Let’s Talk about Diseases

Published February 17, 2014 by administrator

In my first post of the year, I mentioned that my husband has Crohns Disease, and that he’s fighting a flare-up. This has nothing to do with books, writing, or any sort of literary process, but it’s my blog, damn it. I can talk about what I want. And this means something to me. It’s my life, something that I deal with on a daily basis, that affects every single decision we make, both as people and as a family.

There have been a lot of commercials lately that talk about Crohn’s Disease treatments. They talk about managing symptoms and regaining control of your life, but those commercials are essentially bullshit. This isn’t something that just goes away with a shot and some antibiotics. It’s a chronic illness that grows in intensity with every single flare-up.

It’s a disease that’s rapidly growing in awareness, but for those that don’t know what it is, let me explain:

“Crohn’s disease is a form of inflammatory bowel disease (IBD).
It usually affects the intestines, but may occur anywhere from the
mouth to the end of the rectum (anus). Ulcerative colitis is a related condition.”

– National Library of Medicine

It’s a term that’s used to cover a host of issues. Most of the time, they’re issues the doctors can’t explain. It’s an autoimmune disorder that causes the body to attack its own healthy tissue. But it can manifest literally anywhere in the GI system. Luckily – or unluckily, depending on how you look at it – we do have an explanation for Bill’s disease. His manifests in ulcerative colitis,  which is not even the tiniest bit amusing. He suffers from a series of ulcers that run around the entire lining of his colon. There’s inflammation. There’s blood loss. There’s pain, and constant issues that we won’t talk about.

And there’s not a damn thing I can do to fix it.

The 2013 holiday season was punctuated with doctor’s visits, funerals, and a host of other nastiness that brought on a ridiculous amount of stress. There was a week right there at the end of the year where I don’t think I had but seven hours of sleep. All week. Between the toddler, the teenager, and the husband being sick, I was running in twenty-five different directions. Luckily I have a boss that’s very understanding and ten years under my belt in that office, so I could afford to take the time.

December saw a rapid series of doctor’s visits for Bill, beginning with a trip to the hematologist on Friday and an iron infusion on Monday. Two days after Christmas, we were at the hospital for a blood transfusion because his hemoglobin simply wasn’t coming back. The GI doctor took him off of one of the two medications he takes to help manage his Crohn’s (which, by the way, comes with a fairly high risk of a rare sort of lymphoma… trading one set of issues for another, but I digress), and we still ended up back in the ER the morning after the transfusion.

He was losing blood. Oh, and he had a fever that was hanging out somewhere around 104°. We got up, took the toddler to her grandmother, and shot up the road to the neighboring city for treatment. Eight hours, two potassium pills, and a bag of fluids later, we were told that his hemoglobin was 8.9, he had low potassium that was probably caused by a medication, and that they wanted to keep him but they really didn’t know why. This wasn’t an easy fix. There wasn’t a diagnosis beyond “yup, you’re sick, but we don’t have a fucking clue why.” Great.

Ultimately we decided to come home. For days later, on New Year’s Eve, we were supposed to be in Raleigh with friends to celebrate the holiday, but we were back in the hospital. The fever wouldn’t go down. He had no energy. He was sick, and it scared the hell out of me. Of course, everyone else in three counties was sick and in the same ER. We waited. And waited. And waited.

And waited some more.

Yet again, the doctor didn’t have a clue what was going on. They checked on Saturday’s blood cultures, took urine samples, did the exams… the works. At one point the nurse started throwing around words like bacterial infection and sepsis. And I got scared. He doesn’t know it, but I did. I didn’t tell him how scared I was because he was sick and frightened, and I needed to be the strong one. When they started talking about sepsis, I had to take a mental step back. This…this was not good.

But the cultures were clear. No infection. Just a ridiculous fever and a hemoglobin level of 8.2. After four days. Still losing serious blood. So the ER doctor gave us a prescription for Omnicef (you know, one of those high-powered antibiotics they throw at things they don’t understand?), told him to keep drinking water and taking Tylenol, and sent us on our way.

Skip to a month later. Now.

Things are physically better, yes. Coming off the 6-MP helped a lot, as did whatever was in the miracle drug. The bathroom trips aren’t as often, the pain is less, and he has more energy. He’s making jokes and being annoying again. I never thought I’d hear myself say this, but that’s a good thing. When he stops being annoying, things are bad.

We have an appointment with Duke University’s IBD Department next month for a consultation/second opinion. At this point it’s not so much about putting him in remission as trying to find a way to save his colon. Yes, that’s a very real possibility… that by the time my husband turns 44 in July, he could no longer have a colon. Do I like this option? Hell no. I would prefer he be healthy AND whole, but if it takes removing the offending portion of his anatomy, then we’ll do it.

I’d much rather have him healthy than whole.

I say all this to make this point: Crohn’s Disease is not just a cop-out. It’s not just an excuse to use when you don’t want to eat at a certain restaurant or do something that everyone else wants to do. Irritable Bowel Disorders are not a patsy for antisocial behavior or a tool to manipulate people. It pisses me off to no end when people try to use GI issues as an excuse, and don’t even bother to do it consistently. It also pisses me off when people make snide comments about my family using them as an excuse.

CROHN’S DISEASE IS NOT AN EXCUSE. IT’S A WAY OF LIFE.

Crohn’s Disease means having to plan every outing around the location of the nearest working bathroom and the distance we can ride before a bathroom break is necessary.

It means cancelling plans for special occasions, sometimes at the last minute, due to sickness, or having to cut plans short due to fatigue, nausea, diarrhea, or a host of other issues.

It means denying him some of his favorite foods or passing on mine because they’re going to hurt him.

It means doctor’s visits, shots, needles, expensive and experimental medications, and the constant fear that it isn’t going to be enough.

It means having to explain to a ten-year-old that Daddy isn’t coming home tonight because he’s having a sleepover with the doctor.

It means blood transfusions, uncomfortable procedures, regular colonoscopies, and colostomy bags.

It means rearranging your whole life to manage symptoms, because there isn’t a cure.

But you know what? It doesn’t matter. None of that matters because this is my family we’re talking about. I love my husband, and I’d do absolutely anything possible to make sure this story has a happy ending. It may be a persistent disease, but we’re hard-headed people. We don’t give up very easily.

We aren’t going to let this beat us.

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4 comments on “Let’s Talk about Diseases

  • What medicines is your husband currently on if you dont mind me asking? I also have Crohn’s and have been battling it since I was 16 yrs old and I am 28 now. Has your husband tried the SCD diet (specific carb diet) or the paleo diet for autoimmune protocol?

    • He takes a cocktail of things. He has been on Humira for about four years now, and with this flare-up he has added 6-Mercaptopurine back to the rotation. His specialist also gave him a new steroid meant specifically for UC: Uceris. The 6-MP/Humira combination has been pretty much the root of the low hemoglobin levels as well. We’re essentially trading one set of symptoms for another here.

      As far as the diet goes, we’ve tried everything. We’ve done low-carb, low-dairy, low-fat, low-everything. I have a pair of cookbooks geared toward both Crohn’s and various other IBDs, and while they lessen the digestive pain, they don’t help with the other symptoms. I’ve used some of the SCD recipes, but he’s so picky that half the time he won’t eat them (It’s got to be a man thing!). We haven’t tried the paleo diet yet, but we’ve also got an appointment with Duke University next month, and that may be on the list of next steps. I’ll definitely check that one out. Thanks for mentioning it!

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