About

(Reposted from my journal at the Inspire.com support community: http://www.inspire.com/DuckyChick/journal/my-first-post-15/)

It all started, well, years ago, really. I had all kinds of intestinal difficulties that were sort of low-level and managed with over the counter meds, such as problems with digestion and frequent diarrhea. In 2006 it all came to a head when I ended up unable to keep any solid foods in, had constant pain and diarrhea, and spent weeks in bed too weak to do anything but lie there. Finally I checked into the hospital, and after being tested for everything under the sun, the doctors finally decided on a wobbly sort-of dx “maybe Crohn’s, probably Ulcerative Colitis, it’s difficult to tell how much of the intestine is involved.” Great.

But still, we had the beginning of a path to follow, and we did. Starting with Remicade, Asacol, and 6MP, I travelled the road of every biologic and colon medicine under the sun, plus Prednisone whenever I had flare ups (which was once or twice a year like clockwork). I was in constant pain and had (was supposed to) to severely restrict my diet (which I confess I am terrible at due to compulsive eating). I haven’t lived even close to a normal life since then, finding myself sick all the time, and in bed at least one spell a year.

Finally, last December I had the worst flare up I’ve ever suffered. Starting around Christmas time, I could no longer eat anything solid, any fruits, vegetables, or higher bulk foods. I became weak and sick very quickly and ended up back in bed, unable to function at all. I was hoping a course of Prednisone would once again do the trick. But after weeks of a 30 mg dose, I was only getting worse. In March, my blood sugar shot up to over 600, and I was hospitalized for Kedoacidosis due to my lowered immune system and a severely infected bed sore. At this point my local GI did the usual series of tests (colonoscopy, cat scan, etc.), and we saw that my colon had finally just had it. I was starting to have dangerous polyps that were quickly moving toward a possibly cancerous state (dysplasia), and surgery, which I had resisted with all of my being from day one of my dx, was looking like the only remaining option since I had gone through all the meds.

I went home after a week for that hospitalization with a plan to have surgery (with the amazing Dr. Neil Hyman of Fletcher Allen Medical Center in Vermont) in June, but that wasn’t to be. Despite all the hospital treatment, extra strong steroids and a course of massive antibiotics, I only grew more sick, until I was covered with terrible sores and bruises that wouldn’t heal and I started having trouble breathing. I was once again admitted to the local hospital until they could get me stabilized, then I was transferred by ambulance to Fletcher Allen Hospital (the best place in the world, imo). I don’t remember any of this, to tell you the truth. I was so drugged up for the pain and out of it, apparently I had my surgery and several days of recovery before I really woke up.

I had a subtotal colectomy with ileostomy on 5/7/13. I had a few problems in the hospital, mostly because I have minor issues with my heart. I also struggled (and still do) with food and nutrition. I ended up having an extended stay of about two weeks, especially after winding up back in the ICU and cardiac unit for almost a week. During that time they hesitated to let me go home because of my eating struggles as well. I have no problem with a liquid and soft diet because that’s pretty much all I’ve lived on for the past year. But now I really need to start slowly advancing my diet so I can get healthy again, while still working to lose weight. (I’m still very overweight, even after losing over 60 pounds due to illness and surgery.) Ultimately, my goal is to have a J-pouch reversal (I think), but I need to be in much better shape to be a good candidate.

Now I’m home, and sometimes it feels like a pressure cooker. My entire family is involved in my care, helping with the wound especially, since I can’t see it well enough to care for it. I’ve had a couple of home health visits, but since I have managed care Medicaid, I only get a few of those, and they only give some cursory instruction on things. I’m very tired and depressed, and everything just feels like too much on many days. I know intellectually that this feeling will pass as I heal, and eventually whether I get the ileostomy reversed or not that this surgery will improve my quality of life exponentially, it still feels like I made a massive mistake and really did something horrible to my body. It doesn’t help that I have terrible clinical depression (technically bipolar II) and anxiety that make dealing even more difficult.

I just have to hold on, keep meditating, and have patience with myself and the turning of the universe. Things will keep getting better! Sometimes I don’t believe it right now, but as AA people say, “Fake it until you make it!”