I too lost track of time to answer your post. I have been going through "digestive" issues for most of my life but didn't start going to an actual GI doctor until about
5 years ago. The 1st, and what became the focus issue was the esophagus -- Barret's, Ulcer and some other things that I've since forgotten in my old age
I was put on the gastroparesis diet, they stretched the esophagus, given medications and was monitored. Over the next couple years, there is no longer evidence of the major issues other that I have a very obnoxious pressure/pain pretty central in my chest. During that time, they had me on most every medication possible for what they passed off as "chronic constipation" and decided that if they could get it taken care of, the esophagus would take care of itself (proper digestion and elimination). They had all kinds of disgusting tests done and found the pelvic floor problems. I swear I had reactions to the barium used in the tests (after 4 days of vomiting, sweating and being absolutely miserable, finally passed what seemed to ME to be solid concrete). They sent me to OT/physical therapy with biofeedback where it was determined nothing was working to get my bowels to work properly! --> DUH, but I did do my due diligence! I was referred to a surgeon for the pelvic floor issues. The surgeon said the success rate for that particular surgery is absurdly low. They also wanted me to go to a therapist to learn how to swallow differently. I was worn out at that point with all the tests and whatnot so I passed. I think it offended the doctor so she said there was nothing more that could be done, so we'll just check back in a year. That was about
8 months ago!!
My primary doctor read the report and had a fit... referred me to a different GI. The new doctor is way more proactive and agreed that it is not something that should be ignored. He stretched the esophagus again and had me try Linzess and Amitiza one last time. He thought I might have to have a bowel resection and referred me to a 2nd surgeon. She agreed that the 1st surgery recommended would not be appropriate but neither would a resection. She set up the sitz-marker test and immediately reiterated the ileostomy was our only option. THAT was less that 5 months ago!
As we speak, I'm still glad I had the surgery BUT knowing what I know now, wish I would have probed more about
why it was decided to do the loop (even at that time she said that with the pelvic floor problems, it would make no sense to do a take down) and leave the large intestine/bowel in place, simply bypass it. I am having horrible cramping and pain, pressure and gas trying to pass through the "old/normal" route, bloated and frustrated. From what I hear and read, it's rare for them to leave the bowel and having the inactive part of the stoma for a long time is not a good idea. I think Karen/Seashell nailed it with her information.
That was my very longwinded way of saying PLEASE DON'T wait as long as I did for them to take you seriously. I understand that a lot of doctors and lay people think crones, UC and IBD is a bigger issue and warrants ostomies more. I don't take anything away from those diseases and appreciate the horrible pain and horrible quality of life they endure. BUT, I'm sure they would change their minds if they knew what it feels like to be so constipated it takes days, even weeks to have a bowel movement. That alone, doesn't make our QoA great. On top of that, imagine what the constant exposure our system has to the toxins (possible carcinogens) because we don't empty--> yuck!! I and certain that my pelvic floor problems are because of years of wretched straining and all that goes with it.
I know you're young and perhaps you want to avoid the ostomy appliance, or that may be the doctors' assumption. I would much rather have my stoma that go through all that crap, or lack thereof... pardon the pun
From going to the Ostomy Support group, it was so nice to see all ages, lifestyles and conditions represented. The general consensus was no one will even know you have an ostomy unless you tell them. Of course it's something to be considered with a spouse or partner (intimacy) but YOUR health is more important.
PLEASE PLEASE let me know how it goes for you, ok?