Living with Crohn’s Disease: The Long Hot Summer at 15yrs old (6th post)

   As I was saying in my last post, I collapsed at the end of the school year but I was glad I made it through so I wouldn’t have to repeat a grade which would be really hard to do in high school.  My friends and classmates were so good to me.  I went to a Catholic High School so prayers would be offered up over the intercom system in school (I was told this by my cousin who also went to this school).  I missed some school, most of May and June.  I never got to make my way back to school though because of summer starting.  I had to go through the usual tests of UGI (upper gastrointestinal test–a test in which you drink a barium solution, slow sips at a time and wait for the barium to go through your entire intestine while at the same time you are having pictures taken of the barium dripping through your small intestines via X-Rays–the latter part is called a small bowel follow-thru).  I also had Barium Enemas where the barium is injected into your rectum and pictures are taken of your colon or large intestine.  These tests were not very good at diagnosing how much your Crohn’s Disease would be flaring but then it is all they had.  There are no specific blood tests to diagnose Crohn’s Disease either.  The physician would usually order a CBC (complete blood count–this would tell if your WBC—-white blood count–  were abnormally high which meant infection, and if your RBC –red blood count– was low which would mean low red blood count –either from loss of blood (common with Crohn’s Disease due to the ulcerations breaking through the intestinal mucosa and sometimes all the way through to the muscle, causing bleeding from the breaking of veins, capillaries, and sometimes arteries) or from a low hemoglobin which indicates the amount of iron in your blood (if the Hb–hemoglobin is too low your body does not have enough iron), hemoglobin is what carries the iron and allows oxygenated blood to get to all of your bodily systems.  Without enough iron you feel the results of not enough oxygen being carried throughout your system leading to extreme fatigue, shortness of breath, and cyanosis (“blue lips, fingers, toes).  Once again you could lose hemoglobin simply by bleeding or by poor absorption and intake.  One other blood test done back then and still done today is a Sedimentation rate which indicates if and approx how much inflammation there is in your body.  An  ESR (erythrocyte–red blood cell–sedimentation rate) is a generalized test meaning that it is not specific to Crohn’s Disease but is specific for any kind of inflammation in the body.   Colonoscopies, CT scans and MRI’s were not done back then at least in the hospital and by the doctor I went to.  I will get into these as they come.

     I think I should tell you how I ended up in the hospital in the first place.  I started showing signs of an obstruction indicated by nausea and vomiting and severe colicky abdominal pain.  The treatment was bowel rest.  At the time the only option was nothing by mouth, Intravenous fluids with glucose (sugar-water) rest and the continuation of prednisone.  If you’re not careful (the physician), prednisone can mask signs of worsening inflammation and infection allowing things like fistulas and abscesses to form without knowing it at times.  This is why you must be carefully monitored when you’re on prednisone and follow the doctors directions to a tee.  I also once again needed blood transfusions due to my loss of blood from the Crohn’s ulcers.  At this time the Crohn’s disease was mainly in my small intestine in what is called my terminal ileum (last part of small intestine).  I stayed in the hospital for two weeks this time getting to know the nurses in pediatrics, who were very kind.  The hospital itself was the pits in ambiance!  There was no air conditioning in the heat of the summer, the walls were grey and drab but what made it tolerable were the people from the nurses to the kitchen staff.  I made friends there that lasted many years.  I’m not sure if I mentioned it in my other posts but this is the reason I decided to become a nurse.  I wanted to help others just like these nurses were doing.  After my two week stay I was discharged back home.  I tried to taper off the prednisone as directed but just couldn’t do it.  Each time I tried to taper I would start the nausea and vomiting again and would be unable to move my bowels–the signs of an obstruction.  I think I was home for about a week on liquids (such as Ensure) when the ball dropped.  I had to go to the ER because of the obstruction and was then admitted again!

   This next admission was a lengthy one.  My gastroenterologist had a talk with a surgeon who became my surgeon and they decided to try a procedure they had only read about in professional magazines.  That was TPN–total parenteral nutrition–or back then they liked to call it hyperal or hyperalimentation.  This was exactly what it said, it would supply me with all my nutrition needed  and it was changed daily.  I’ve got to tell you this story though.  This is the first time this was ever done at this hospital and by this surgeon.  Back then, I was taken to the surgery suite, and prepped for injection of a “central line” (the central line was inserted into my central neck vein, not my subclavian vein as they do now).  After the surgeon was all prepped and ready to insert the line, he actually cut a line across where the vein lies (not punctured as done now),  approx 2 in. in length.  With only a local anesthetic I closed my eyes tight, next thing I know I hear “Shit, Je— Ch—-” he missed.  Those words didn’t make me feel very good.  So he sutured the line up and tried on the other side of my neck where there is a similar central vein, this time he guided the needle and catheter in (catheter was guided over the needle and the needle was removed) to the inferior vena cava and stopped just at the right atrium.  He sutured it in place.  To this day people ask me if I’ve had a tracheotomy.  Back then when the two wounds were fresh I was questioned non stop by my friends (once I got out of the hospital) if I had hickeys.  Surely, I didn’t have time to get the hickeys!   Just to explain why this fluid had to go into the large inferior vena cava (largest vein in your body); it was because the smaller veins could not take the high volume and concentration of the hyperal fluid without collapsing.  I had very many of these over the years as you will see but the ones in the future were simply punctured into my subclavian where it meets the inferior vena cava (subclavian was also large enough to accept these fluids). 

   So, the new treatment began.  The plan was to stay on it for 1 month so that my bowels could get rest from food.  I was kept from  anything by mouth for this period.  I got all my medications by IV–mainly the prednisone–I received the IV form.  As I waited and waited for my disease to improve, the opposite happened, I got worse.  I was supposed to be gaining weight and instead I was losing weight.  Unfortunately my Crohn’s had gotten to the extent where I had many fistulas and an abscess the size of a golf ball.  I knew I wasn’t getting any better and I wanted to get better so I begged them to do surgery.  This is how I knew about the abscess and the fistulas.  The surgeon cut out a large part of my small intestine and 6 inches of my colon (I no longer had the valve between the small intestine and the large intestine, you’ll see why this will be of importance later).  After surgery I had a penrose drain in to drain the foul infection from my abscess, I also had a G-tube in to drain the contents of my stomach (G for gastric).  I had a huge dressing on my abdomen to keep me from eviscerating (opening up due to my poor nutition).  And I ended up in the Intensive Care Unit.  I had lost so much weight and the abscess was so big that my heart started racing with surgery up in the 160′s —this is very fast–so they needed to monitor me closely.  Of course, at the time, I didn’t know why I was in the ICU!  But it scared me.  My dad was holding my hand throughout thinking he was going to lose me (I didn’t realize it at the time—and I’d say  that was a good thing!  I saw people dying in front of me since it was one big ward, it was kinda scary at the time afterall I was only 15!

   Finally, the day came where I was transferred out of the ICU.  I felt so much better.  I spent about a week in the hospital after my surgery.  I think altoghether it was a total of 5 weeks in that drab, dreary hospital (thankfully, hospitals aren’t like that anymore).  Things after that, went ok, I started slowly eating again–it took a little while for my bowels to start up again–but once they did yum yum I got to eat again.  That hospital food was crap though.  I couldn’t wait to get home and have my father’s famous fried chicken (I know not quite on the list of things to eat but I was told after surgery that all my Crohn’s Disease was gone, the doctor chopped every little bit out–not a good thing–they don’t do that anymore!  So, he told me I could eat anything I wanted.  I had a minor call back to the ER a week later because my incision got infected but other than railroad tracks on my belly that was it.  I was soon to find out that this surgery didn’t put me into remission for long.  Six months it was back again but I just did the usual prednisone, diet etc., I made it through without having severe problems until my junior year in college (5 yrs later).  I also was to learn that this was not the way things were done in teaching hospitals with pediatric gastroenterologists.  It’s too bad I realized this too late, I might have been spared some intestines seeing that I only have 3and a half ft. left out of 21ft. 

   That’s ok though.  I’ve managed, I’ve had other surgeries where they’ve only taken about 2 in. out and things have worked out medically.  I’m not too worried.  I take things one day at a time now.  I have good doctors and am confident in their skills as well as treatments.  I may be flaring right now but with the way I think now, it has helped tremendously.  I also watch closely what I eat, and I don’t eat what bothers me.  I’ll go into the present in my future posts but I just want anyone out there with Crohn’s to know that I’ve been through a lot but I always put things behind me, take things one day at a time, trust in my faith and keep an optimistic and positive outlook to keep those endorphins running (remember, endorphins, are those, morphine like substances made by your body to help heal and keep you on a positive outlook)!  Until next week, stay well (although, its Christmas, I may not be posting, I maybe doing lots of cooking and baking instead because we are having a big shin dig at our house Christmas Eve with all the family).  In case I don’t write next week,  Have a Merry Christmas!!  I hope Santa is good to you and your health!

Tags: Crohn's Disease