I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, August 10, 2012

Coming to Terms

Since my last post I have entered another flare-up, and I am refusing to go on Prednisone, the only thing I know would take my symptoms away.  (If you're wondering why, view my post titled "Dread of Pred".)  In addition to still being under a full dose of Remicade, Asacol, Rowasa, and all the supplements I take regularly, I have also started Wellbutrin, gone back on some strong probiotics, started taking aloe, and severely restricted my diet (no wheat, meat, dairy, eggs, processed foods, etc.).  In fact, the last few days I have been on pretty much a liquid diet.  I still have constant pain, bleeding, mucous, urgency, etc.  I am watching the inner lining of my colon come out in pieces every day and feeling helpless.  After a couple weeks of dealing with symptoms, not being able to eat much of anything, stressing about side-effects and trying to figure out which direction to take, I am finally coming to terms with something.

The only treatments I have heard of and not tried yet are Humira, LDN, and FT (look it up if you don't know what this is - very unpleasant).  All three of those have a somewhat limited success rate, and of the people who have seen improvement on them, I haven't heard of any who have achieved a solid, sustainable remission.  They all see another flare-up within months up to around a year and a half.  So either way I'm looking at more drugs, more symptoms, more side-effects, more dietary and lifestyle restrictions, and always "looking over my shoulder" since this disease is so sheisty.  I have had a lot of ups and downs over the years, but I have not achieved a solid remission since my disease progressed to severe pancolitis almost two years ago (since my disease spread to my whole colon, for those of you who are not familiar with the jargon).

After such a long roller-coaster ride, I am exhausted of all of it.  I know this blog is called "Fighting for It," but I have been fighting for a very long time, and I honestly don't see an end in sight.  I have decided to use the last of the fight I've got left to get through the trials and tribulations of surgery.  It is not a decision I have come to lightly or easily.  In fact it's one I have been pondering since my UC first got really bad, and with each new drug, method, or treatment that does not work, I have come closer and closer to accepting this as a final option.  It is a very personal and emotional decision to make - choosing to cut out a part of you - but a complete colectomy is the only way to be rid of UC for good, and I think at this point it is the path that makes the most sense.  And emotionally, I don't think I can handle much more.

A J-pouch surgery is the most popular surgical option today for people in my situation.  (The technical name for a J-pouch is ileoanal reservoir.)  During this surgery, they remove the entire colon and rectum ( a procedure called a proctocolectomy), then use some of the lower small intestine called the ileum to create a new small storage area - a pouch shaped like a "J" that takes the place of the rectum - and then they route this new pouch back through the usual poop-chute.  The whole process is illustrated in the diagram below:
(Courtesy of Eyvazzadeh & Reily Colon and Rectal Center)
In order to do this, the process requires two surgeries.  The "new plumbing" that they create in the first surgery takes a while to heal before it is able to be used, so until it does I will have a temporary ileostomy.  An ileostomy is where they take a part of the small intestine and bring it through the abdominal wall and attach it there so that waste exits through a hole (stoma) in my side and collects in an external bag.  It is the same thing as a colostomy bag except that it uses the small intestine (ileum) instead of the colon.  So I will have a poop bag on my side for about three months, and then I will go in for a second surgery to reverse the ileostomy and re-attach the new J-pouch for use.

I will certainly have a sort of "mourning" process as well as struggles (both physical and emotional) with the stoma, equipment, and recovery, but I have had UC for the majority of my life, and the idea of a life free of symptoms, drugs, side-effects, and worry about a disease is unimaginable.  So surgery it is!  Of course until that happens I will keep trying whatever I can get my hands on to find some relief, and if, by some miracle, I go into true remission, well then maybe I can postpone the surgery.  But either way it will happen eventually because I'm out of options.

I have an appointment with a UC specialist at UCSF to get a second opinion and make sure we've covered everything, and I have also requested a referral for a consult with a renowned colorectal surgeon.  This doesn't mean I'm giving up the fight; it just means I'm fighting smart.  Though I may have to change the subtitle of this blog from "Adventures of an Immunosupressed Teacher & Athlete" to "Adventures of a J-Poucher Athlete," I will continue to keep you posted.



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4 comments:

  1. Good luck! I had UC for 12 years - and was a teacher for 7 of those (4 were in college). I recently became a principal at the same time I began running out of options. 16 days ago I had a colectomy and because my disease was bad we opted for the three step procedure. I am happier and healthier than I have ever been - it's a hard decision, but my life is way better now!

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    Replies
    1. Thank you, Heather. It's always encouraging to hear from people who have had successful surgeries. It makes me more confident in my decision. At this point I am still sick and getting worse every day and so am getting impatient for the surgery. I still have to wait at least another month, I believe, before I can actually get on the operating table.... longest month of my life. :-/

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  2. Good luck! I had UC for 12 years - and was a teacher for 7 of those (4 were in college). I recently became a principal at the same time I began running out of options. 16 days ago I had a colectomy and because my disease was bad we opted for the three step procedure. I am happier and healthier than I have ever been - it's a hard decision, but my life is way better now!

    ReplyDelete
  3. My brother had to have his colon removed and ha a calostimy bag. It took him sometime to get use to it, but he's returning to his old self. He has chrons, and spent years on Remicade, and hymara. FInally this was his last option, its not ideal, but at least he is sympton free.

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