>Where do we go from here?


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.

I wonder.

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10 Responses to >Where do we go from here?

  1. Java says:

    >I'm a little bit behind the pack with the "welcome back" and other encouragements. I don't often read your blog, but I keep up with you through your comments on the other blogs we both read. I was very concerned about you when the trip to Portland had to be cancelled. I'm exceedingly glad you are recovering well. You have been on my mind. I didn't know the history, so I'm glad to read this post. Don't really have anything else encouraging to say. Seems the previous commenters have done that already. I'm just really glad you're back at home and back online. 🙂

  2. Lemuel says:

    >Sending my best wishes for recovery from the physical set backs and healing from the fear(s) that would detain you from life.

  3. anne marie says:

    >it takes time to become comfortable with oneself again (says the 20 year cancer survivor).one day at a time, sean…heal, grow in mind and spirit, lean on jeffrey WITHOUT guilt (superjeffrey WANTS to be there for you), and become whole again.to have come this far after all you have been through is a testament to survival…you have done it before and you can do it again!{{{{{hugs}}}}}

  4. wcs says:

    >It's an amazing and inspiring tale. And a little scary. And you're lucky to have the attitude you do and the husband you do.As for my visit, we will play it all by ear, and if it works out, great! But please don't feel any pressure and if you need to rest/hide/cocoon, you just say so and that will be that. No questions. Total understanding. OK? 🙂

  5. Ur-spo says:

    >the body has the power to heal if we trust it.I am sending your abdomen good thoughts and karma.

  6. >Sean, you have been through alot when it comes to your health and the way you are handling it is amazing. A couple of years ago, I went through a colonoscopy procedure and the doctor who was doing it almost ripped my intestines open. I was an inch away from having a Colostomy bag for the rest of my life. Thank god that didn't happen but I have been having intestinal problems ever since. After reading what you have been through, I admire you for how you are handling all of this and wish you the best in your recovery. You will be in my thoughts.

  7. A Lewis says:

    >You know, I've heard you recount this health story a time or two…and it always makes me feel like I'm back in school, college, in some sort of medical class….studing things I know little about….what an education! I see that Blobby and Larry have done a fine job of encouraging you….as we all do… to get better, to be healthy, to — somehow — jump to another level, a different place in your heart and mind. And that's a lesson that I'm having to learn right now as ell. In a spirit of unity and health, I wish us both wellness and WHOLENESS….in our minds and spirits.

  8. Ally says:

    >After reading your story, the lyrics "put one foot in front of the other, and soon you'll be walking out the door" came to mind. It's from Rudolf, I think.http://xmasfun.com/Lyrics.asp?ID=99Wishing you a continued recovery.

  9. Larry Ohio says:

    >Oh Sean, I feel for you, I do. May I share a similar story? I went through 22 months of suffering with ulcerative colitis in the early 90s. The doctors wanted to remove my colon but I was young and scared so I refused. I was on Prednisone of course, and Asacol (I'm sure you are familiar). I finally got fed up with being sick all the time and stopped the Asacol and weened myself off the steroids and guess what happened? I got better. And fast!! It was the Asacol that was keeping me sick. That shit should be banned.If making long-term plans stresses you out and causes health problems, then don't make any long-terms plans! Take things one day at a time. And for God sakes don't eat any popcorn or nuts!!!

  10. Blobby says:

    >It's a lot to deal with – but being a cancer survivor, I get where you're coming from.No offense, I'm amazed you could put the hospital/IV stuff out of your mind though it's been 9 years.If I had to go back into the hospital tomorrow, I'm not sure it would faze me as it was/is always at the back of my mind – 16 years later.As for the guilt – you have work through that, but in reality, he's still there. there is not guilt to be had.

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