What Kind of Rose Blooms in October?

Today I had the amazing opportunity to meet and have lunch with author Wade Rouse (At Least in the City Someone Would Hear Me Scream, 2009) and his partner Gary. Working at a bookstore does have it perks to be sure!

Having lunch with these two hilarious men was an experience in its own, but what it has to do with colitis and gluten intolerance is that Wade and Gary have a close friend with colitis and a relative with Celiac disease. Once again proving my point that everyone knows someone with IBD and now I'll add Celiac and/or gluten intolerance.

Gary made the point that their female friend with colitis would go out to dinner with them, eat something obviously G.I. destructive, and then be horribly sick.

I've never met this woman, I don't even know her name, but I get her already. I know exactly why she did it. The desire to be normal and healthy is so strong that you can't help but time and time again do irrational things in order to maintain a pretense of health. The worst thing is that afterwards I'd always blame my sickness on something else e.g. food poisoning, over eating, fine ground razor blades mixed in the spice, you name it I've blamed it.

The crazy part about colitis is that I'm not an unusual case. At the time I was being treated by my Marquette gastrointerologist (2001-2003) I was the fourth case of colitis that he'd treated that had all followed the same pattern.

Four young woman ages 20-21. All with a severe colstridum difficili infections that within one year developed into chronic ulcerative colitis. Three of the four cases of chronic ulcerative colitis were unable to be controlled with medication and resulted in total colonectomy. Two of the three colonectomy patients had a colonectomy within two years of contracting the initial colstridum difficili infection. The remaining colonectomy patient (me) was able to hold onto her colon for three years. One of the four of us was able to gain control of her colitis with medication.

I never knew any of the other patients my gastrointerologist treated. But when I was first diagnosis I desperately wanted to meet them. I wanted to touch them, see that they were normal. I needed to know that I would be okay. I did briefly go searching for others, but all I found was a support group full of 40 year old + patients, mostly men. I didn't even attend the meeting and instead pretended I was lost.

During this time I did have one close friend with colitis- B.J. He'd been diagnosis with UC when he was 15 and had his colonectomy at 17. From the first day of my diagnosis he told me to get it taken out, so I could move on with my life. As I grew more sick I stopped talking to him, I didn't want his advise to be true. And he was a guy, he didn't understand me when I was healthy, how could he understand me when sick?

Now nine years later I want to connect with other women IBD patients. I want to touch them and laugh about bathroom habits that only a female IBD person gets. I'm not Joan of Arc and I don't want to be an Army of One. But I don't want to be part of a group of woman who lament their loss either.

I want laughter and joy.

And beauty.

And hope and healing.

And support for a cure. Lots of support for a cure.

Because now I'm going to have a child. I need to know that other woman have gone before me and it's all going to be okay.