Monthly Archives: May 2016

Hypochondriac Humor

Crohn's, Health

If someone asked me to name the scene a movie that most resonated with me, this would be it. My name is Bob and I am a hypochondriac. My gravestone will read, “I told you I was sick.”

So of course the fact that I was suffering from pain and bloating over the weekend, and that the NP thought I needed a CT scan to check for an obstruction sent me on a wild spiral of anxiety.  Nevermind that I’ve had all the symptoms before and it proved to be nothing more than constipation, I convinced myself that I had a huge tumor lurking in my intestines and that I should stop buying green bananas.

At one time in my life hypochondria almost took over my life. Every little lump or sore was a death sentence that I would obsess over relentlessly. I obsessed over the possibility that I was insane because I was obsessing so much. Finally I went to a shrink and he put me on Celexa, an anti-anxiety and anti-depression medication. I got almost instant relief. I probably started dangerously ignoring symptoms. But alas the drug had some unpleasant side effects. Imagine that. So a few months ago I decided to wean myself off of it, which I did over a period of a couple of months. Until now the I’ve not been obsessing about my health. But Crohn’s and gut problems always get me worked up so I was spinning down the rabbit hole of paranoia for a few days.

The scan came back clean. You might have seen me skipping down 4th Avenue yesterday afternoon.

I’m not whining. Am I?

Crohn's, Health

doubtIt dawns on me these recent posts on Crohn’s might come off as whining. Poor me, I have a chronic condition and it’s going to cost me a lot of money to treat it. If that’s the impression I’ve given, I apologize.

I don’t have anything to whine about really. My Crohn’s is about as mild a case as you can get. I’ve never had surgery or even been hospitalized for it. Sure I’ve crapped in my pants a few times and have gone through some miserable periods, but all you  need to do is follow the Crohn’s hashtag on Twitter and you will realize I’m lucky. You can die from this. Young people are hospitalized and having colostomies and finding themselves unable to work. Not eating for days because it causes too much pain. So really I don’t have much to complain about. I should be thankful.

I have a couple of reasons to write about my Crohn’s disease adventures. One is that I need something meaningful to write here, and although talking about one’s shit is pretty personal, it gives me the opportunity to talk about things beyond what I had for dinner and what TV I’m watching. The other is that I hope I can help others with Crohn’s by providing information and telling my story.

I won’t be writing exclusively about Crohn’s here. I’ll probably still write about TV and what I had for dinner, review a book or movie, post some artwork and keep you posted about my battle with the bunnies who use my garden as a smogasbord.

Can I even afford to go on Humira for Crohn’s?

Crohn's, Health

First, I’ve created an aggregated feed of Crohn’s disease on social media. Check it out!

My last post I talked about the resurgence of my Crohn’s disease. After three years of remission it’s suddenly returned and I’ve been dealing with the symptoms a couple of months now. After the usual period in which I just hope that it will go away, I finally made an appointment with the doc. My usual GI guy wasn’t available so I saw a nurse practitioner. In forty-five years I don’t think I’ve ever had someone sit down and talk to me about my Crohn’s as long and thoroughly as she did. I recommend going to nurse practitioners, because they will take the time to listen to you. My GI doc is a really nice guy, but he always seems like he’s in a rush to get out of the room.

Last night I was calculating how much Humira would cost. I came up with $8000 a year. But that’s not right. The direction of this post has changed since I started writing it. I emailed James Romeo, the agent that handles my supplemental Medicare insurance. He got back to me within the hour and walked me through the coverage and the dreaded “donut hole” in Medicare prescription coverage. I’ll try to explain that in a future post. I already had a pretty good handle on that, but our conversation revealed that I’d made a mistake when I was calculating the cost in my head. Hell, it would only cost around $4000 a year. Whoopee! James says it’s the most expensive medication he’s run across. Do I get a prize?

I suppose you could make the argument that the folks at AbbVie spent a lot of money on R&D to develop Humira and they need to get that back and make a profit. I’m not too worried about them, Humira sales grossed $14 billion last year. That’s with a ‘b’.

We have saved for retirement and I thought we were going to be in great shape financially, but that number could mean we wouldn’t be able to do all the things we’ve been looking forward to.

One of the things the NP said was  that continuing without more aggressive treatment might result in requiring surgery. When I think about it, from my standpoint surgery would be more cost effective than the drug. With the Medicare coverage that I have I could get to the deductible pretty fast. I could just roll the dice and hope that I didn’t have to have surgery too often. After all it hasn’t happened yet. Another argument was that I wouldn’t want to go on prednisone four or five times a year. Well I’ve needed prednisone only a handful of times in 45 years, maybe twice in the same year one time. Another temptation to just roll the dice.

Currently there is a class of drugs coming on the market called biosimilars which work like Humira and the other biologicals, but presumably would be less costly. But the bigger question is whether they work and what are the side effects.

Update on my condition

I reported in with an update for the doc, mentioning that I had pain and bloating, so now she want me to come in for a CT scan next week. Bah.

 

The straight poop

Crohn's, Health, Life

Some time ago I wrote about what I would and would not write about here. I stated that I my intention was to avoid politics and not talk about my health, specifically Crohn’s disease. I really don’t think anyone wants to read about me obsessing about my bowel movements. There’s that apocryphal story of Eskimos having a hundred words for snow. Well I could have the same diversity of vocabulary for my stools. No one wants to read about that.

But events have taken a turn lately and I’ve decided to change direction with them. My reason is that I’ve reached a crossroads where I need to make some decisions about how I treat this annoying companion I’ve had since I was 23. But first a little background.

As I said, I was first diagnosed when I was 23. I had just gotten back to Minneapolis from Northern Idaho, where I’d spent the summer working for the U.S. Forest Service. That fall I suddenly started having nasty diarrhea, that lasted longer than what could be explained by a bad taco. After about six months of tests and doctor bouncing, I finally got a diagnosis. I’ll talk more about that later. Crohn’s is an inflammatory disease of the intestinal tract. It’s an autoimmune condition; in other words you immune system attacks your own body. They don’t know what causes it and there’s no cure. It can manifest itself in various ugly ways, the most common is a really nasty case of the shits, accompanied by painful cramps in the gut. It can also cause inflammation in other parts of your body, including joints and other internal organs, as well as skin rashes. It can even do a symptomatic flip-flop and cause constipation when your inflamed poop chute contracts to the point of obstruction.

I’ve been lucky, I have a pretty mild case. I’ve gone all these years without being needing surgery, being hospitalized or worse. It can kill you. It comes and goes, a few months of remission, a few months of hell. It seems to really like to flare up in the fall. Stress seems to be a factor. Although there are some foods I’ve learned to avoid, diet doesn’t seem to be that much of a factor, but I intend to look into that aspect more thoroughly in the near future.

Three years ago I went into a remission that lasted until a couple of months ago, when it came back with a vengeance. I took my usual “ignore it and it might go away” approach until a couple of weeks ago when I decided I needed to come in from the cold and see my gut doctor. We did the usual drill of making sure it wasn’t some kind of bug and I started a course of prednisone to knock down the inflammation. I’m just starting week three of treatment.

Here’s the kicker. The doc wants me to start taking a more aggressive kind of medication. A new form of treatment referred to as a biologic, specifically in my case Humira. It works by dumbing down the immune system, which somehow just doesn’t sound like such a great idea to me. It has some nasty side effects, not the least of which is poverty. That’s right, poverty; because of something called the donut hole in my Medicare Part D coverage, I figure it’s going to cost me $8000 a year to use the drug. I can put up with a lot of shit for that kind of money.

This is getting a little long so I’m going to continue later. In my next post, I’m going to explore the conundrum presented by the next stage of treatment and my changing views of western medicine, the cost of health care and how I think about my health.