I am on the road to recovery. My body seems to be functioning as normally as it will and despite some lingering fatigue, I am up and around and back to work, doing chores and functioning at about 90%. As of Monday, I discontinued the twice daily needle-in-the-tummy Lovenox injections and now I just have to take Coumadin (a blood thinner) for the next couple of months (due to the blood clot I developed in my left calf while I was in the hospital) and monitor my blood levels. The good news is that I won’t be in and out of Xarelto lawsuits since the biopsy came back negative for Crohn’s Disease, so it seems to have been a very severe inflammation at my surgery spot that just gummed up the works and nothing more.
As a brief history for those not in the know, I was diagnosed with severe Ulcerative Colitis back in 1998. After 2 years of trying to get my flare-ups under control with oral meds and a few hospitalizations, I had surgery as a last resort in 2000, had a full colectomy (during which time I spent 3 months with an Ostemy which, thankfully, was not permanent) so I no longer have a colon/large intestine. My small intestine was stretched out to take over for the large intestine and a small “J-pouch” was created with the end of the small intestine and attached to my sphincter. This emulates the normal function of the large intestine, with some limits: without a colon, I no longer absorb as much water or nutrients as a person fully intact and I am more susceptible to “irregularity” to both extremes, which I try to avoid by eating a balanced diet and getting exercise and running to the Gastroenterologist anytime something seems “off.”. Otherwise, for the most part, I was “cured” but the change had a major impact on my life physically, socially and sexually.
As a result of this disease, I have had:
2 cases of Pouchitis, an infection at my surgery site not dissimilar to what I recently experienced, although neither resulted in total bowel blockage. (The first case in December of 2007 was first misdiagnosed as Stage 4 T-cell lymphoma.)
Numerous eye infections/inflammations, (Iritis or Irisitis) the current one being a nearly 2 year on-going case of Scleritis in my left eye which I keep under control with Prednisone and regular visits to my ophthalmologist.
Numerous bouts of Labrynthitis, an inner ear inflammation that causes intense vertigo for several days at a time.
It has been 9 years since I was hospitalized for anything, and although I have learned to except and cope with the periodic ailments that result from my defective genetics, I thought I had put hospital stays and IVs behind me, so this recent foray to the hospital really shook me up. It shook my confidence in my ability to self-monitor and maintain my health; it instilled in me a fear of making any long term vacation plans that might otherwise be disrupted by medical problems; it has upped my “home-bodiedness” and clinginess to Jeffrey and decreased my desire to socialize or interact with other people outside of my husband. Basically, it has made me afraid of myself.
Right now, I’m indulging that fear. I’m staying home, eating carefully, riding to and from work with Jeffrey and keeping any social plans to the barest minimum possible, save for Gay Bowling on Sundays and Facebooking with my circle of friends (and having dinner with a visiting fellow blogger I will be meeting for the first time very soon.) I hope, in time, this fear will wear off and I’ll return to my old self. I have bounced back so many times in the past it’s hard to really believe I won’t again, but something feels different this time. Like the last straw has been placed on the hay heap or the final bubble has burst and I wonder if I will ever again be able to wake up in the morning and not immediately check for something wrong…or be able to eat anything without fear or apprehension…or go to work without anxiety that something will happen during the day…or lose this resentment I have towards all the healthy people around me…or stop being angry that all my work at the gym has come to a complete halt again…or stop feeling guilty over what I put Jeffrey through because of my illness.
And I wonder if I will ever be able to trust my body again and starting enjoying my healthy days untainted by fear of sickness and pain.