My Story How I Learned to

Stop Worrying and Love My Stoma

By: Kerry Keel kerrypgs@ro.com

My Crohn's Disease

I was diagnosed with Crohn's disease in 1992. I became sick when the majority of Crohnies do - in my early twenties. I had been sick five months, and, since I was seriously ill at diagnosis, I was immediately put on prednisone.

Very high does of prednisone helped, but it never put me in remission. After about seven months, three of them on 60mg of prednisone a day, a new gastroenterologist noticed that I was having severe psychological side effects. I was confused, I couldn't sleep for much more than three hours a night, and I was having problems controlling my temper during my mood swings. It was apparent that I had to come off the prednisone.

I started weaning off the prednisone and taking Asacol, a 5-ASA drug. But the Crohn's still didn't go into remission. I did everything I could think of: I got plenty of rest; I ate a good, healthy diet, even attempting to cut out foods that people kept telling me were making me sick; I took all my meds. Still the Crohn's got worse.

The Surgeries Begin

In April 1994, I noticed some rectal pain that got progressively severe. I was running fevers and even got faint often. I was almost positive that it was an abscess, but I was about to be baptized, and I didn't want to miss it. So I decided to want until after my baptism to go to the doctor. I was baptized the Saturday night before Easter - I almost passed out at the altar. Monday morning, I was in the emergency room in horrible pain.

That day I had surgery for a rectal abscess resulting from one of three fistulas. I had drainage tubes, which were supposed to be removed as soon as the abscesses healed. They never did, and I ended up carrying a round pillow every I went for nine months just so I could sit down. Flagyl sometimes heals fistulas, so I was immediately put on it.

The Asacol wasn't digesting anymore, and I was switched to Pentasa. Three months later, I was in the hospital again - more abscesses, more fistulas, and more drainage tubes. I was put on Imuran, and, when I didn't respond to it, my dosage was increased until I was on 100mg's a day. I was on four medications now, totaling 25 pills a day.

It had been two years since I'd been able to leave my house without worrying about where I would find a bathroom, when I would take my medication, what I'd be able to eat without getting too sick. The pain was constant, and I adjusted to it. What choice did I have? I still had to work to keep the insurance that was paying for all my medicine, doctor's visits, and surgeries. I often wondered if my life would always be that way, and I didn't know if I really wanted to keep trying if it would be.

Deciding on Ostomy Surgery

In late October, the rectal pain worsened. It was another abscess, which was draining on its own. But the surgeon was clear about what this meant: the abscesses and fistulas weren't going to stop. An ileostomy was inevitable. If I kept putting off the inevitable, there was no guarantee that the next fistula wouldn't be high in the colon, resulting in an emergency surgery and infection from which I might have trouble recovering.

I finally agreed to have the surgery after the holidays, with the understanding that if I got worse, the surgery would have to be done immediately. I had the obligatory second opinion, even a third to satisfy my family, but I knew those doctors would agree with mine before they did.

The best thing my surgeon's office did for me was have me talk to another ostomate. I realized that, although an ostomy was going to be an adjustment, it was my only chance to have a life again. I asked her all the scary questions. How much would it hurt? How hard was it to manage the ileostomy? Could people who didn't know me tell I had it? Before the surgery, I saw the ET nurse, and she told me all the mechanics of the ostomy and the pouch.

My Colon and I Part Ways

So, in January 1995, I went to Huntsville Hospital and had a proctocolectomy (removal of the rectum and colon). An ostomy was constructed from my terminal ileum. And the answers to all the scary questions?

· Yes, it did hurt. But, you know, after almost two years, I don't remember how bad the pain felt. I just remember thinking then that it hurt. I was surprised that my bottom didn't hurt as much after the proctocolectomy as it did with the abscesses. I had no trouble sitting up, although walking was a little weird for a couple of weeks.

· I refused to look at anyone else's ostomy before my surgery, so, when I first saw my ostomy, it freaked me out a little. It also freaked me out a little when I first saw it move from peristalsis, but it doesn't bother me at all now.

· The E.T. nurse made sure that I knew how to empty and change the pouch before I went home. I was still nervous the first few times I had to change it, and it took me a while to do it. Now I can change my pouch in three minutes (well, that is if you don't count the time it takes to get the supplies out and put them back up *grin*).

· When I first went home, I had horrible gas. My pouch would blow up like a balloon, and I just knew there was no way I was going to be able to hide THAT all my life. But the gas subsided after a couple of weeks, and my pouch was pretty unnoticeable after that. People who have met me since have not had any idea I have an ostomy, and they're usually surprised when I tell them.

My Life After Surgery

How's life now? Life is great. I am off all medication, and I feel good. I eat what I want, and I don't have to plan all my activities around my Crohn's disease. Before the surgery, I couldn't go more than 15 minutes away from home, and I never traveled alone. Now I take road trips all the time (the last one was to Missouri), and I take them alone!

My friends have been wonderful. They were supportive through my surgery, and they accept me now. I'm involved in the local United Ostomy Association chapter, and I'm always willing to explain ostomies to anyone who wants to listen.

Being a single female, one of my greatest fears before the surgery was if I'd ever date again, if anyone would accept my ostomy. I met a great guy before my surgery, and, about a year later, we started dating. He is proof that a good people exist - someone who cares about my thoughts and feelings rather than my misfortunate plumbing.

I'm glad I had my surgery. It's allowed me to be an independent person and have a life that's more than sickness and pain. Sure, since I have Crohn's disease, I may be sick again one day, but I'm glad to have the time I have right now.

Here's a couple of post-surgery pictures of me...

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