Monday, April 20, 2015


I should have known better.

Re-reading the previous three entries, I sound like an idiot.  Three days.  That's how long the treatment lasted.  A treatment I can only have every eight weeks, and it lasted three days.  I'm back to the pain and to spending, quite literally, half of my day in the bathroom.  When I am able to make it that far.  I had promised myself I wouldn't feel too much hope so that I wouldn't be to miserable when, not if, those hopes were dashed.

I really should have known better.

Still, it was a bit of an education in self-inspection.  I do need to learn to define myself in a better way, and not in terms of this vile, vile illness that over the past fifty years I have come to hate more than I could ever find the words to describe.  I really am not my illness.  I'm just not sure what I actually am.  I'm working on it.

Still, I should have known better.

Friday, April 17, 2015

So What?? (Part Three)

So if you're still with me, you've just absorbed the capsule history of my past half-century with Crohn's Disease, minus many of the nastier bits, like daily life on a bad day, or the really bad results of surgeries gone wrong.  Those things are even more off-topic than the brief history I've given.

The point of all of that detail has been to show you that, in large part, I have been defining myself in terms of my illness.  I have studied it as well as lived with it, and my life has in no small way revolved around the various and varied effectiveness or ineffectiveness of the many treatments, including this latest one, the infusion of Entyvio.

Here's the thing:  granted, I've only had the one treatment, but it seems to already be working.  Like flipping a switch.  I didn't even have much of a headache, the one noted side effect (apart from a fatal brain virus, progressive multifocal leukoencephalopathy, a viral infection with no known treatment, prevention or cure.  Not kidding.)

I woke up feeling, well, normal.  Without going into way too much detail, this morning has been the first normal morning I've had in a long, long time.

Funnily enough, I do still remember what it felt like to feel normal.  I still feel normal in my dreams, but truly, I have only felt it once in actual, real, waking life exactly once in the past fifty years.

I was going to my wife's family home for the first time, to meet her mom and sisters.  I had gone to my then-doctor and begged him for something, anything to get me through the week without having an attack from the Crohn's.  He put me on Prednisone for the trip, for the very first time, and it worked fantastically well.  I woke up on the trip with no pain, no problems, no bathroom issues.  We took my wife's sister and her family to Universal Studios in California and played all day.  Saw the original Bates Motel.  Saw the Black Lagoon.  Saw the Cecil B. DeMille Parting of the Red Sea.  Saw my wife in a spacesuit from "2001: A Space Odyssey."  It was brilliant.  And it was the last time I felt like a normal person.  Until today.

My dilemma, then, is this:  If this feeling lasts (and, oh, how I hope it does!) how do I begin to define myself now?

Please don't misunderstand.  I'm in no particular rush to get my hopes up, not after having them repeatedly dashed time and time again for the past five decades.  But if this works out, well, I am no longer my disease.  I will have to reinvent myself from scratch.  I'm not sure I know how to do that after all this time.

I'm really not.  

Now What?!? (Part Two)

Side effects.  A phrase that I make fun of during the endless onslaught of drug ads that seem to always accompany television news.  ("Warning:  May cause diarrhea, stomach upset, stuffy nose, sore throat, headache, tumors, muscle pain, or death.  Contact your doctor for erections lasting more than four hours."  Why would anyone take something that can do that???)  The side effects from those monoclonal antibody treatments I mentioned last time were not well understood at the time I began receiving them.  But my disease was progressing -- by this time I had had five or six surgeries to try to cut out the disease and it kept coming back worse, and in new places -- and I was desperate to try anything.  And a lot of people were getting really good results, including a reasonable percentage of folks who were experiencing actual remission of their disease.  So I jumped in with both feet.

It turns out that a similar percentage were getting, not remission, but instead:  neurological side effects.  After about six doses I started experiencing burning in my arms and legs.  I was given benadryl prior to treatment and continued getting the drug.  This turns out to have been a bad idea.

In fairness, I should say that there is an outside chance that the damage to my nervous system may have been caused by another aspect of my autoimmune disease.  But studies began to come out of Germany that indicated that a small percentage of people receiving this medication were experiencing similar neurological side effects.  I began to feel cold, or wet, or like bugs were crawling on me.  None of this had any basis in reality, but it was very difficult to ignore.  A series of neurologists led me to the ALS clinic at Penn State Hershey Medical Center where, after several tests and a nerve biopsy, I was told that something very strange was going on in my nervous system:  I had what appeared to be ALS (aka Lou Gehrig's Disease) but in my sensory nerves, not in my motor nerves.  I would be able to walk, and move, but could no longer trust what I thought I was feeling.  I need to be really careful around hot water, for example, because I can no longer accurately sense what is and is not too hot to touch.

And so, it was back to Prednisone, for a time.

In more recent times, treatments have been getting unusual, to say the least.  There is one treatment that is based on the idea that, since Crohn's is an over-reaction by the immune system, it can be treated by giving the immune system something else to react against.  That "something" is the deliberate infection of a form of hookworm.  Another theory is that it's caused by an "unbalanced biome" -- the billions of bacteria that make up our insides.  The idea is to kill off as much of them as possible with antibiotics and then give the patient a "transplant" of feces from a healthy relative.

Both of these seem vaguely disquieting.

Then along comes this new stuff, Entyvio.  The science behind it is complicated, but basically, it says that the idea behind the previous monoclonal antibody treatment is sound; just the execution has been faulty for some patients.  Oversimplifying, it was right to try to block a chemical pathway, but the wrong pathway was being blocked.  Entyvio blocks a different pathway that seems to be directly connected to the digestive tract.  It's been in use for about a year, and so far no side effects beyond a mild headache at the time of treatment have been reported.

(Next time:  So what??)

Cured?!? (Now What?)

I am 62 years old.  I was diagnosed with Crohn's Disease when I was around 12, so I've been living with the illness for about 50 years.  Yesterday I received the first in a series of new treatments with something called Entyviol.

You have to understand something.  When I was small, I started having severe stomach pains 30 minutes after I ate a meal.  Almost to the second.  My parents took me to various doctors until I finally wound up at a gastroenterologist in The Big City who had me take a test called the Upper GI Series.  It's the one where you drink a nasty concoction that contains barium, and a radiologist takes a series of x-ray pictures of your belly as they follow the stuff through your digestive system.  The test showed that I had severe narrowing in my small bowel, almost certainly from inflammation.  It was in a place that, when I ate, it took the food almost exactly 30 minutes to get there.  That's what was causing the pain, the fact that the food was unable to pass easily through this narrow, narrow passage.

In the ensuing years I have tried many, many treatments.  Some were better than others, but frankly, none of them ever really helped me to any great degree.  With every new treatment or medicine, I was told that the new one was probably just a stop-gap measure, but that "great strides" in treatment were being made "every day" and that there were lots of good things "in the pipeline" and that a cure was "just around the corner."

I've been waiting to turn that corner for half a century.  It has always seemed just as far away as it did when I was 12.

The treatments and medications over the years have certainly had their ups and downs.  The first one was huge doses of a sulfa derivative which was supposed to coat my insides and damp down the inflammation.  It worked poorly at best, but it did turn my fingernails and teeth and (I'm told) my bones a strange orange color.  Then research seemed to indicate that Crohn's might be caused by a hitherto-undiscovered bacteria or virus.  Treatment involved massive doses of a "cocktail" of every known broad spectrun antibiotic and antiviral drug.  There was one particular concoction that was thought to be effective.  I don't know that it did anything for my Crohn's Disease, but I know that it almost did for me.  My hair fell out and I began to go blind.  Luckily I had a superb eye doctor who realized it was the drugs that were destroying my retinas, and he had me stop the drugs immediately.  Most of the damage was, blessedly, reversed.

Steroid anti-inflammatories came next, most notably Prednisone.  It worked pretty well in the short term, making me feel almost normal for about a week.  Longer than that and my appetite ramped up to previously unimaginable levels and my weight simply ballooned up to huge heights.  This was very disheartening.  I had been the proverbial "fat kid" growing up and suffered nothing but misery from it.  When I dropped all that weight and shot up in height back in high school I promised myself that I would never be fat again if I could help it.  That was the catch.  On Prednisone I couldn't help it.  Nobody can. Plus, I became so uncontrollably irritable that it almost cose me my marriage and my family.  So Prednisone became kind of like an emergency fire extinguisher, a thing used to put out flareups and then be discarded as soon as possible.  Getting off of it involved a ridiculously slow tapering down which would take weeks, and just when I was ready to get off it altogether, I would have another flareup.

Then Crohn's research seemed to indicate that the disease was not caused by a bug, or by a sensitivity to certain foods, but was in fact an autoimmune disease, like Lupus or rheumatoid arthritis.   The body was in essence rejecting the digestive system in much the way that a kidney or heart transplant can go wrong.  So I spent the next several years taking immunosuppressants in large doses, as though I had had a kidney transplant.  Periodically we tried treatment with monoclonal antibody infusions which were supposed to block the chemical pathways that led to the self-rejection.  These had to be stopped.  Why?  Two words:  side effects.

[Next time:  now what?]

Thursday, April 9, 2015

Not My Easter

This past Sunday was Easter Sunday.  It can be a tough one for atheists and agnostics.  We can feel particularly vulnerable to the insistent beliefs of others, and they can feel particularly prickly with regard to ours.  Normally when our church seems to cater a bit more the theists and deists and Christians in our congregation I can just tune it out.  Ordinarily I would not be in any church on Easter morning, ever, except for the fact that the choir (of which I absolutely LOVE being a part!) contributes some pretty spectacular music, as a rule.  This past Sunday was no exception, with a lovely piece by John Rutter being the centerpiece, but in this writer's opinion, the rest of the service crossed a line into the unacceptable.

My troubles started during a message to the children.  After a lovely presentation by a member of the congregation as to why he has started wearing a cross -- all in "I" language, no judgements, no "should's" -- the minister took over with a story about a little boy who came into church and after sitting quietly asked, "Is God coming?"  It is, in my opinion, a very schmaltzy, sappy, chicken-soup-for-the-soul story, and I don't believe for a second that it has an element of truth to it.  You can read it here if you want to, but have some insulin ready:

If you were unable to get through the schlock, the briefest summary is that while in the sanctuary of a church a little boy named "Ryan" asked the minister, "Is God coming?"  As the story develops, it turns out that the little boy's father has passed away and the minister says, and I quote:

"Well, my guess would be that God and your Daddy are together there [in Heaven] and that God sent me and your teachers and these friends to be here with you today.  So that we could love you for God.  I think that God loves you more than you can even imagine.  And I love you too, Ryan.  I can't believe how lucky I am to know you.  I think God sent you here for me." 

One of the children in the circle was a nine-year-old girl whose mother had committed suicide just last week.

Now, if you know anything about Unitarian-Universalism, you know that you are unlikely to hear that kind of specific "God language" in our churches, even on Easter.  And a story like Ryan's would be delivered to other adults for its metaphorical message, and NOT to children.  All children take away from this tale is that there is a God, He is in Heaven, and our beloved dead are there with him.  When another minister posted this same tale on Facebook, I commented that I was upset it had been used with our children, and that I would never want my UU child to hear from her minister that her dead Daddy was sitting with God in His Heaven.  This other minister just could not hear me, or understand why I was upset.  The usual dialogue started in the Comments section of the Facebook post, with various others chiming in, and one point I was told that my atheism is "just another form of fundamentalism" and nobody wants to deal with fundamentalism.

I have to say that I somewhat resent being called a fundamentalist.  I do not proselytize, nor do I ever force my beliefs on anyone, from a pulpit or a lay group or in social situations.  When I delivered a reflection on what it is like to be an atheist at Easter ( it was because I had been invited to do so by the minister.  I am told that it was respectful and thoughtful and contributed a great deal to the Easter service.  As to my personal atheism, I simply live my life without an Invisible Friend (or as Douglas Adams said, I simply believe in one less God than other people do) and I try to do good because good is the ethical thing for me to do.  I try at all times to live the Golden Rule.  And I freely concede the point that some atheists can be real jerks about it.  I hope never to become one of them.

I do agree with "Faitheist" blogger Chris Stedman that the charge of atheist fundamentalism is very often used as a weapon to marginalize critique of religion and the religious.  It is used to maintain a status quo in which religious viewpoints, practices and communities are privileged over nonreligious ones.  Which they are.  And I do remember a time when a UU church could have a happy conglomeration of Christians and humanists and Jews and Buddhists and agnostics and Pagans and Wiccans and Hindus and Muslims and Ba'Hai and any other faith you can think to list, and we all agreed to disagree according to our Principles.  Unitarians live by their Seven Principles.  Number Three states that we should have "acceptance of one another and encouragement to spiritual growth in our congregations."  The idea is that there are many paths to truth, and we need to accept that another person's path may be very different from our own, but their path is still worthy of respect.  I remember a time when I could feel that going to church was going home, and I could learn from others and occasionally have the opportunity to impart some idea in which others found value.  But I have not felt this way about my own church for quite some time.  As to my atheism, I don't want to convert anybody, or convince anybody, or argue with anybody.  I just want to be accepted with respect for my beliefs.  I would like to feel accepted and respected for who I am and for what I do, and I find that this is no longer the case.  And I am uncomfortable with what I see as the current policy of attempting to better fit in with our downtown neighborhood location by seeming to be more Christian.  I find it disingenuous, not to say dishonest, and I believe we are not letting our message and our principles succeed or fail there on their own merits.

And while all this is buzzing around in my head, the minister wraps up her Easter sermon by asking the congregation to recite the Lord's Prayer along with her.  If you are not a UU, you have no idea how unutterably shocked I was.  As a Unitarian and an atheist, I have so many problems with just the first six words of that prayer (i.e, not my Father, there is no Father, there is no Heaven, and let's skip the rest while we're at it) that I had to look around and make sure I was in the right building.  If the friend sitting next to me had not also remained silent, I would have walked out right then and there.

This minister was hired by the temporary minister who is filling in for us while we find a permanent one.  I am hoping to be able to hang on until this new permanent person arrives.  I am hoping they will prove to be more Unitarian than what we currently have in our pulpit.  And, well, if they're not, it's not that far to drive to Philadelphia for the new chapter of atheist, humanist, do-good-because-it's-the-right-thing-to-do Sunday Assembly there.

You can read more about Sunday Assembly here, and if you're near one, you should go and check it out: