Diary of a Crohn's Flare: Perceptions

Diary of a Crohn’s Flare: Perceptions

Our Perceptions

For me the change from going from remission to flare is usually gradual.  My cramping, diarrhea, and pain gradually increase over time.  This makes adjusting to the new situation easier.

However, the change from flare to remission has been very sudden for me.  After recovering from my flare 16 years ago, I felt a profound sense of loss because my sense of self had become intimately wound around all aspects of my chronic illness.

• I expected to suffer great pain and an urgent need use the restroom immediately after eating.
• I expected bathroom visits to rule the timing of my life and make me embarrassed during meetings.
• I expected to need to take handfuls of medications multiple times a day (and suffer those side-effects too).
• I expected to need to take extreme care in ordering food and eating what was given to me.
• I expected to suffer criticism from strangers, friends, and family members for my "poor selection of food" which had less or no fiber.
• I expected to suffer reprimands from these same people along the lines of "no wonder you're so sick, you eat like crap."
  
  

After achieving remission, I no longer had to carry a zip lock baggy filled with medications I might need.  I didn't need to bring my own private stash of Preparation H wipes.  I was able to go out with friends and not worry about locating the bathroom in each building we went to.  I was able to eat meals when I was hungry and not make plans to ensure a bathroom was in easy reach for up to an hour after eating.  Similarly I didn't need to worry about eating causing cramping and keeping me from running.

This "new me" with so few requirements meant I spent much less time planning the details of each outing and was able to simply go with the flow.  As I adapted to my remission I overcame my self-perception of a sick person and for many years looked and acted the part of the "healthy person" persona to everyone.

Employer's Perceptions

During my latest flare, my coworkers could not understand how I was able to run 10 or more miles one day but be too sick to go to work the next. After thinking about this for a while I was able to explain that "I'm very physically fit but I am also extremely sick". This is not a combination that anyone sees very often.

As my flare progressed, I spoke with my managers and key coworkers and explained any new disease complications and planned treatments (and their potential complications).  I came away from each of those meetings with the feeling that they "just didn't get it."  Honestly, I understand why what I was saying didn't sink in.  I was telling them that my situation was getting very bad, but they could see that I was still strong, I was still running 25+ miles per week, and able to make all work meetings.  If I could do all that, then clearly my explanation of all the complications was more of a worst case scenario

What they didn't understand was how much effort it took to keep this up.  Even worse, they didn't understand that one of my conditions (the abdominal abscess) was life threatening and that it could (and eventually did) hospitalize me on short notice (e.g. ER visits) on multiple occasions.

On the plus side, my talking with management about my condition did prepare them for what eventually happened.  I needed disability leave to care for my worsening condition and I believe my frequent updates about my health allowed them to fully appreciate the implications when I left for disability.

 

Family's Perceptions

I've now suffered from Crohn's longer than I've lived without it and have known of my condition for all but 1 year of my adult (post college) life.  My wife only knew me for 8 months before my diagnosis.  All of my kids were born after my diagnosis.

You would think that my family would know my limitations by now and would think to ask me before committing me to various activities outside of the home.  You would be wrong.  The worst of my flare experiences has lasted only 2-3 years of the almost 25 years that I've lived with this disease.  During all of the rest of that time, my Crohn’s symptoms were mostly annoying and not debilitating.  I still suffered from daily diarrhea, I still had occasional cramping, and I still suffered from health problems requiring surgery (fistulas and kidney stones); however, on a daily basis I could “fake” being healthy.  And yet, my family still makes arrangements committing me to evenings away from home without consulting me to see how I’m feeling.  I should just tell them not to do it, but I feel like I need to go; so I pack up medications to alleviate the worst symptoms (diarrhea, cramping, and pain) and do the best that I can.  I can usually keep up the “healthy” persona.

In fact, whenever I go anywhere - even work - I pack up all of my "as needed" medications and bring them with me.  I never know when I might need them.

Friend's Perceptions

I've spent almost all of this latest flare on disability (away from work, coworkers, and friends) either hospitalized or house bound.  Very few people outside my immediate family have seen my "chronically and very ill" persona.  This means that when people invite us places, they aren’t aware of the demands those invitations might make upon me.  Rather than attempting to explain the situation, I often agree to go and use the same tactic that I use with my family, pack up medicine to alleviate my worst symptoms and do the best that I can do.

For this particular flare, I seem to be past the worst part.  I am mending and am much healthier than I was this summer.  I have also started actively working on improving my fitness again.  As I work on rebuilding my running base, I hope to soon present that "physically fit" persona again.  But as I mentioned before, very few people are able to separate being physically fit and being healthy.

I am still experiencing a major flare of Crohn’s Disease and still suffering from many of Crohn's Diseases negative side-effects.  I am simultaneously still suffering from potentially life-threatening fungal pneumonia (although my body seems to have fought that strongly enough earlier that I now suffer very few symptoms from it).

As soon as I get the “all clear” message from my Infectious Diseases doctor, I’ll start taking biologicals (Remicade) for my Crohn’s flare.  This medication, although not technically a chemotherapy drug, can cause nearly all the same symptoms of chemotherapy (from loss of hair to death).  On days I take the drug through IV infusion and for several days afterwards, I’m likely to feel like I’m suffering from the flu.  However, in order to minimize the impact upon work, I’m likely to arrange to take the drug on Fridays so that I can go back to work on Monday.  My employer and coworkers are unlikely to see the impact this has upon me.

Contributing to misperceptions

In March of this year, I figured out that running actually caused much of my abdominal pain. After making the connection, I ceased running completely and remained sedentary for over 7 months while the doctors fixed the underlying problem (the abscess) through major surgery. I am finally able to run again but even the shortest of these runs is taking a toll on my body.

By immediately returning to running and getting my body back into shape, I now realize that I massively contribute to the misperceptions of my health.  I do not intend to mislead everyone that I know (myself, family, friends, and employer), however, I am also unwilling to squander any time that I feel good enough to do stuff on trying to maintain the image of being sick.  I *am* sick but I refuse to act sicker than I feel.  I prefer to spend that time doing the stuff I want to do because I don't know when I'll be able to do them again.

I realize that sooner or later, my Crohn’s will flare again.  When that happens I may only be able to feed myself and move between the couch and bed.  I might not even be able to do that much.

Other thoughts

We could spend our time ensuring everyone knows how sick we are.  This would help us manage other’s expectations of us.  But to me this requires too much sacrifice – namely not getting to do the things that I love to do.

What I should do is (like I already do with my employer) explain to family and friends that when we agree to a commitment we might need to back out of that commitment with little or no warning.  Luckily for me, in most cases my spouse has been able to complete the commitments that I could not.  Still I have disappointed my children when I’ve missed a band or theater performance that I agreed to attend.  Years later one of my children still hasn’t forgotten or forgiven me for missing a theater performance.

And when my spouse makes commitments for me, I need to ensure that both she and others know that my commitments should be considered more like an “intention”.  I can’t really commit to anything.



If you read my blog, would you mind letting me know why you read it?  Do you suffer from or know someone suffering from IBD or other chronic condition?

Should I write some more technical posts?  I've got many ideas that I'd like to get written down but haven't had the chance to commit those thoughts to electrons.