Living with Crohn’s Disease: re: stress and the loss of innocence (post 4)

    As I said in my last post I  would pick up from the summer after my freshman year in high school. I was still on prednisone but it was managing to control the Crohn’s Disease.  Even though I had lost some of my childhood to this disease I still had my innocence.  One week-end, at the start of summer, my little brother, Tommy (who was 8 yrs old) and I, spent a lovely week-end together going bowling, playing kick ball and watching comedies together ( I was babysitting and I had him to myself).  He was very special and loving, always expressing to us how much we were loved .  He was able to bring my stoic mother out of her shell to become playful and outwardly loving something she had difficulty doing (she was French Catholic, very common ideal).  Family plays a huge role in how you handle Crohn’s Disease (it is a family disease in more ways than one).  I had three other brothers who would eventually all “inherit” my father’s Crohn’s Disease at different levels of severity even to this day.  Crohn’s has been found to have a genetic predisposition.  This is one of the components of Crohn’s along with some unknown other reason which leads to the disease.

   I was painting my furniture (a couple of days after Tommy and I had that great week-end together)  when I saw a police car drive into our driveway.  I was so naive.  I thought they were there to question us kids about  the fact that we hadn’t yet registered our bikes.  I flew down the stairs and saw my mother crying almost hysterically in the presence of a policeman and a priest.  I had never seen my mother like that before.  I didn’t know what was happening and it was scaring me.  I ran upstairs to enlist the help of my older brother.  We ran back downstairs and we were told the most horrific news I think I have ever heard (which affected me deeply) until this day.  My innocence died.  My little brother Tommy had been killed.  He was walking his bike up the side of a hill, stood on a corner on the side of the road to let the town garbage truck go by.  Instead of going by Tommy, the truck made a sharp turn and ran over my brother.  He had nowhere to go (there was a fence immediately behind him).  There were 3 people on this truck who were aware that my brother was in the vicinity and still the accident happened.  The two men working on the back of the truck quit after that day and the driver got right back in his seat and kept driving that day.  To this day, I believe that they installed the bells on trucks when they back up due to my brother’ death (at least in our little town).  It was determined that the driver was at fault.  Don’t believe it when doctors say that stress does not affect Crohn’s disease.  It may not cause a flare up but it can sure make one worse.  When my dad came home from work, he was crying, came and hugged every one of us, and told us how much he loved us.  It crushed him.  It affected his disease tremendously.  He identified the body which caused my dad traumatic flash backs for the rest of his life.  I immediately occupied the bathroom with non-stop diarrhea and some nausea and vomiting.  My mother closed up emotionally and my other brothers handled things differently as well.

   Coming back to me, the stress of this caused my “controlled” Crohn’s Disease to become severely out of control.  I kept every feeling about the accident and how it tore me apart to myself.  My family stopped talking about feelings.  My entire sophomore year I had difficulty concentrating but was able to keep good grades.  My prednisone levels kept rising as well as my need for the antidiarrheals, lomotil and immodium.  Both my brothers, Frank and Paul ended up having to have surgery.  Paul had a small amount of small bowel resected as he had severe fistulas.  Frank who had also been on high dose steroids and had not been well monitored by his medical doctor got into much difficulty with his Crohn’s Disease.  It was in the majority of his colon.  He had to have surgery as well but the local surgeon saw that his case was so complicated by abscesses, fistulas and an obstruction that he sent him to the Lahey Clinic.  He had some of his colon removed but it was not at this point in time that he had his ileostomy.  That came for him after graduating from high school.  He also had many of the non-abdominal manifestations of the disease such as mouth sores and leg ulcers which are associated with Crohn’s where I have had mouth sores, uveitis (eye inflammation), arthritis and now ankylosying spondylitis which is a rare condition where your spine starts to fuse and become very rigid.  This usually doesn’t happen until you’ve had the disease for years if it does even happen.  You end up with back pain.  I’m mentioning these because these are all related to extraintestinal manifestations of Crohn’s Disease caused by once again the auto-immune response. 

   In addition to my brothers being sick, my dad also had a very bad flare.  This was off and on but mostly “on” his entire life, until the VA residents surgeons cut so much ileum (he already had an ileostomy) that he was left with severe short bowel syndrome at an early age.  I wish I had been a nurse back then so I could have informed him correctly about what they were doing (remember they don’t do that anymore, they just cut small sections that are complicated and leave the rest to deal with medically.   Crohn’s disease tends to have “skip segments” (portions of diseased bowel separated by portions of good bowel), they would cut the good with the bad and that is a definite no-no.  That is never done now.

   That summer and year was difficult  on the entire family.  If I could show you a picture of us at Christmas I would.  We were all thin, gaunt with dark circles and looked depressed.  Everything was made more stressful with the death of  my brother and the ongoing grief I felt.  My Crohn’s became out of control as I struggled to keep up my academics, activities and social life while keeping my feelings bottled up inside.  Our family stopped discussing feelings.  Since there were not many known ways to treat Crohn’s, ( I tried immuran to no avail), all the doctor did was increase  prednisone.  For me, the year would soon culminate into an irreversible flare which would lead me into the hospital at the end of my sophomore year in high school.  There is no doubt in my mind that had I continued to go to Boston Children’s I would still have more of my ileum (I have short bowel syndrome as well)  but like I have said before I had no knowledge at the time (I was not yet a nurse) and hindsight is always better than foresight.  I will continue with the rest of this story next week.

   Once again, I want to reiterate that this was a long time ago.  I was only 14-15 yrs old (over 35 yrs ago) and there was not yet much for Crohn’s in terms of treatment.  (Some of it due to doctors inadequacies and some due to lack of research).  So, I’m sure there might have been a couple of things they could have pulled out of their sleeve if they’d sent me to the proper place (back to Boston Children’s).  And then again, there was still the lack of new treatments which they do have now.  Doctors now would never let me get to the point I was at back then.  So, don’t think this would happen to you.  Not only are there newer treatments but now there is meditation for your stress to help cut it (this is what I’ve used in the recent past;  and different things work for different people).

   Things are so much better despite the fact I have less intestines because I have a warm, supportive family with whom I can express my feelings.  There is much to be said about the catharsis of “venting”.

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