Category Archives: Health

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.

Meanwhile back at the ranch.

Family, Getting Old, Health, Life

IMG_1466To say there’s been a lot going on in my life since my last post is like saying the Titanic sustained some minor damage from an iceberg hit. I got a new job. I broke my hip, my daughter got married, I learned to surf. Ok that last one is a lie.

In August I was contacted by on of my web clients, The Minnesota Spokesman-Recorder,  asking for me to recommend a print designer. The Spokesman-Recorder is a weekly newspaper for the African-American community, it’s the oldest Black owned business in Minnesota. Their designer had left for another job and they were looking for someone who could take over and help them with laying out the paper and handle collateral design projects.

I’ve been tossing around the possibility of getting a part-time job, a few hours a week to supplement my retirement income. But given the fact that I can’t really bend my knees or be on my feet for long periods of time, I’m kind of limited to what I can do. I already failed as a barista. But doing some design work in-house a few days a week would be perfect. So I recommended myself. I’ve been working there for a couple of months now and I really enjoy it, great people to work with, perfect hours and a regular paycheck. Between Social Security, my freelance income and this, I’m almost as much as I did when I retired.

Actually I didn’t break my hip. I broke my greater trochanter. Which is the little nub on the outside of the top of the femur where the glutes connect to your leg to articulate your hip. If you’re walking through a house that has a sunken dining room, looking back over your shoulder talking, it’s the part that hits the floor first when you miss the step. Yup, that’s what I did. In Chicago at the rental house we were staying at, two days before the wedding. I had the pleasure of escorting my daughter down the aisle on crutches.

The fracture wasn’t displaced and didn’t require surgery. They didn’t see the crack on the X-rays in Chicago, they diagnosed it as a bone bruise. It wasn’t until the pain wasn’t getting any better and I went to a local bone doc who discovered the break. I didn’t have much pain in resting position, but there were certain movements that gave me a breathtaking shot of pain. I was told to use crutches until the pain went away and start physical therapy. It’s been about five weeks now and the pain has pretty much gone away, it seems to be getting better by the day. I’m down to one crutch now, and sometimes I find myself walking around without it. I’m hoping to be crutchless next week for the Gopher Women’s Basketball opener.

Yes, Lucia and David got married. I’m going to save this story for another post.

Pills

Health, Life, Rants

skeleton

I have Crohn’s disease. I take pills. Twelve a day. Really expensive pills. Thank God for insurance. Specifically, I take Asacol, which is Mesalamine wrapped up in a plastic tablet that’s designed to keep it from releasing the good stuff before it gets to the target area in my poop pipe. It works, kind of. I have long periods of remission punctuated by some very long periods of, let’s just say, discomfort. When that happens I get to take a course of Prednisone , which is similar to making a pact with the devil. Fortunately I’ve been in a fairly long period of remission (knock wood) I think partially due to some diet changes and some supplements that my doctor probably would view as the product of witchcraft, but that’s another story.

Continue reading Pills →

Overheard at the Nursing Home

Getting Old, Health, Life

Yesterday I visited my friend and neighbor who is recuperating from surgery at a nearby rehab center. It’s the same place that I spent a week in after I broke my hip. If you have to be in a place like that, it’s a pretty good place to be. The people were really great and my therapist Kari set me on the road to an amazing recovery. I not only had a broken hip, but at the time I was minus a knee. They had to remove my first artificial one for about six weeks because of an infection. I fell while on crutches and broke my hip. At that point I wasn’t sure if I would ever walk straight again.

Visiting my neighbor was sobering, he’s in pretty bad shape. That’s another blog. I was feeling pretty down as I left him, but between his room and the front door of the center, I had an encounter that left me laughing to myself the rest of the day.

In order to get from the rehab area of the building to the exit, you have to pass through the common area of the nursing home section. As I entered two women in wheelchairs were meeting in the hallway, one was being pushed by an attendant ant the other was in a motorized chair. They looked to be well into their eighties at least. As they passed I couldn’t help overhearing their conversation. For the sake of the story I’ll call them Mabel and Alice.

Mabel, in a teasing tone, “What’s this I hear about you….”  I didn’t catch the end of the sentence.

Alice replies, loudly, “Oh that’s bullshit!”

I proceed to the elevator and press the down button, not realizing that it had a security code so the inmates couldn’t escape. Fortunately one of the nurses came along and let me out, I was beginning to think they were going to keep me. But the delay was a good thing because it resulted in my standing there long enough to hear another exchange with Alice. She had been motoring along right behind me and stopped at the nurse’s desk, where an elderly gent we’ll call George was standing, conversing with the pretty young aid who was holding down the fort. Speaking to George she cracked, “Are you paying her by the hour to sit there and listen to you talk?

“What?”

“Are you paying this poor girl by the hour to listen to your dumb stories?”

“Who put a nickel in you?”

“You did.”

George must have been at a loss for a good comeback, because as I entered the elevator, he was grumbling away in German.

Dementia Check

Health, Life, Sport and Fitness

Yesterday I went to the club this morning and put in 45 minutes on the treadmill, at a pretty good pace for me. Between 3 and 4 miles per hour most of the way. That’s a huge improvement over where I was two years ago, or even three months ago. But the workout left me questioning my sanity a bit. I was working out to Rock’n’Roll on the iPod and when Los Lobos live version of Marie Marie came on I pumped the speed up to 4 mph, which is a pretty good walking clip. When it was over a slow Bonnie Raitt song came on and I slowed down to it’s tempo. I was getting into Bonnie’s slide work and kind of closed my eyes. When I opened the up again, the treadmill’s control panel was running away from me. I had obviously slowed down too much and didn’t realize it. I was about to go off the back end, not able to reach the shutoff and too little time to catch up, and a concrete wall right behind me. I surprised myself by thinking fast enough to kick my legs out from under me, get my feet on the floor behind me and stop my fall with hands on either side of the moving pathway, on the edges of the treadmill. Thank God I’ve been working out, I never thought I’d attain that level of agility again after the year of the knee.

So I get plus marks for the physical realm for the 45 minutes of walking that endless highway and having the agility to to fall down without injury. I’ll even give myself a point in the mental column for realizing, in that split second before I went flying into the concrete block wall behind me, what I had to do in order to make a safe landing. But I’m a little concerned with the mental process that put me in that situation in the first place.

The Worm Turns (My Stomach)

Health, Weirdness

I first heard about this experimental treatment for Crohn’s disease several years ago when the University of Iowa was doing research on it. The treatment consists of exposing the patient to infestations with worms, specifically N. americanus and A. duodenale. Hookworms to me. This radio broadcast from WNYC Radio Lab contains a fascinating interview with Jasper Lawrence, the founder of Helminthic Therapies. The pertinent stuff comes in at about 30 minutes.

Jasper, a transplant from England, living in Santa Clara, suffered from severe allergies and asthma. He was hospitalized twice a year, suffered from a nagging cough, he had the dark, sunken eyed, pale complected look of a severely allergic person. While visiting his Aunt on a vacation to England, she asked if he had heard about new breakthroughs in the study of allergies and the immune system that she had heard about on a documentary on the BBC. It seems that it had been discovered that people with hookworm infections were 50% less likely to have asthma, and that other diseases like Crohn’s disease and Multiple Sclerosis were virtually non-existent in the developing world, where sanitation was, to say the least, less than optimal, and hookworm, spread by contact with human feces was prevalent. The explanation for this is that somehow the presence of hookworms in a person’s system has a dampening effect on the overactive immune systems that are bent on attacking the cells of their own body.

This sounded like a pretty good deal to Jasper so he immediately went about trying to purchase hookworms so he could infect himself. No one was selling any. It wasn’t an approved treatment and there weren’t any to be had. So, taking the matter into his own hands he spent two weeks in Cameroon on the west coast of Africa, which he describes as “the armpit of Africa,” traveling about in the bush looking for latrines to walk through barefooted. After 30 or 40 such treatments he returned home with a pretty good hookworm infestation as a souvenir. When the next allergy season rolled around, he found that his symptoms were gone.

In the early twentieth century, backed by a million dollar gift from John D. Rockefeller a commission was formed to eradicate hookworm from the U.S. The five year program had great success in wiping out the parasites and reducing the anemia and other health problems they cause. And so, isolated from hookworms in my youth, never getting the chance to dance through human shit as a lad, my immune system went nuts and started attacking my digestive system.

Jasper Lawrence decided that he would form a business treating auto-immune diseases by selling patients hookworms and the means to infect themselves. I’m not sure what those means are but I’m sure they’re fun. The treatment is still not approved by the Department of Health or the DEA or for that matter any government agency, but Jasper’s pretty upfront about that fact and his site is loaded with caveats and disclaimers, but also a number of endorsements from satisfied customers. “Thanks for  the infestation, Jasper.” The price tag for a good worm infestation: $2900. And where does Autoimmune Therapies get it’s raw material. Jasper provides all the worms needed in his own poop. Talk about pulling a business out of your butt.

I have to ask myself the question. Given the severity of my Crohn’s (not particularly severe, but certainly not pleasant) and given the cost and side effects of supporting a colony of parasitic worms in my guts, would I try this treatment? When I first heard about it, I thought, “hell yes” dish me up a platter of worm eggs! I’ll do anything to get rid of this curse. But after reading these articles, and hearing what the cost is and thinking about those squiggling little buggers sucking blood from my intestinal walls, well, maybe not. I’ve had low hemoglobin before and it’s not a fun thing, and although I get a little anemic during a long flare up, I guess I can deal with that, knowing it eventually will pass and I’ll get a nice period of remission. There’s just something about the ideal of having blood sucking worms in me that sends a shiver down my spine. So the answer is, no freakin’ way.

I’d love to hear what you think about worm therapy, autoimmune disease and bloodsucking, please leave a comment.

Puce Bras and Smelly Gophers.

Health, Life, Sport and Fitness

Yesterday R posted “puce” on facebook. I started noticing other posts simply naming a color. I didn’t make the connection until a couple of hours later but coolass tipped me off to this. R came downstairs rolling her eyes and admitting, “I am such a dork.” She thought that people were just randomly posting colors, so she jumped on the bandwagon. I was wondering, because I didn’t think she owned a puce bra. I’m glad I didn’t jump on the bandwagon.

Thursday night my friend Brad and I braved the elements to watch the Gophers WBB take on Northwestern. It was a great game, the Gophs came back from 16 down with a dominating second half performance. At one point Goldy, the mascot sat down in the seat in front of me. I can tell you that Goldy kind of stinks.

Breast Cancer Screening

Health, Life

If you are looking for a concise and thoughtful take on the new mammogram guidelines, my friend Susan writes about it in her blog. I find the guidelines to be a strange risk-benefit calculation. Although I must admit that I’ve consistently declined prostate cancer screening.