Living with Crohn’s Disease: The Tween Years (post 3)

  After coming home from Boston Children’s, I had many adjustments to make during a time when children are getting older and trying to increase their independence.  I was no different.  These years included age 11-14,  four years of  trying to maintain a strict diet, taking medications (of which I was not able to swallow at the time) , continued pain as well as psychological pain induced not only by my change in lifestyle but also by other kids who were not so understanding.

   As I mentioned in my last post I was on an incredibly bland and strict diet.  This included absolutely no roughage (ie.  peanuts, cabbage, beans, raw vegetables, raw fruits (except for banannas ha ha).  This was not ony done to help reduce the inflammation of the Crohn’s but also Crohn’s disease has a tendency to develop strictures, fistulas, and abscesses.  For example, strictures occur in Crohn’s when the inflammation increases causing a severe autoimmune response (where your immune system which is supposed to fight infection and disease instead turns itself in on the site of disease and inflammation causing a double whammy of inflammation.  When Crohn’s disease becomes out of control as it soon did with me, the Crohn’s inflammation goes through all the layers of intestine including the outer muscular layer which could then cause serious consequences.  I will go in to detail with what happened with me.

     I was supposed to be taking my medication faithfully, which with the Azulfidine, I did.  The azulfidine did not do much of anything and within 6mos of being out of the hospital  I was forced to take dreaded steroids.  I started on high doses of prednisone.  This drug is very dangerous to your body causing serious side effects but the doctors are forced to weigh the risks versus the consequences of taking it.  Sometimes, the risks do outweigh the consequences as it did in my place.  Some of the side effects of prednisone especially at the tween and teen ages, can cause you to get down on yourself.  Mainly because of the constant teasing from the “mooning” of the face.  It causes water retention, fat displacement to the face and abdomen (which makes it tough to lose weight in those areas to this day), as I said “mooning” of the face (my nickname became “chippy” as in chipmunk–I laughed it all off but truthfully it did bother me).  This is the time you begin you’re interest in the opposite sex and here I was being teased not only for my facial appearance (it also caused facial hair)and “big”belly (although I weighed just about “nothing”) but for my stunted growth.  I was not only called “shorty and shortstuff” which didn’t bother me too much (for boys it must have been horrible) but I was called “flatty” by both the boys and some of the “mean” girls.  Just being  different from others made me feel “bad” about myself.  I never questioned why however, that was up to Jesus.  I knew that what ever happened to me happened for the best in God’s eyes.  Some of the more serious side effects of prednisone are thinning of the skin and bones which could easily lead to fractures.  Once it does it’s damage here, it is there to stay.  Prednisone can also cause high blood pressure.  It also used to give me “rushes”, meaning it would make me “hyper” which caused me to talk fast, move fast and do just about everthing fast.  It’s just like your “fight or flight” response.  You’re in a constant state of adrenaline rush.  This could also make me quite irritable.  Yet, I stayed on prednisone for years until my next catastrophe.  If you’re not monitored closely and appropriately when you’re taking prednisone it can cause more serious problems with the Crohn’s Disease such as worsening of inflammation causing fistulas, and abscesses.  This occurs because steroids hide the pain and other symptoms (such as blood signs) so allowing the Crohn’s to become out of control.

     I talked about the effects of what Crohn’s Disease and the prednisone had on my physical life and pschyological and sociological aspects.  Things would soon escalate out of control as I entered high school, went through my freshman year and worried about my studies.  I was a worry wort back then for no reason (in relation to my schoolwork, I was a solid A-B student but yet I still worried constantly about tests).  At the same time, my father had gotten much worse as well.  It was found that he didn’t have colitis but Crohn’s instead.  He was always hospitillized at the Veteran’s Hospital for his Crohn’s which in my opinion was not the best place to go.  I think he was treated as a guinea pig by the surgical residents.  Not only did he have the ileostomy but had many surgeries cutting out the majority of his small intestine, leaving him with severe short bowel disease (which I will speak about later, as I have it too).  I would here my dad crying in pain to my mom in his room late at night which was right below my room (I was upstairs).  No other sibling heard this but I did and I would get up most nights to see what I could do to help.  That was very scary for me.  He would have such pain and “stoppages” (where roughage would get stuck in his strictured stoma or strictured intestine).  The surgeons kept pushing  surgery until he could have no more.  As a child you don’t understand what’s may be going on with adults and I wasn’t positive that things would be ok with him.

   One more thing  I want to mention,  just because I went through what I did does not mean that children (or tweens) will go through the same thing.  As I have said in other posts,  the way Crohn’s is treated has really changed especially with prednisone.  Prednisone is many times a last resort drug until a person can get their disease under control.  These days there are numerous medications that can help those afflicted.  Even the way surgery is done has changed.  Surgeons, as I have said before, do not just cut the entire inflamed disease out but only the area that is in dire straits such as an obstruction (stricture completely closed), an abscess or other problems found.  The rest of the intestines even if it is inflamed is left to be treated medically so that people won’t end up like myself or my father with short bowel syndrome.  Another thing, there are drugs now that treat thinning of the bones and can help to build up bone mass again.  I have to say, something I found out when I was older, I think I was in my twenties, one of my doctors changed my prednisone once I was under control to all at once in the morning (the idea being to take it the same time your own adrenals are excreting the steroid like chemicals–this way your adrenals keep functioning and are not completely shut off by the taking of prednisone sometimes up to three times/day which messes with your cyclical hormonal clock).    I had read that by doing this (since your adrenals may excrete sometime between 4-6am) the side effects of the prednisone are diminished.  This I truly believe helped me in my later years but I would not recommend to anybody to do this unless you are under the doctor’s recommendation and supervision.

   I will end this post here, and next week get into my summer of my freshman year when I lost my brother to a tragic accident.  Whos says stress doesn’t make the Crohn’s worse.  The Crohn’s disease became horrific in me.  Until next week…..Hope all stay well and have a Happy Thanksgiving!

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