My Journey with Chronic Illness

This is the story I’ve never written down, much less published, because it’s not really my story. It’s my husband’s. But, it became my story when we met in 1992, and it has continued to be my story in our almost twenty-five years of marriage. Today is the first time I’ve written it all down because…it needs to be heard.

First, there are illnesses that, dare I say, are “fashionable” to talk about. How many ads we have seen for medicines that treat heart disease or multiple kinds of cancers? I would say many. I understand this. There are many people who suffer and who have died from these diseases. But, if we have lived any length of time, we know there are many more diseases than just these two. My husband has dealt with one of these for most of his adult life. Crohn’s Disease. I’m going to define this disease, and its cousin, ulcerative colitis, because they are so similar, and the drugs used to treat them are similar. First, Crohn’s Disease—a chronic, inflammatory bowel disease that affects the lining of the digestive tract. Now, ulcerative colitis—a chronic inflammatory bowel disease that causes inflammation in the digestive tract. As you can see, they are similar, only having a one or two-word difference in their definitions. In fact, we later found out that my husband’s diagnosis was indeterminate between the two.

But, back to the diseases themselves. They are both bowel diseases. Diseases that affect elimination. Who wants to talk about that? There are many people though who suffer—1.6 million with 6 to 15 new cases per 100,000 people diagnosed each year. And there is no cure. Yes, there are drugs that can control it. Yes, there are surgeries that can help. But, all of these have life changing consequences. I know this because I’ve lived it.

Anyway, when I met my husband in 1992, he was recovering from a surgery. I was struck by his kind manner, his twinkling brown eyes, and his sense of humor. The rest only became relevant as we started dating. The times he couldn’t go anywhere because of the pain. The shame he felt when he had an accident. The constant hunger from the steroids he took. And so many more side effects from the medications and effects from the disease itself. We had good times though. Times when he was in remission and we could be normal. He asked me to marry him almost eight months later. I suppose as a 27-year-old, I should have known what I was facing, but I loved him and wanted to marry him. We married almost thirteen months after he proposed.

When I turned thirty the following year, we started to consider having a child. He had managed to come off his medications, and the doctors said it would be the best time to try. He had been on them for so long though, the odds weren’t high we would be able to conceive—one of the side effects of the medications I spoke of earlier. We beat them though. Or maybe I should say God had a hand in it. 😉 I got pregnant and at the end of 1996, we had our first son.

The first days of new parenthood were wonderful, exhausting, exhilarating, and every superlative adjective in-between. But, as we moved several months into our son’s first year, my husband had a flare and came out of remission. I can hardly describe the pain. I know it was excruciating. There was so much he wanted to do, but couldn’t. They tried several combinations of the meds. They did a colonoscopy to see where the lesions were. But, nothing helped. My husband was stoic. He worked as much as he could. He didn’t want it said of him that he complained too much of not feeling well. That was something one of his family members did constantly. Finally, though, he couldn’t work anymore. Something had to be done. The doctor decided on surgery, and we met with a surgeon. They were going to open him up and see how much damage there was. A temporary colostomy might have to be done, but he was optimistic it could be reversed. I particularly remember the surgeon asking what his pain level was. He said it was a four or five on a scale of ten. (This would come into play later.)

The following day he went into surgery. I was anticipating a surgery of no more than two hours so when it passed that time, I got nervous. One of the nurses in the operating room called out to the waiting room. The damage was more extensive than they had thought. (This surgeon later said to my husband he wouldn’t wait to take him back to surgery again. Turns out he has a very high pain tolerance.) They didn’t know how long it would be. The surgeon came out over six hours later. Something bad had happened. The damage to his colon and rectum had been extensive. They had removed both and put in an ileostomy. He had coded on the table, and they had restarted his heart. My heart almost stopped. Here I was an almost 32-year-old woman with an almost 1-year-old son, and I had come this close to being a widow. Of course, I was grateful they had saved him, but at that moment, I didn’t realize how permanent and life-changing this would be for him in the years to come.

He went home from the hospital a week later, and our adjustments began. He had received counsel from an ostomy nurse about what to expect, but a lot of the adjustments were going to involve him seeing what worked and what didn’t. Here is the definition. “An ileostomy is an opening in the belly (abdominal wall) that’s made during surgery. The end of the ileum (The lowest part of the small intestine) is brought through this opening to form a stoma, usually on the lower right side of the abdomen.” (Source, cancer.org) I won’t get any more detailed than that. Just know that it was a permanent change in body image for him and a change that both of us would need to walk through. We went to one support group meeting, but weren’t able to gain a whole lot of insight since we were the only ones there who weren’t retired and who had a young child at home. After that, he got most of his information from the Internet.

Not only were we dealing with physical adjustments, we were also dealing with mental and emotional adjustments. This path was hard, and there was no one in our lives we could really talk with about it. No one who understood when I came to a church function alone. So much depression and shame. Why couldn’t our lives be normal? We could see our abnormal clearly. Did anyone else have an abnormal?

Things gradually evened out though. We had our second son, and our abnormal became normal. Life was good. But, in the first years of the twenty-first century, my husband started having problems with the ostomy. He had to go to the hospital again. What? I thought we were done with the hospital. Turns out we weren’t. In fact, there have been many hospital stays over the past nineteen years. 2001. 2003. 2005. 2010. 2015. 2016. All of these stays didn’t directly involve the ostomy, but I had to wonder if some of them involved his destroyed immune system. Because that was the other life-changing thing the doctor had told us to expect. He had been on the meds for his Crohn’s for so long; he would more than likely catch everything that came down the pike. He did. If there was something going around at his office, he would usually be the first one to catch it.

In the midst of all this, we moved. Several times. Employers have a hard time understanding the reality of a chronic illness and everything that comes with it. He was able to gain valuable experience with each position though which was a plus. But, we still had very few people in our lives we could trust with our “abnormal” normal. We had left the church, and I felt so far away from God.

Finally, we moved to our current state and found our current church. I’ve written about this before. It took us a long time to trust this community, and at times, I still don’t. We’ve been on the recipient end of help instead of the giving end, and it’s made us feel unworthy. How could we not? The shame involved. The low times. The hard times.  We had been shunned by former churches, and I keep feeling the other shoe is about to drop here. We’ve even chosen not to do certain things because we don’t feel capable. Listen, we know in our head that God does love us unconditionally, but the heart is another story. It can be very hard to live into, and it’s even harder to not think we won’t be shunned again. But, I do my best each and every day to live into the grace of God and not in shame and loathing from Satan.

We’re on the other end of raising our children now as I’ve written about before. My husband is in a stable job that is a good fit, and we’re hopeful he’ll be able to stay there until he retires. I’m in a place where I can write, and we’re in a place where we can contribute. It is my hope, by laying my heart bare, that people can have a greater understanding of our story and why we react the way we do as we live our “abnormal” normal.

Have a great day, everyone!

 

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