life with an ostomy. candid, not sugar-coated. empowered, not embarrassed.

Jul. 4, 2006

To admit or not to admit...

I mentioned several posts ago that I had an ileoscopy, but I never mentioned the results. ...drumroll please!

ahem. I have inflammation! According to my gastroenterologist, I have little ulcers about every five centimetres from my stoma to about 30 cm upstream. The reason for the scope was that in March and April, I was having fairly regular Crohn's pain. It was the most major sign of disease since having the ileostomy in 2002.

There was a period of about two weeks, just two years after the surgery where I had pain as well. The moment I definitively recognized it as Crohn's pain, I proceeded to lose it. I cried and screamed. And screamed and cried. It was my first introduction to the cruel fact that my health could disappear at any moment. After a full two years of bountiful health, where I discovered life without pain, anemia, weight fluctuation, diarrhea, fatigue, and appetite loss, it all of a sudden struck me how precarious that precious gift was.

And then I somehow got better.

Over time, I managed to digest that very real possibility that I could get sick again. But then these days I feel like I'm at some dangerous tipping point, where if I admit I could get sick, then I might as well admit I might get sick, and if I say that, plus I'm feeling pain and getting nausea and diarrhea at times (like tonight), I might as well say I might be getting sick, and heck if I say that, why don't I just start telling people in my life that I'm feeling like the Crohn's is coming back and hey I might want to start scaling back on all of these big responsibilities I've gotten myself into over these past years of healthfulness, because dammit they're sure weighing me down right now and I feel anxious and nervous and it sure is causing me grief. But then if I say that, why don't I just quit all the plans I have for myself, ask my mom to support me, and stay at home and watch movies all day and do arts and crafts?

I went through the trauma of Crohn's once before; it was my entire adolesence. Only then, I would never have used such a victimizing and loathful word. Trauma? Like what was I? Some kind of pitiful schmuck with tubes up my nose and no personality? Fuck that noise! Life was good, and Crohn's disease was just this bitch I had to deal with on the side. It was really no big deal. The drugs, tests, visits to the doctors were all novelties, in a way.

On the other side of my adoloscence, looking back, it seems more clear to me the difference it would have made if I had been healthy. The patterns of Crohn's, it's slow progression, it's severe attacks, all steered my life in a way that I don't regret or detest, but I just don't want to have to deal with it again. Because I know what's coming.

And now I feel trapped, not wanting to be fatalistic and play the victim, but also not wanting to foolishly ignore my need to slow down and take care of myself. It's so hard to let go of the approach to life that I adopted shortly after the ileostomy surgery, which was: Go! Do it! Yeah! whoopee! Look at what I can do! yay me! Now it just feels like work, and it feels overwhelming. The sensible thing for me to do over the next little while it seems is to extract myself from that way of thinking. Despite still having all these plans, dreams, and big ideas, I need to think small and prioritize my well-being. The last thing I want to be is a victim, so now I guess it's time to be a hero... and rescue myself.


Anonymous Anonymous said...

Please check into low dose naltrexone for the treatment of Crohn's. It seems VERY promising.

11:57 a.m., July 06, 2006

Blogger Torild said...

Sorry to hear that the results of the ileoscopy was not good. I know how it feels to live on "borrowed time", so to speak - never knowing when illness will strike again. I had UC, now the UC is gone (and hopefully I don't have Crohns instead of UC), but I also have PSC (Primary Sclerosing Cholangitis). I feel for you, truly I do - but you are not alone and your thoughts are not crazy. Stay strong!

7:51 a.m., July 07, 2006

Anonymous greg said...

Well, if I simply place the word 'cancer' in the spot of 'Crohn's' in your post I find myself hurled back to the period of my life shortly after I was told I had cancer. In short, upheavel of my life. My friends and family helped tons (and I'm fiercely independent) and I leaned on them. Chiefly I listened to my body, allowed myself to realise all the risk, gave myself some 'poor me' time, and basically got on with it. I tell everyone its all about mindset and the support net. I hope you are blessed with a support net that rivals or surpasses mine. Cancer patients live in fear of its return, I assume much like your situation with Crohn's. I really feel for you. You are in my thoughts....

9:28 a.m., July 17, 2006


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