly be worse than how I feel now. It's my parents that need to emotionally get ready for this!
Leslie - I am so sorry to hear of this new development. Praying for you, and please keep us posted!
Marisa - My heart breaks for you and your family...so many prayers.
Gilda - I would have your pelvic floor checked, but as far as treating any dysfunction, biofeedback only works in less than 50% of cases. Your doctors may require that you try a round before they do anything, but it does sound like an ileo would give you some freedom. Another thing you might try is grapefruit seed extract (health food stores will have it). It will wipe out any intestinal yeast infection or bacterial overgrowth without the additional side effects that prescription drugs can cause. Get it in tablet form (they're little), and you can take one before breakfast, lunch, and dinner, although you may want to start at a low dose and work your way up. You may feel kind of icky initially as the yeast and bacteria are killed off, but that will pass.
Love and prayers to you all...hope everyone has a great weekend!
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.