Stage 1- Denial
I was diagnosed: Ulcerative Colitis- pancolitis- all over colitis- not the left side or the right side but everywhere. Finally, a name for the pain, the bleeding, the nausea. I was diagnosed which meant they could give me drugs, drugs that would solve my problem and relieve my pain. Soon, it would all be over. I began with mesalamine enemas, but they didn’t reach far enough into my colon to reduce the inflammation. Next, the same anti-inflammatory but in a more comfortable orifice. Then, I was given steroids- a magic drug that stopped the pain, stopped the bleeding and made me nuts. My face grew to be the size of a cantaloupe. I had a double chin and acne. I couldn’t stand to look in the mirror, as the face reflected there bore no resemblance to the woman I knew myself to be.
As I weaned myself off of the steroids, I put my hope in the next drug Colazol, and then the next drug Lialda, and then the next drug Remicade, and then the next drug Humira, and then Imuran. As I progressed through each of these drugs I maintained the belief that the next one would be the one, the answer. When my body reacted to the mouse proteins of Remicade with hyperventilation, I started to really worry. How could a 3-hour infusion not get rid of it? OK, Humira was the answer. A starter pack of 6 shots and then self-injections once every two weeks. Still problems? Increase the dosage to once a week. Still problems? Add in the Imuran at 50 mg a day.
Colonoscopy time
After the scheduled colonoscopy, my doctor asked if I wanted my husband in the room to hear the results. “Of course,” I said.
My husband and our two-year old daughter entered the room. The doctor seemed concerned as he spoke about there being no change in the state of ulceration. “Increase the dosage of Imuran to 100 mg,” he said, “Have you considered the possibility of surgery?”
Stage 2- Anger
Considered? Yes. But, Jesus, I’m 33 years old. I have a young daughter, husband, a rich, full life filled with friends. I love to eat. I love to drink. I love to dance and eat and sing and laugh. I can’t see myself enjoying any of this with a colostomy bag filled with crap hanging off of my belly button. How could I look at myself? How could my husband be attracted to me. How could I teach? Leave the house? Live? No, not an option. This is ridiculous! I’ve done nothing wrong. I struggled through my youth and dealt with the dramatics of a dysfunctional household while maintaining an A average. I somehow trudged through my teenage years with low self-esteem. I pulled myself together in my twenties, got myself through college with little assistance. I married a nice guy for love and not money. I became a teacher, no wait, a special education teacher. I work my ass off for my students and do whatever I know to do to help them achieve. I had a daughter who I care for beyond my own needs. I’ve wanted nothing more than to live my life responsibly. I ask for no shortcuts, I ask for no handouts. I’ve worked hard for everything I have and I don’t have that much. I’ve been grateful; I appreciate the little things. I don’t get manicures or pedicures. I barely treat myself to the finer things. All I want is to be able to take care of my daughter, to be a good wife, friend and teacher. And it’s me? Me, who gets to deal with this disgusting debilitating disease? I don’t deserve it. I don’t want it.
Stage 3- Bargaining
Fine. Maybe I’m supposed to learn something from this. Maybe I need to find some strength or insight or compassion. Perhaps it’s discipline. Fine. I’ll try this diet, restrict myself to meats and fruit. Then, maybe I can have my life back? Then, I can begin to live again without the looming threat of surgery? Acupuncture? Before I thought it was just for the granola folks. But, hey it’s worth a shot. Perhaps, I have been a little selfish, a little vain. Maybe, it’s about being more aware, more compassionate of others pain. I don’t know what its about, but I’ll do what I have to so I can live with this without pain.
Stage 4- Depression
What’s the point of trying to do anything about it? Nothing’s going to change. If I have surgery, there could be complications. I could wind up with a bag for the rest of my life. Or, I could have blockages, fistulas and a lifetime of doctors, surgeries and continued anxiety. If I don’t have the surgery, I could eat what I want and get sick all the time. If I go that route there’s no doubt I would eventually need surgery and by that point the inflammations could be so far gone that my body wouldn’t be strong enough to tolerate the internal changes. I could keep doing SCD and forget enjoying all of the meals I have come to love. Goodbye, risotto. Goodbye, crusty Italian bread from Sarcone’s with roasted peppers, basil and tomato with balsamic glaze. Goodbye, hoagies, cheesesteaks, ice cream sundaes. Is life even worth living without these foods? I wouldn’t ever be able to just go out and eat. None of the options are at all good ones. Now, I’m going to be the sickly, annoying person who drops out of every fun occasion. I must as well hang it up, throw on some sweatpants and sit on the couch. Leaving the house will just remind me of everything I can’t have, so what’s the point.
Stage 5- Acceptance
No, I’m not there. And if I’m honest with myself, I’m stuck in anger and depression. With some SCD setbacks, I’m having a whole lot of trouble finding my way out of being angry. It seems that no matter what I do, I’m still sick. I know I need to stick with the program, but I had a relapse. Last night, I thought I could handle a mango. I cramped up at 3am and spent the next half hour clutching my gut in the bathroom. In the morning, while trying to get my daughter ready, I was struck with pain again. Nausea and vomiting was soon to follow. I had to run out of the house to make it to work on time. Being sick left me weak and dehydrated. I got Gatorade and a Power Bar to get some energy back. So, the diet is off for now. I intend to wallow in misery for a few days. I’ll revisit acceptance on Sunday. Maybe at church…
-Written by Jen
