Hi everyone, I have about 2 weeks to go until my next appointment with my motility doctor at UNC...and I have another question or two. Just a quick recap,
So far I have had:
-Hydrogen Breath Test
-Anorectal Manometry/emg/balloon expusion etc.
-several biofeedback sessions
Last I spoke with the doctor she said she wanted me to go to 3-4 biofeedback sessions before coming back to see her in 2 months. She said there were more tests to do but they didn't want to expose me to too much radiation at once, and she also wanted me to see the biofeedback therapist a couple of times because my coordination was slightly off and my pelvic floor was tense. I've been to biofeedback for 5 sessions so far, and I have another session before I go back to UNC. The therapist says I am doing well and have good coordination and just need to keep working on relaxing. I have been doing my best to also follow her eating advice and special stretches etc...and drinking more water and walking often, but the lack of bowel movements is still the same. I'm sort of frustrated because how am I even supposed to know if biofeedback is doing anything, if my colon is so slow that nothing moves down there anyway?!
So my questions are:
For those of you who have been through all of this (testing and everything), once you really got into the testing did it take a long time to go from diagnosis to deciding what your options were to actually DO something about it (surgery)? I feel I've been doing everything I have been told to do and I don't want to go back to the GI and have her say, well, try this or that...I want this thing out of me. I feel so toxic. When I spoke with her last and she told me to do some biofeedback, she said there were more tests they would do if my stomach issues continue, like checking the transit of my stomach/small bowel, but she didn't mention what else. I am hoping to explore the option of having surgery eventually, and sooner rather than later. I feel, and I hope I am right, that they would not have me going through all of this therapy and all of these tests if there was not a bigger plan in the future. Do you think I am right about that?
Also, I am sure because of some mild pelvic issues I would also have to have a defecography or something like that. If I didn't get ideal results from that I know it might affect my chances of having surgery with an ileorectal anastomosis...but surely they would still do SOMETHING for me right? I guess I am so afraid that I am going to go through all of this and they will say, sorry we can't do anything. Did your doctors give you different options for surgery? Hoodaya - did your doctors say they would try the anastomosis and if it didn't work they would just do an ileo or how did all of that work? I have been doing a lot of research on ostomies since finding out I had some pelvic issues, even though they said it was mild. So if nothing else could be done I would be open to considering it. I feel much more at peace with the idea but with my parents, that is a totally different issue. My Mom is afraid of surgery in general and I have been hoping to get her to come around to the idea of a subtotal colectomy if it becomes an option. But the word "bag" would absolutely make her faint.
I am graduating in less than 5 weeks and it is so hard to even think about my future when I have no idea what is going to happen with my bowels. I just want to get it figured out and fixed as soon as possible so I can have my life back, and I am really praying it does not have to take forever to do that. It has been so many years already and I am just exhausted.
Lastly, my biofeedback therapist had spent a good portion of our sessions giving me diet advice and telling me to try things like metamucil or benefiber. My family also gives the diet advice, and I know at my appointment with the motility doctor my mom is wanting to ask the doctor about that. (She wants to know if maybe I ate MORE, or at different times, or things like that...if that would somehow jumpstart or get my bowels moving) I know that it won't make any difference at all because I've been dealing with this for so long...if it was as simple as eating more apples, or eating more often during the day...believe me I would not be having this problem right now. Even my colonoscopy prep took 2 whole days, and I had to drink multiple preps, and there was STILL residue in my ascending colon. So I know the issue is deeper than just the way I am eating or my "stress" levels. I feel my GI doctor understands this because she is the one person who has not given me ANY diet advice whatsoever, and she even said, "let me guess, more fiber makes you feel worse?"...she told me to keep taking miralax and dulcolax until I saw her again to try to keep things moving as much as I could. So I guess my question is, in your experience, the GI/Motility doctors who deal with these things, do they have an understanding that if someone has colonic inertia, conservative changes like dietary things, really don't do anything? I am open to my mom asking her questions but I hope the doctor will help me out by explaining to her that slow transit is different from regular constipation. I think if my mom can just understand that, then it will be like a lightbulb going off and maybe my parents will begin to understand this is a bigger issue than just constipation and I need to get it fixed.
Thanks for reading this, I have been having these internal conversations with myself lately, rehearsing what I will say to my doctor and to my mom when I see them next...I can't seem to stop! I am just so desperate for them to really understand how much this has affected my life. I feel like a crazy person this week so I just had to come on here and get some of my questions out.
I hope you are all feeling well,