It’s Been Awhile But I’m Back–Crohn’s Disease: The Combat Within…post#9

It’s been about 2 years since I wrote in my Crohn’s blog.  That’s not to say I’ve been better.  I was doing very well for almost a year, enjoyed last summer immensely.  Bad news came last May when my Doctor, Doctor Sands, left MGH to take a job in NYC to do the job that Dr. Crohn’s did (I’m sure everyone knows who Dr. Crohn’s is–if not, he’s the one who discovered Crohn’s Disease–that’s how great Dr. Sands is.  I was truly sad to see him leave.  I now have his partner who is left @MGH and its just not the same.  Unfortunately I’m back to worrrying about my health which I never did with Dr. Sands.  The worrying is because I feel he doesn’t really listen to what I say.  Here we go again.  The remicade has been helping but I’ve been getting it every 8 weeks.  For the past 3 cycles I feel the disease coming on at the 6th week.  I need to get back to a 6week cycle.  That will take awhile, I don’t think this doctor will believe it unless he sees it so first, I’ll have to have another colonoscopy.  Oh, how I hate the preps.  They can never get an IV either.  My last colonoscopy 3 years ago (I know I’ve been lucky)I was stuck 12 times to try and get an IV despite the fact I had a venous access disc in my chest.  I ended up doing the colonoscopy without sedation,  I could have come back but I just didn’t want to go through the prep again.

I now have my second port in since the last port was unable to give blood when drawn.  The only time it extracted blood from the disc was the day it was put in.  So I live with them having to stick me each time I go for my Remicade because they need to get the bloodwork necessary before they can give it to me.  Luckily, there has been one phlebotomist who has been able to get blood on the first try in the same vein.  Hopefully this will last because I don’t know what they’ll do if they can’t.  They still infuse the remicade through my port because they “feel” it’s in the right spot.  I’m at my 7th week.  Last week was absolutely horrible.  I had stomach pains, leg pains, irritablity etc.  I was just getting back into working out at Planet Fitness.  I’m thinking because I sweat so much and didn’t take in the proper fluids and electrolytes that caused the symptoms.  It was hard to get out of bed, I was sooooo tired.

My daughter is graduating June 5th.  She’s had a couple of events already that I didn’t know if I would make it.  I have such a great family, my daughter was not going to let me skip her senior piano recital–so my husband washed my hair for me and my daughter dried it while I kept having the sweats during the day (as well as night sweats).  I made it, don’t underestimate me or my family when there is something to attend. lol  Her senior prom was next but she wasn’t going to the grand march so I was able to rest (it was the same day as the recital, I was just a little exhausted).  Time is coming and going fast.  It won’t be long before awards night and graduation is here.  Where did the time go?  I am happy for her.  She’s going to be a pharmacist (she said she always wondered how my medications worked and she wanted to find out).  We still have the summer (unfortunately she hasn’t been able to find a job) we like to float in the pool together with a “mike’s”.

So, to end this time that I’ve been away; I am feeling better today and hope to get back to Planet Fitness tomorrow.  I have to tell my fellow Cronies that I take Benefactor now at the suggestion of my internist and it has done wonders for my diarrhea.  My stools are somewhat formed now and I don’t go as frequently.  Maybe you should check with your GI docs about it for you?  Have to say, don’t use Metamucil it works in a different way and not good at least for me.  It has to be Benefactor or its generic form.  I hope I start hearing from my old friends again.  I’m sorry for taking off so much time to those who counted on me to tell my story and success.

I need to make a correction.  The correct name for the fiber replacement is Benefiber.  Benefactor is the food I give my dogs.  lol  So,  I don’t think anybody would want to try that.  But the Benefiber really helps the diarrhea.

Living with Crohn’s Disease: The Combat Within: The Present Situation (Post #8)

I think I’ll take a break in my chronological story of my Crohn’s history since I’ve had some trouble that I feel I should talk about.  It started after Christmas.  I got what I think was the H1N1 flu.  I was laid up in bed for about two weeks with that.  However, some of the meds I have been on have caused me problems.  I have a Crohn’s flare up at the present but don’t feel it’s as bad as I thought.  I think it has something to do with the medications.  Not only am I on Remicade  which is an immune suppressant to work on my Crohn’s disease since nothing else has ever worked–prednisone is the only thing that has ever done anything but it doesn’t throw me into remission, it just gives me the nasty side effects that I have mentioned before in my other posts.  I’ve tried methotrexate which works for some and is a chemotherapeutic agent, but it caused my liver to react badly (as noticed by liver enzyme tests) so I had to stop it immediately.  I have been on Remicade for about 5 years now.  I take immuran which is another immune suppressant (it’s also given to those with organ transplants to help prevent rejection) all in attempt to keep my immune response to Crohn’s disease to a low-level.  I have to take this with the Remicade so that the remicade will keep working, so far it has.  However, I have other problems from the loss of my ileocecal valve (the valve which separates the small intestine from your large intestine).  One thing the valve does (it’s a one way valve “down”) is to help prevent the flow of colonic bacteria into the small intestine, some of the colonic bacteria isn’t “good” and the small intestine is not where bad bacteria is supposed to be.  I also take alternating antibiotics for bacterial overgrowth which is a result from the loss of the valve and also getting caught in wet,dark, small places such as adhesion areas,and strictured areas.  The antibiotics I alternate with are Ciprofloxacin–which is a broad spectrum antibiotic, meaning it will take care of gram + and gram – bacteria; metronidazole (also known as flagyl) which will take care of gram – bacteria and also bacteria known as Clostridium difficile which results when the antibiotics you take cause overgrowth of bad bacteria by killing off all the good bacteria; xifaxan, which is an antibiotic that is not absorbed into your entire system, just your gut (which is always a good thing, less side effects from the drugs);   I sometimes take tetracycline; I also try to alternate with Florastor which is an over the counter probiotic recommended by my doctor instead of acidophilus to recover from antibiotics.  I really like the Florastor, it helps a lot.   So, I alternate with all these antibiotics, it’s not easy determining which one to take and when to take it but when I start feeling the diarrhea getting much worse as well as the cramps, I switch.   I feel this is what happened to me over the last two weeks.  Not only have I been having a small flare but the bacterial overgrowth took on a major part.

I had just seen the doctor with no real advice given except to try the xifaxan and flagyl again.  I had been on Ciprofloxacin and Flagyl as directed by my doctor for about a month since nothing was working and I felt my Crohn’s was worsening.  I felt the two of these caused a bacterial overgrowth.  One problem, since I had the flu, I felt as though it ended up in pneumonia as it usually does (since I also have asthma)so I stayed on the Cipro (Ciprofloxacin) and stopped the flagyl.  I stayed on the Cipro for at least 7  days after the flu.  This layed me up for another week since I had massive diarrhea, all liquid.  I couldn’t eat, since whatever I ate or drank came boomeranging out of me as soon as I took it in.  I stayed with the fluids though.  At one point I was having diarrhea 30 times/day.  I had to wear “diapers” since I was incontinent.  Embarrassing to admit but I never know when I’m going to have an accident.  It bothered me at first but I have no problem with it now.  Now, the people I know, next time I see you, don’t go looking to see if I have a diaper on.LOL   Anyhow, to get back to these past weeks.  Christmas was great, things didn’t get bad until around New Year’s I think (who keeps track).  All I know, is I’m no longer taking the Cipro, I am taking the xifaxan and Florastor which seem to be working well.  I’m down to approx. 8 times/ day and haven’t had an accident in a few days.  So, I’m getting better.  I’m eating a light diet, like eggs and toast and doing well—-it’s not running through me anymore.

I’m also exercising again.  I’m doing the Wii Fit and we now have the Wii Fit Plus which I have not yet tried.  My family also joined Planet Fitness with their $1.00 special registration for the New Year, and their $10.00/month fee.  I’m talking about money here because this disease is not cheap.  God help those who don’t have health insurance.  Remicade is in the area of 12,000-15,dollars a treatment which I get at short stay at the hospital every 8 weeks.  Thanks God its covered.  Even though I have ins coverage the deductible is high for this insurance as well as the co-pays but I think it’s the way of all health ins now.  My co-pays are approx. $300./month and that doesn’t include things like over the counter meds like Florastor and constant need for adult diapers.  My dental bills are also enormous –my teeth are also so bad because of my disease– the dentist says its related to all the acid production (I also take something for that twice/day–nexium).  Even the teeth I have gotten capped in the past  are getting cavities on the bottom, and I’m using a special fluoride tooth paste and prescription rinse for this.

Now that I’m back on the path to recovery, I shall get back into quilting, already said working out and cooking for my family.  I was so slacking when I was sick, I was too sick to make supper.  But my husband and daughter have been very supportive of me.  I’m so lucky to have a family like this.  I’m back!  I “grinned and bared” it (haha) and now its on to the next day of my life.  Remember don’t look back unless its to look back at things that might have helped you during your down time. Live in the present, if all you can do is get through it then do it, “and this too shall pass”, and live day-to-day!  Hope you all had a happy New Year and have set some great goals.    I know I have!  I’ll be here next week!

Living with Crohn’s Disease: explanation (post #7)

Am so sorry I haven’t written this week, when I expected to resume my posts.  I’m a bit tied down with a severe Crohn’s Side “Effect right now and don’t feel like doing much of everything.  I’m not eating at all.  Trying to calm my bowels down.  Have severe diarrhea and am not sure if its the antibiotics I’m on or the Crohn’s itself or a combination.  As soon as I feel better I’ll write.  I’ve been lying down mostly.  I’ll get back to you by next week’s post date (Tuesdays).  Until then people, I hope you all stay well.  I’m going to try and kick this thing into remission, whatever it may be–antibiotics, or Crohn’s.  I’ll let you know how I make out!   Mary

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!

Living with Crohn’s Disease and Everyday Life for a Teenager (post #5)

   After the summer of my brother’s death, Crohn’s disease still out of control, I returned to high school as a sophomore.  It was back to the daily hum drum of life.  Things remained the same with my dad.  He kept having surgery and admissions into the hospital because his Crohn’s was also out of control.  My brother, Paul, managed to be ok  during this time, not requiring any more surgery.  My brother, Frank, started a taper from the prednisone.  I was not so lucky (not that they were lucky in the future). I continued to lose weight, have abdominal pain, severe diarrhea and night sweats (which is another symptom of inflammation).   It was hard to sleep with the sweats, pain, getting up to go to the bathroom and with my father in the room below having such terrible pain (I could hear his moans).   It was difficult to  go on a date.  I would have severe gas then bloating and  pain. I continued to worry about my grades.  I` became interested in boys but felt that I would never have a boyfriend. When I went on a date I had to try and hold the gas in as well as the bowel movements.  I didn’t want to embarrass myself by asking a date to stop the car or whatever we were doing so I could go have diarrhea.  During  this time for some reason, I had continuous gas, my stomach blew up like an air balloon and I couldn’t let it out.  The smell was horrific when I did.  I’d have to wait until I got home which was almost impossible.  I felt this contributed to the worsening of my Crohn’s.  By not going to the bathroom when my body told me too I was holding things inside making it more possible for fistulas to form (fistulas in Crohn’s disease, are abnormal connections from one part of the intestine to another part of the intestine, or to another organ or structure (such as the bladder) or to the skin.  Many of these formed during this year.  I continued on the prednisone and antidiarrheals with no other medications.  I maintained a strict diet.  I tried to cut the stress in my life but when you’re that young it is hard. 

   As I tried to continue to live a normal life my feelings were left bottled up inside.  I talked to no one about the consequences of my Crohn’s disease.  I ended up with an abscess from peritonitis (an abscess in this case occurred because the disease caused a perforation in the wall of my intestine thus leaking fecal matter into my peritoneum–abdominal cavity–).  Of course, I had no idea that I had an abscess until I was operated on the following summer.  I had  a constant pain in my abdomen in the area of the abscess.  (I did not develop peritonitis because the abscess kept the matter from my intestines sealed.)  I started to run high fevers however especially at night.  I would continue on this pattern, most time only drinking clear liquids for meals to decrease the pain, for the entire school year.  I would keep all my feelings in me regarding the things adolescents think about at this age.  I couldn’t rebel I needed my parents.  I was the perfect teenager.  I never really dated.  I looked like I was 12 yrs old, my growth was still stunted (partly from the Crohn’s disease and partly from the prednisone).  I continued to get teased about my appearance (moon face, “chippy”, shorty etc.).  I tried to take everything with a grain of salt but the teasing still bothered me.  I can’t tell you how many school days I missed due to this disease.  I was very lucky because most of my teachers knew I was a good student so I wouldn’t have to make up a lot of the work I missed, otherwise I probably would not have moved on to junior year.

   Finally, my body could not take it any longer.  I wasn’t taking good care of myself at all.  I have to admit I cheated on my diet, eating things I shouldn’t have and worried about needless things.  I also went with my mother  to visit my dad in the hospital, and he was in often.  If I didn’t do that, I’d stay home and make supper and do the dishes for my brothers and myself.  I also didn’t always contact the doctor when I should have.  Please don’t mismanage your disease like I did.  I paid for it.  Now, I know that it wasn’t my fault (but not back then). People with Crohn’s disease or any chronic illness tend to blame themselves for having the disease.  No matter what, Crohn’s disease is not your fault.

   It is a wonder I made it to the end of the school year.  However, I collapsed at the end of the school year and had to go in the hospital.  I know if I had taken better care of myself and contacted the doctor when I should have and maybe missed school on the days I pushed myself  I would not have had such complications as an abscess and multiple fistulas.  I should have gone into the hospital for bowel rest during the school year which I would not do.  Therefore, I had a long hospital stay.  I’ll get into my hospital stay next post.

    I made it.  Despite my not following the doctor’s directions on my health (sometimes I would cut the prednisone to almost nothing, my mom wouldn’t know anything about it, I know that also contributed to the worsening of my disease) I made it, but I also payed the price.  Think about it though, I was an adolescent looking for my independence and identity, I wanted to do what I wanted.  And I did without regard for the consequences.  Teenagers have this “thing” where they think their invincible.  I found out fast that I wasn’t. 

   I hope you take heed of what I did and not do the same thing.  Back then, the only thing that was effective and tried on me was the prednisone.  There are so many more drugs and treatments now that there is no need for anyone to end up like me.  I’m feeling better now because of the new treatment of remicade.   Any teenagers out there with the disease, don’t do what I did.  Follow your diet and medicine regime, in the long run it is a better idea than mine was. LOL  Besides being faithful to these things develop a hobby or something to distract you from the pain and stress, it does wonders.  Don’t be negative and allow the “bad” chemicals take over your body.  Be  positive and allow those endorphins to run free–it’s your body’s natural pain reliever.   Until the next post stay well.

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”.

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!

Living with Crohn’s Disease: The Combat Within/pictures and my experiences

Living with A Diagnosis of Regional Enteritis (Crohn’s Disease) (post 2)

     Not wanting to go out of my comfort zone, I was taken to the ER at Boston’s Children’s Hospital (out of my comfort zone!!).  What a terrifying experience for an 11 yr old.  Suddenly, I was whisked to an exam room and the room became filled with at least 8 doctors and other staff.  They were not very attentive to me personally which caused even more anxiety.  I can still remember one foreign doctor saying, “Did you pant your nalls?”  I had no idea what he was talking about until he lifted my fingers and pointed to my fingernails.  Then I figured it out.  My memere (french for grandma) was wonderful to me and used to give me a manicure every week, a pleasant memory amidst the madness.

     With my severe anemia and state of malnutrition it was clear they were going to admit me.  I became very fearful as they told my parents it might be leukemia or some form of cancer.  I was put on the cancer ward with patients with similar problems as well as cancer. 

     I was crying unceasingly when my mom and dad were about to go home.  I wouldn’t let go of my mom.  There was one doctor who came over, knelt down beside me and gave me a hug, comforted me and said everything will be ok.  I felt a bit better, enough to allow my parents to leave.  To this day, I remember that doctor’s name;  Dr. Bear, don’t know if I’m spelling it right but that is how he was able to calm me down–his name.  There were a couple of “sick” jokes because one of the nurses’s names was nurse Teddy.  If they were to be married she would become Mrs. Teddy Bear.  It sounds a bit lame but humor plays a large role in how we cope.  A sense of humor is a definite bonus to have as a quality when you have Crohn’s or any illness for that matter (and I’ve got one!)!  They got me to laugh (hey, at that age it was funny)and my parents went HOME.

     At night I could see the city lights which appeared to never turn off.  I had a roommate which was another thing I had never dealt with.  I was so lucky to be placed with her.  She was a few years older and was from the Boston area.  Despite her pain and illness she helped to comfort me.

     I had to receive 4 units of blood.  My veins were “bad” from the start.  All they could manage was to insert “butterfly” needles into my hands and slowly it went.  I was tough even then.  I would hold tightly to the bed rails while I was stuck or had to endure any type of pain and thought of Jesus.  I’m sure others deal with pain in other ways, whatever helps you cope.

     I also had my first sigmoidoscopy (later graduating to full colonoscopies).  There is no sedation for those.  The problem wasn’t so much the procedure itself that hurt but instead it was the prep I had the night before.  I had to drink castor oil and all I did was vomit and have diarrhea.  The vomiting was so intense I cried, of course, I wanted my “mommy” but my roommate took over, stroked my hair, got my hair away from my mouth and comforted me.  Somebody “up there” always watched over me.  The next day when I had the procedure I began concentrating on becoming the stoic person I am today (although I am trying not to be so rigid these days).  I held tightly to the rails and didn’t make a sound.  And people let me tell you it is ok to make sounds, cry or do whatever you need to do save for kicking the doctor in the face!

     I was in the hospital for a week.  My diet became that of clear liquids and intravenous fluids.  I endured many diagnostic tests.  I had my first Barium series.  Oh, back in the day, it tasted so horrible I almost puked several times.  I can remember the pain being worse on the abdominal areas the doctor would push with the “rubber poking tool” (for lack of a better term) while doing the series.  I knew that couldn’t be too good.  But, that wasn’t the worst of it.  The worst of it was that it was approx 9 at night.  I was left to wait for someone to bring me back to my room.   I was left by myself in an empty, lonely corridor for one long hour.  I didn’t know what to do.  I sat in my wheelchair with tears streaming down my face after having time enough to think about how alone I was and how much I missed my parents.

  It was after these tests that they made the diagnosis.  “You have regional enteritis” is what I was told.  Try and tell your friends what that means, it didn’t matter they had never heard of it.  It was always a bit difficult to explain to them what it was exactly.   I was lucky to have a close family.  I remember all of my siblings even my little brother Tommy, who was 5 then came to visit.  I say this because he was so special to me and everyone he came in contact with.  He was killed a few years later but I’ll get to that in future posts.  My best friend called, I was so excited.  Friends are so important especially at that age.

     I did meet some nice people and when I wasn’t being poked or prodded I got to do some fun things with the other children (haha, like wheelchair races).  I remember one day in particular.  I was a big Red Sox fan.  Sparky Lyle came to visit.  Back then he was one of the best relief pitchers around and he played for the Sox!  I was so shy back then and stupid!  I couldn’t bring myself to talk to him never mind get his autograph.  I’ve kicked myself for it ever since (so didn’t my brothers, lol!).

     Finally, I was put on a strict diet and seen by a dietician who taught my mom and dad how to cook foods for me and helped me with my diet.  My diet back then was low-fat, low- residue, no roughage, no lactose (dairy)!  It wasn’t like my diet today (experiment and stay away from foods that bother you).  It was definitely hard to follow.  I’ll admit I did cheat at times.  I was also placed on azulfidine tablets 500 mg 4times/day (which had to be crushed since I couldn’t yet swallow pills).  My entire family had to make adjustments  as my mom was not going to cook several different meals!

     In order to be discharged there was one remaining problem.  You see my parents didn’t like driving in the city of Boston (we were from a small town in NH) so they wanted to find a doctor near us.  The glitch was, I couldn’t go home until they found a GI specialist.  Well, there were no pediatric GI doctors where we lived and only 1 GI adult doctor in our area at that time.  He wouldn’t take me since I was a child (and I think he got a good look at the X-Rays which turned him off).  The closest I could find was 50 min away (Boston was only 1hour and 15 min with traffic)and he was an adult GI specialist that decided to let me into his practice after seeing me.  You’ll see in later posts whether this was a good idea or not. (Hind site is always better!)

     So that’s the story of my first hospitalization.  I learned to start my new life with a diagnosis of regional enteritis (Crohn’s Disease as is popular now).  I  will talk about how hard it was dealing with it at that age, but I coped!  With the help of my wonderful family, I coped!  I was in 6th grade at the time, but I coped!   My memere helped me cope!  My friends helped me cope!  Jesus helped me cope!  Humor helped me cope!  All of these provided me with the inner strength to cope! (there are 2pages numbered and 2 posts so far, this is my  second post)

Living with Crohn’s Disease: What is Crohn’s Disease and a Bit About Me: Pictures (page 2)