Hi again everyone,
The weeks have dragged by since my tests at unc and my diagnosis of colonic inertia (all markers were still left, and all spread out) and mild pelvic floor dyssynergia. My doctor referred me to a physical therapy center to try some biofeedback and then I am going back to UNC in late April for another appointment with my GI. I decided to go along with everything and try the biofeedback, sort of as a way to keep everyone happy and also as a way to leave no stone unturned. My GI doctor has mentioned surgery to me, particularly on the occasions when I asked about "long-term" options. However, she said that my manometry showed some slight pfd - she said some of the parts of the test were perfect, and some were a little off. I had normal resting pressures, great sensation/nerves etc, but that the muscles were slightly un-coordinated when I beared down. I have never really had much of an issue getting anything out, but I think that since I so rarely have a bowel movement without assistance from laxatives now, the muscles sort of forgot how to work exactly the right way. She said if I walked into her office and said "I'm done just give me the surgery"...that I would have to do some kind of therapy to get the pelvic floor back on track anyways...so I am biting the bullet and doing it.
Anyways, I just had my first biofeedback appointment today. I have mixed feelings about it but I'm going to keep going for the recommended # of sessions (3-4) until my next appointment at UNC. The therapist didn't use the "equipment" today since it was the first appointment, but she did an exam both internal and external and checked out all my muscles and had me push/pull in/etc. She said I am doing everything well but having some trouble relaxing and pushing at the same times, but she said it was very fixable and she has no doubts about that.
The thing that sort of irritated me was the other advice spent about half of the appointment giving me about constipation. Telling me to eat MORE, to eat lots of fiber, exercise, the usual. I totally get how this would help your average joe who is having some constipation issues. but after dealing with this my whole life and trying everything imaginable under the sun...I kept having to bite my tongue. I didn't want to argue with her or seem defensive because I know that would not work out in my favor. She told me to try a mixture of prune juice, apple sauce, and oat bran. That would be like setting off a bomb in my belly! I already eat as much as I can and I know eating several small meals throughout the day is ideal but after all these years I've found that eating as little as possible throughout the day is the only way I can even TRY to function and get done what I need to. I'm in my last semester of college and just trying to keep my head down and focus on finishing. I will of course take her advice and drink even more water and try to exercise more, but as far as eating I feel I know what foods "work" for me right now (as in, make me feel LEAST discomfort...all food makes me uncomfortable though)
I was wondering if anyone else has been to biofeedback and if they also got similar diet advice. My GI understood when I told her fiber makes me feel worse, and advised me in the meantime to take 4 doses of miralax a day and dulcolax when needed. It is not a long-term plan but she said I need to do what I can to keep things moving as much as possible until I see her again. I am wondering if the physical therapist just doesn't know or understand what CI is, and is just taught to do the therapy and give advice for normal, run-of-the mill constipation...which would work for most people but I think when you have CI isn't it better to stick to a low-residue, low fiber diet?
My Mom will be coming with me to my next appointment and she asked me if she could ask the doctor some questions. I said sure, what questions? And she said she wants to ask about diet, like if I ate more or at different times, or if i ate every hour etc...would that "stimulate" my digestion....she doesn't really understand the whole "inertia" thing either. That is something I also struggle with, is trying to explain it to my family. I have brought up surgery but they shut down and don't want to talk about it. My mom has told me I will have to find a way to live with it, and that I can just buy looser clothes and deal with it and "eventually you will poop"...but I told her the other day that, that is not good enough. I don't want to treat the symptoms anymore - I want to fix the problem. I will follow the doctors orders but if I see her again and she thinks I could be a good surgery candidate, I would like to look into it. She said OK, I think partly to end the conversation, and partly because I think (and hope) she is realizing that I am an adult and it needs to me my decision. I told my mom at some point (i'm 24 years old) it has to be MY choice, because it is my body and I only get one life. I don't get to try again a second time. It is easy for her to tell me to deal with it, because her life goes on. I'm the one who has to wake up feeling bad every day, and base every decision on my bowels. It is no way to live and I know you all know where I am coming from here.
I have just been so frustrated, exhausted, sad, and hopeless feeling. It is very hard not knowing what to do and having to wait for the next doctor appointment, feeling like my whole life is hinging on this biofeedback and my next appointment at UNC...I just want to know what my options will be. Right now I am just trying to keep going through the motions so I can graduate. Thanks to anyone who reads this, and please know that coming here and reading all of your stories is very inspiring and helps me get through the days when I feel terrible.