In late March of 2007, we were getting ready to go on a cruise with some friends of ours. We were so excited! With stops in Cozumel, Grand Cayman, and Jamaica, we knew we were about to have the time of our lives. And we did. We partied our little tails off. It was so. much. fun. We soaked up the sun, played on the beach, ate delicious food, and even gambled lost money in the casino. But on the last day, Crohn’s Disease began to make a dreadful appearance. And it was mad this time. On the last day of our cruise, I was starting to see blood in my stool, and I was feeling panicked. Because when you have Crohn’s Disease or Ulcerative Colitis, you know what that means. I was making more frequent trips to the bathroom and feeling pain in my abdomen. I was absolutely, wholeheartedly making an effort to ignore it, of course, because I was on a cruise. To make matters worse, I was also menstruating that week (of course, why would I not be on my period while I’m on a cruise?) and I didn’t know it at the time, but that was the last period I would ever have.
That cruise lives in infamy in our little family for several reasons: 1) I started my period in a white skirt, on a scooter, in Cozumel and yes, it was embarrassing. There was no swimming in the ocean for me after that… I wasn’t about to be shark bait. 2.) While the guys went and gambled, me and my friend laid out on the sun deck on the first day and got absolutely fried. Tim couldn’t touch me the whole rest of the trip… My skin was SO inflamed. Which means there was no “funny business” if you catch my not-so-subtle drift. We were on a cruise and there was none of …that. Unbelievable. 3) This trip marked the last fun thing we did for a long time. Because shortly after we got home, I was hospitalized. And I would be basically bedridden for the next 2 years.
The next weekend, we moved from our apartment in Austin to a bigger and nicer apartment farther north, and closer to my parents’ house. We had gotten all packed up before the cruise, so we were ready to go when we got back. Luckily, we had hired movers because we both got the flu. Probably from the cruise! We were totally out of commission. We loved our new place. It was a nice roomy apartment with some great features that made it comfortable. We unpacked in a hurry and got settled, because we had friends coming into town for a visit. She was my best friend and I was so excited to meet her boyfriend,( now husband) because they had been together a while and I hadn’t gotten to know him yet. My health was steadily declining and that visit was totally ruined (for me) by the way that I felt. I tried really hard to keep it to myself because I didn’t want to ruin anybody’s fun, but all I really wanted to do was crawl into my bed and cry. I couldn’t though, because right after they left – Tim’s dad came to visit. We typically love to have guests in our home, so that just goes to show how awful I was feeling. That was pretty much the end of what I could handle. I couldn’t hide it anymore, and the last night they were here, I was in bed with a high fever. When Tim got home from the airport after he dropped them off, he tried bringing my temperature down by laying ice packs all around me in bed and nothing was helping. When my fever kept going up, instead of coming down, and reached 104 degrees, we started to panic. It was getting scary, so we left for the Emergency Room.
Over the course of the next few months, I was in and out of the hospital. Every time they would try to send me home, I’d end up running fevers again and have to go back. I was never home for more than a week at a time. This is where my story gets really ugly. I’ve obtained a copy of my medical records and I’ll be sorting through them to try and make sure I give an accurate picture of what happened. I don’t want to rely on just my memory, because honestly – it all gets a bit hazy. There were IV’s, PICC lines, NG Tubes, TPN, Chemotherapy, Surgeries… and a lot of drugs… A lot.
I’ve also been in touch with my favorite nurse. Yes, I had a favorite nurse. I was a regular there, and she made my hospital stays almost bearable. She remembers a lot about my case and has volunteered to help me get some of the details straight so I can make sure I tell the story right.
For right now though, I know exactly where I want to start. At the time, I was seeing a Gastroenterologist. He was okay, there wasn’t anything I particularly didn’t like about him, but I wasn’t over the moon about him either. I typically saw his P.A. who I liked a lot better. But when my hospitalizations started, so did the frustration. It felt like everything we were talking to him about, just confused him. I’ve done a lot of research and while reading over other Crohnies’ stories, I’ve found that everybody’s disease is different. That being said, I was what you call a “5%-er.” Basically, that means that all those risks that are written in the tiny print that never happen – happen to me. I was among a small percentage of patients whose symptoms were considered “atypical” of Crohn’s. While many of my symptoms were in fact normal and typical, it was the irregularities and the odd ways in which it manifested itself that were really throwing the doctors for a loop. They even second-guessed my diagnosis for a while. It became very frustrating and I remember the day that this doctor, who I’m sure was trying his best to help me, said: “I’ll be honest with you Leah… I don’t know how to help you any further. There’s nothing else I can do.”
I know what you’re thinking… how can a doctor say that? Isn’t it their job to fix and heal people? But I know that this was the best thing he could have done for me. To have the humility to say to a patient, that he didn’t have the knowledge he needed, is so amazing. To recognize that I needed more than he could give? I never liked him or respected him more, than I did in that moment. Terrified as I was, I knew that he was right. Without even knowing it, he saved my life with his next sentence. “I’m going to refer you to a Colo-Rectal Surgeon, named Dr. M.”
What kind of problems/frustrations have you had? If you have Crohn’s and you’ve experienced something similar – let me know! I’m curious if Crohn’s Disease is always this hard to deal with?