How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part II. The Treatment.

In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disease of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers.  Since getting my Crohn’s diagnosis, friends and family members have spoken and acted in such ignorant and hurtful ways towards me and my situation that I have unapologetically cut off contact with almost everyone I know.  I just didn’t have the physical or mental stamina to deal with their hatred or to correct their misperceptions about me, my disease or my “new” life complicated by serious and debilitating chronic illness.  When I say “hatred” I am referring to hate as a verb: the process and practice of othering me, my body, my experiences, my needs and my life.  I am sure if anyone asked them if they hated me they would say they didn’t, not in the noun-sense of feeling hateful emotions towards me.  But in the political, material sense, othering is hatred — the kind of hatred that civil rights groups have actively resisted and sought to eradicate because othering causes disenfranchised people to suffer and die when their needs, desires, interests, perspectives, histories and calls for justice are roundly ignored.

In this Part II, I will describe the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with.  In my experience, which I have seen mirrored in many online support groups for Crohn’s patients, the accepted treatments for Crohn’s are often brutal and offer minimal or no relief.  Furthermore, with its toxic Big Pharma poisons, invasive tests and risky surgeries, Crohn’s treatment often causes “side-effects” that are as bad as or worse than the disease.  For example, an immune-system obliterating series of infusions was the next weapon in my gastroenterologists’ arsenal and is known to cause opportunistic infections, cancer and even death.

As anyone who has ever treated with powerful steroids knows, some medications scramble your brain, and Crohn’s treatment includes those types of drugs and more.  This alone, in my estimation, should have afforded me some amount of care and consideration from my family but of course it didn’t — I was being constantly interrogated by them from afar and admonished to keep them abreast of my situation even though I was desperately ill, and even though my most geographically-close relatives were a thousand miles away.  When I didn’t respond in the ways they would have liked they dug their heels in deeper.  My mother started an imagined family drama wherein “our relationship” was suffering, I was “mad at” her unreasonably, and she enlisted my aunts to intervene on her behalf.  In reality, I was just too sick to give her what she wanted, which was near-constant updates and a voice — meaning decision-making power — in my treatment and in my life.  But although neither of us knew it at the time we did it, by having moved more than a couple hours’ drive away from each other years ago we had de facto relinquished our rights to constant updates and decision-making power in each other’s lives if one of us fell ill.  Being formerly healthy, not to mention young, it just did not occur to me how difficult it would be to keep people “in the loop” from afar if something went wrong in my life or that they would demand it.  Being that she was and is a nurse, I don’t know what could possibly be my mom’s excuse for not knowing either but she apparently didn’t.

My first treatment for my debilitating and painful Crohn’s disease was a course of powerful antibiotics along with a topical anti-inflammatory called Pentasa: it consists of an NSAID anti-inflammatory medication inside a special capsule that stays intact through the stomach then disintegrates, depositing its payload directly onto inflamed intestinal tissue.  I was so desperate to begin my treatment and to get any amount of relief that I swallowed my first day’s dose of 8 enormous horse pills in the pharmacy parking lot.  I was prepared to go to the hospital if the medication didn’t provide quick and significant relief — I had been in agony for many months and I simply couldn’t take it anymore.  Weirdly, my doctor was playing some kind of game with me where he suggested — strongly — that I utilize my intelligence and research skills as an attorney and “research what treatments are out there.”  Looking back I believe he was trying to warn me that nothing he had in his arsenal was going to help and if that’s what he was getting at he was right.  To be honest, the next several months are a blur.

I did get some relief from the Pentasa — as I recall, it was like a healing balm.  But at some point it must’ve stopped working because I also took several rounds of the steroid Prednisone as well which were hideous.  I was in constant agony and sleepless from the pain and then on top of that, due to the steroids my insomnia intensified; I was worried about opportunistic infections (I couldn’t use tampons because of the risk of Toxic Shock syndrome and thrush); my mood was not just dark but black; and my brainfog was as thick as condensed soup.  I remember we got a bad snow storm and there was some 3 feet of snow on our porch.  The cat wanted to go out so I opened the window as I normally did and he jumped onto the porch and disappeared.  A few seconds later he was back on the windowsill looking stunned, disheveled and exhausted, as if he had nearly drowned.  I never would have let him out in that normally because he actually could’ve drowned in 3 feet of fresh snow but I just hadn’t thought about it.  That kind of oversight, and placing a beloved pet in harms’ way was completely unlike me.  I am sure it was the Prednisone.  Frankly, since I was the one member of the household normally tasked with good judgement and foresight, all of us were lucky no one died.

After about a year of trying to get to a tolerable level of pain and then stabilizing there, I actually felt well enough to try to get off the medication altogether.  Pentasa is extremely toxic to the kidneys and I was having weird urinary symptoms like being up and down all night having to pee — it was as if my kidneys were not winding down at night as they should.  My doctor issued a stern warning not to stop the Pentasa ever, as I would need a maintenance dose long-term or forever to avoid an imminent flare.  I naively thought “I’ve got this” and did it anyway.  I told him one professional to another to just make a note of his recommendation in my file to cover his ass (he already had), that I understood his instructions, but that I was going to do it anyway.

My decision was a poor one.  I felt alright for a day or two but by the end of the week I was back in his office in extreme distress.  I was given more steroids, this time I used Entocort and again, it was like a healing balm that didn’t last.  I tried half a dozen restrictive and contradictory allegedly Crohn’s-friendly diets without success.  Since I felt better when I didn’t eat at all, several times I simply stopped eating.  Obviously that was not a long term solution and as a last-ditch dietary effort I tried the so-called elemental diet, an enteral feed known as Vivonex, a sickly looking yellow fluid that is meant to be taken through a feeding tube and is unpalatable by design but you can drink it if you want to and if you can keep it down.  It tasted the way a restaurant walk-in cooler smells, which is damp, food-like and disgusting, and it didn’t work.  I started to become emotionally distressed at the prospect of never being able to eat normally again, or at all.  Then came more antibiotics, more Prednisone (probably, I don’t remember) certainly more Pentasa and in a years’ time I was starting to feel somewhat better, but I never again felt as well as I had when I thought I could stop medicating.  It took a whole year to get back to half the level of health I felt then, and even that wasn’t great.  Then very shortly thereafter I started feeling worse, and pretty soon I was circling the drain.  It was at that point that we decided I would try the next Big Gun in the Crohn’s arsenal — an immune-system decimating series of infusions that was supposed to stop my body from attacking itself, otherwise known as catastrophic immunosuppression.

This concludes Part II of this series, in which I hope to shed light on the serious and debilitating side effects of Crohn’s disease treatment and why Crohn’s is not “just” a tummy ache, although tummy aches are bad enough aren’t they?  Everything we need to live is in our “tummies” which this fast- and junk-food obsessed, yet poop- and fart-phobic culture downplays constantly as it is.  If your tummy isn’t happy, you will not be happy, and when it goes on for a long time this is the very definition of serious, chronic illness. 

In Part III, I will describe my escape from Western medicine and my attempts to heal myself with medical cannabis, or marijuana.  Friends and family members: take heed if you wish to be a positive force in a Crohn’s patient’s life instead of a nagging, dismissive asshole wholly ignorant of what Crohn’s treatment entails and how debilitating it is, and how the human body works and what it needs to survive, much less thrive.  If it sounds like I’m a bit angry, it’s only because I am.