This isn't an easy post to write. In a sense, I feel like its the end of what was a hopeful chapter of blogs. Anyways, the fecal biotherapy treatment hasn't panned out, and I will be getting surgery soon.
This July I was so critically ill, I needed surgery. The one thing I hadn't tried yet (short of a bone marrow transplant) was fecal biotherapy, so I told the doctor (whom I had already consulted with) I was ready to go for it. This guy, who I originally met with in May has repeatedly left me hanging, failed to communicate, and showed no interest in helping me get better. I have been suffering this entire time, and can no longer deal with this pain. Even if I could still tolerate the pain, I can't put my life on hold any longer.
Even if I could start the fecal biotherapy tomorrow, I would have to be put on meds (that I'd likely need to drive to the states to purchase) for 3 entire weeks, then starting the fecal stuff, all the while crossing my fingers hoping it will actually work. I've been on the verge of going to the emergency room a handful of times already this fall, and I simply can't wait that long.
Being my procrastinating self I put off even calling the surgeons office until I hit the point where it literally felt like I needed my guts hacked out right then and there. Well, not that I haven't had that level or pain before, but its all the time now. The constant bloating and distention is affecting my breathing, I've lost function of my deep ab muscles, and getting out of the house for even an hour is a really big deal for me right now. It's no way to live. So I called the surgeons office first week of November, and had to wait until the 26th to even discuss the operation I needed asap.
It was a crappy 3 weeks. I felt like all of my fighting over these last 2 years was all for nothing. I felt like a fool for wasting so much time, money, and energy, to avoid a surgery that I was now getting. I felt like I was settling. I fell into one of my depressive cycles again. Motivation went out the window, I started binge eating, not getting out of bed, and gave up on doing physio, taking my supplements, etc. I was seriously dreading that appointment. I was scared to find out what my new reality was going to be.
I ended up receiving about the best possible news I could get though, and it won't be as bad. Like I was expecting, he said he would be removing my large bowel, terminal ileum, and any other sections of the small intestine that are too far gone. The open end of the small intestine will then be routed through a hole in my stomach and stool will pass into a colostomy bag attached to me. What I didn't expect was that he said he would leave my rectum intact, making it possible to re-attach the small intestine to the rectum in 6-12 months if everything heals properly, and then no more bag!
After being sick for 2 years, and suffering the last 6 months waiting for a procedure that may or may not work, 6 months with the bag is nothing. Especially considering the diseased tissues will be removed and the toilet will no longer be my ball and chain every day. This is not the outcome I was hoping for, but that's life. This also is NOT A CURE. We are simply removing the narrowed/scar tissued/inflamed/bloody stuff, giving me a chance to rest and heal again. I think of it as if 99% of my bodies resources are trying to heal these incurable tissues, and once they are gone, applying all of my knowledge of health and wellness will actually have a chance of doing something. Fecal therapy may still be a supplementary treatment option down the road.
I'm still not thrilled about losing my internal organs, but it feels good to have some closure. I finally know the end is in sight. Now that there's a plan in place, I'm back to working at the things I can control. I felt a lot less depressed after the meeting, ready to get back at it. Blogging, stretching, journaling, coaching, eating, meditating, whatever, all that stuff seemed worthwhile again. Though I'm in a much better head space than I was in November, I don't want anyone to think this will be a walk in the park. Its major surgery, and January is probably gonna hurt.
One more month of physical agony perhaps, but I'm going to try my best to look after myself and enjoy time with friends and family over the holidays. I feel extremely blessed to have so many loving, understandable people around me that support my decisions and make me feel safe. Thanks everyone.
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