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My Crohn's Life

Inflammation

I have the results from the labs.  Long story short–inflammation.

Why have I spent the last 12 months inflamed?  Seriously.  After my surgery in January I was told the disease was removed and it would take time for inflammation to return.  NOPE. It can back and it was an angry beast.  Medication is not taming this beast.

So here it is, less than 30 days away from my one year anniversary of being diagnosed and losing a chunk of guts and I still haven’t figured out the trick to being well.

As a side note, I may look back at a later point to see if I can pinpoint a time when this weird toenail/fingernail thing started.  My nails have thinned and are spoon-shaped.  Doctors do not seem concerned with this.  They are so thin they just rip off.  I haven’t had to clip them in months.  Actually, even filing them can cause them to split.  Anyway, now I have pain underneath my nails-especially my thumbs.  The hell is this?  It feels like a splinter is wedged between my nail and the skin under my nail.  There is no splinter–it just hurts like one.

Also…I can no longer hear the term “butt hurt” without making a face.  This is no joke.

Buckets of Soot and Poo

WARNING:  Please do not read if you are sensitive to such issues.  Also, it is likely that inappropriate language will be used.

When I was in high school, I was 5’7″ and weighed just a little over 100 lbs.  I did not have an eating disorder but I refused to eat dairy and red meat because it made me feel so ill. Well, I may have been able to be diagnosed because I was underweight and did restrict dairy and red meats.  I also avoided many junk foods because they just taste bad.  So maybe I did have a disorder of sorts but I believe it was more Crohn’s related–I just wasn’t aware I had Crohn’s yet.  When I was 20 years old, I weighed 134 lbs the day I gave birth to a happy and healthy 7 lb. baby girl.  Two days later, my arrival at home was in my pre-pregnant jeans and t-shirt.  My weight had returned to the 115-120 lb. range.  18 months later, I was delivering another child and weighed 131.  This time I had a happy and healthy little boy.  I was never told I needed to gain anymore weight through my pregnancies.  I continued to be active and walked/ran and hiked throughout both of my pregnancies.

Eventually, my weight gradually increased to the 130-135 lb. range and I was happy with this.  I looked healthy and had plenty of energy.  This is my favorite weight range.  In 2010, I had a hysterectomy that included both ovaries.  My weight increased to 150.  I was not happy with this so I increased my daily walk from 2.5-3 miles to 5-6 miles.  Cutting unhealthy fats isn’t really an option because I do not eat them and really have never eaten them.  Potato chips and snack cakes taste like vegetable oil to me so I do not really have much interest in them.  I do not eat dairy so no ice cream for me!  I even had my thyroid testing but everything was normal.  I was given advice to eat no more than 1,200 calories.  I did not follow this advice.  I just maintained a 300-500 calorie deficit daily but did not lose any weight.  I did not gain any either so I just accepted this as my new weight.

When I went to the hospital in January of 2016, I weighed about 150.  I am now up to 165. When I say this to friends it sounds like “one hundred and sixty-fucking-five” because I still can’t believe I weigh this much.  Most people with Crohn’s are worried about weight loss and how to maintain or gain some weight.  I have gained and gained!  I am so frustrated with it.  I do not eat enough foods to support this weight increase.  I am taking Colestipol, Lomotil and Entyvio.  I have continued to gain and have been on Methotrexate, Humira and now Entyvio.  The only medications that have not changed are the Colestipol and Lomotil.  I am at a loss.  I have no idea and the doctors do not seem to be concerned with this at all.  Even when I mention that I am eating around 500-1200 calories daily, the doctors (both GI specialist and primary care) just continue–business as usual.

It has gotten so serious that I step on a scale each morning.  If I am more than 165, I will not eat or drink anything but water that day.  I eat one meal per day and it is usually a banana, rice milk and peanut butter smoothie.  Sometimes I will have this and a light dinner (baked chicken, sweet potato).  On the weekends, I add black coffee.  I take a daily multi-vitamin.  I guess I am quite worried with the direction my weight is headed and the lack of concern the doctors have.  If I can’t get this under control things will be bad.  I realize the potential for a complete shit storm but I also refuse to gain anymore weight.  I have tried healthy ways to maintain/lose and have given in to new weight goals several times but now I am unreasonable.  I used to be happy with 150 and now I have to remind myself that 135 is not going to happen.  Part of me believes that it can and maybe then I wouldn’t have so many Crohn’s symptoms.  The logic!  If I’ve had Crohn’s my entire life, it only bothered me once I accepted having some fluffy.  For now, I will continue to remind myself that these ideas are like buckets of soot and poo.

Polysorbate 80

So I have been insisting that Entyvio is making my symptoms worse.  Doctor #5 has been struggling to believe this.  After being awake for nearly 24 hours with horrible diarrhea and very little appetite a new determination to came to prove that I could be right.  I started by looking up the inactive ingredients to Entyvio.

  • L-histidine
  • L-histidine monohydrochloride
  • L-arginine hydrochloride
  • sucrose
  • polysorbate 80

Unfortunately, I have yet to find a way to link the results of the studies without the reader paying for a subscription.  Polysorbate 80 is an emulsifier used in a plethora of products.  Georgia State did a study on emulsifiers that included polysorbate 80.  The effect on mice was an increase in inflammation of the bowels.  Of course, humans are not mice but it is suspected that this same result could be replicated in humans.  Maybe I am wrong but I have always suspected that is why they begin research studies with mice.  So why is this polysorbate 80 included in a medicine to treat the exact symptom that it may cause?  Maybe it is the only option?  I am not able to answer the question without sounding like some conspiracy theorist.  If you would like to find this study yourself, please look for the study written by Georgia State University microbiologist Benoit Chassaing.

Moving on….

Sucrose.  What is this?  Well, it is sugar.  Nearly everyone consumes sugar.  One of the very first things I was told by the dietitian was to limit my consumption of sugars.  She explained that sugar can decrease healthy bacteria in the gut.  After a few google searches, I was able to determine that it can cause migraines, diarrhea, constipation, and weight gain.  I typically am not the person that would blame weight gain on medication.  I believe reflecting on my habits needs to happen first.  However, I used to eat whatever I wanted and my weight was a happy weight.  I was just diagnosed with Crohn’s in January 2016 so it isn’t like I am comparing my adult weight with an unrealistic adolescent weight.  The only time I was able to get back to my normal weight is when I was not taking medication for Crohn’s.  Additionally, since January, I have made some major dietary changes.

I used to drink 4-6 cups of coffee per day and these were all loaded with sugar and non-dairy creamer.  I now only have one cup of coffee on the weekends and only if I am not on-call.  I no longer add any non-dairy creamer or sugar.  I used to eat at least 1 piece of candy or a candy bar each day.  I now eat 2-4 tangerines or clementines daily to satisfy that sweet craving.  I have never been a fan of potato chips or anything fried.  It just tastes like oil to me so no changes in that area.  The foods that I have always eaten have been decreased significantly because I can no longer graze all day long.  I am limited to one meal per day if I want to leave my house.  I am still making sure I get plenty of healthy fats but I may not be absorbing them as 4-5 feet of my intestine has been removed.

L-histidine can decrease metabolism efficiency.  It can contribute to mood disorders.  It makes your kidneys work harder.  The positive is that it has been proven to help intestine muscles slow their roll.

Vent session over.  Mostly.  At least I have a project to work on after work this week.  I want to have solid reasons for requesting that Doctor #5 discontinue this dreadful medicine.  I may return and write about my conspiracy theories surrounding pharmaceuticals and doctors.

 

Entyvio

WARNING:  May contain inappropriate language.

Doctor #5 presented this as a drug that he believes will work well for me.  Why?  Very few side effects.  Well, huh.

My first infusion had to be stopped only moments after it began due to a headache.  That horrid brain pain has decided to become a permanent resident in my head.  The fatigue is worse than anything I have ever known.  Even more strange, I feel depressed.  I love my job and since Entyvio, I do not want to go to work.  It is like separation anxiety when I have to leave my bed.  I really do not want to.  I used to miss going to my morning run or my evening walk, signing up for every 5K I could find and playing with my dogs.  No more.  It is very difficult to describe the level of disinterest I currently have for anything and everything in life.  This is my favorite season and I love to be outdoors in the winter.  I have gone outdoors once.

Yesterday I was scheduled for my second dose of Entyvio.  I woke up and had pain in my groin area.  I continued with beginning my day and realized I had swelling in a lumpy pattern.  The left side of my neck  hurt to touch it and also had a swollen lump.  I called Doctor #5’s office.  No answer.  Shit.  This is what happened the last time I had an issue on infusion day.  I called my PCP (primary care physician).  I was informed she is out on maternity leave.  There is a fill-in available.  I explain that I have some painful swelling and I am asked if it could be lymph nodes.  Sure, it can.  So I googled where I might find these things and sure enough, I was able to confirm that it is likely lymph node swelling.  She then informs me that she will have to do some research before telling me to go forth with or cancel my infusion.  I am pleased with this because I have another 3 hours before I need to be there and I provide the nurse with this information.  She tells me that I should hear something before then.

Fast forward to infusion time.  I begin my infusion and seem to manage well.  My heart is racing and I do not like that feeling of fullness followed by the racing heart.  I close my eyes and begin a meditation.  About 30 minutes later, I ask why I haven’t finished my infusion and the nurse seems quite frustrated and apologizes as the machine had decreased the speed of the infusion quite significantly.  She increased it and walked away.  The headache that now lives with me began beating the drum to the beat of a migraine.  Fantastic.  Within minutes, the infusion was complete.  As the IV is being removed, my phone rings.  Obviously, I can’t answer.

When I returned to my car, I listened to my voicemail.  It was my PCP’s office letting me know I should absolutely not have my infusion today.  The reason for the lymph node swelling must be figured out first.  The hell?  That would have been good information to have about an hour ago.  I did not return her call or even feel a certain kind of way.  I have been experiencing an almost numbness lately.  Instead of dealing with health issues that now consume my life, I decided to complete Christmas shopping today.  I have had three items left to purchase for weeks and I have felt rotten so I have not gone.  I finished my shopping and returned home.

This morning I have had a fever that comes and goes.  99.5 F has been the highest it has gone.  I left a message with Doctor #5’s office.  I work Monday – Wednesday this week so it looks like I will just have to deal with whatever is going on. I stepped on the scale and have gained another pound.  How frustrating.  If I am going to continue to gain weight I should at least be enjoying foods that contribute to such a thing.  I really wish someone would figure this out as I feel like I could be teetering on a slippery slope with the weight gain.

Combining weight gain with the inability to eat foods unless I am home are two ingredients for a recipe I do not care for.  I already avoid eating and only do so to survive.  I do not need incentive to avoid meals for weight loss benefits.

 

Entyvio

Okay, so several posts in and I finally feel like I’ve shared a majority of my story.  Have I skipped many things?  Absolutely.  These things will certainly come up in later posts.  I have decided I need this outlet.  I actually slept after the first night I posted.  People in my life would be tired of hearing me complain so I just don’t.  I smile and get through the day even when I wish that Crohn’s would just kill me quickly.  Sometimes I wonder what I did to deserve such a painful and miserable existence.  I hear people tell others to be thankful for each day given and I wonder if that is even legitimate.  I often weigh the pro’s and con’s of living.  I am here for my family but how much are they missing out on because I can’t go or eat the things they can.  At times, my children help gather things I need or complete chores that I am unable.  What a rotten way to spend teenage years.

Anyway, my daughter drove me to my first infusion.  Several things had happened that morning that made me question whether or not I had made the right decision.  My medication was lost initially. Once it was found, it was discovered that it had not even been delivered yet.  After hours of phone calls, I was ready for my infusion.  Almost ready.  I was dehydrated.  Of course, I was dehydrated.  I am either vomiting or I had diarrhea a majority of my day.  Every day.  So, fluids first and medication later.  Not even half way in to the first infusion I had a blinding headache.  Light sensitivity, nausea, and neck pain were nearly unbearable.  I knew the infusion was only 30 minutes long so I decided to use meditation to get through it.  The nurse monitoring me noticed my skin was very pale.  She expressed how serious it was to report side effects so I did and the infusion was stopped.  I was so frustrated and thankful at the same time.  She was looking out for my health but I just want my medicine to see if this is it.  I want this to be my miracle medicine so badly.  Eventually, the medication is restarted.  I was again asked about side effects and I may have told her I was feeling amazing.  She actually laughed and said she knew better but completely understood.  After my first infusion was complete, I had to stay at least an hour for observation.  My teenage daughter was ready to climb walls.  She agreed to drive me but did not realize that this could be an all day event.  It had been nearly seven hours and she was irritable.  She drove me home and didn’t say much.  When we got to the driveway she asked why I lied and told the nurse I was feeling amazing.  Ugh.

Teaching my kids to be honest has always been a priority.  There have been times I would have loved to lie because it would have been beneficial in some way but I did not.  Telling the truth in my household is just the way things are.  No matter what is said, there is a mutual understanding that it is coming from a place of love.  It is everything in our household.  I found myself admitting that Crohn’s is a beast and while I am very happy with a majority of the things in my life, Crohn’s is like a sick and twisted torture treatment that can suck the joy out of any event without any notice or reason.  While I initially believed that this was information a teenager not be concerned with, I have since decided that it is important for me to stop hiding my bad days.

 

Doctor #5

I don’t remember much about Doctor #4 other than he advised me that he had gone to medical school and I had not.  I reminded him that I respected his decisions as a doctor but I also believed that there was no person in the world more interested in my well-being than myself.  Doctors are doing a job each day and I am just another patient.  I was never raised to accept what I was given without doing my own research.  I would think a good doctor would appreciate my involvement with my own care.

Sitting in bed one night, I told my husband that I was finished with Crohn’s.  My decision was not being treated any longer.  I hadn’t been on medications for over a month and seemed to be doing ok.  I was drinking a rice milk and banana shake daily and my weight was stable.  Honestly, I have no idea how I am so fortunate but maintaining my weight has not been too much of a struggle.  The first few months were tough but since then, I’ve done well.  My husband talked me into trying ONE more doctor.  He called his step-mom and asked her for her opinion on doctors in the area.  He explained that he needed a really good one because I was only trying one more doctor before calling it quits.  She gave him the name of a practice and her opinion is that any doctor with this group would be amazing.

I called and set up an appointment.  I explained the first appointment how rotten of a patient I can be.  My new GI specialist recommended Entyvio and asked me to research it and give him an answer in a few weeks.  I agreed to starting Entyvio.  Doctor #5 seems to order tests without me asking.  I almost never have to advocate for myself because he seems to have everything taken care of before it is an issue.  I think I may have found a doctor that I can work with for awhile.  I hope this is long-term but I really don’t want to get excited yet.

Doctor #3

I decided to try seeing doctors in the county where I live instead of where I work.  I explained that I had been taken off of Methotrexate due to liver function issues and side effects and had been taking Humira.  Humira was causing some serious side effects as well.  I explained that I had disclosed these side effects previously and was told that they were all normal.  I had decided that the swelling was extreme so I had taken pictures and sent them to the Humira Ambassador.  This person told me to stop taking the medication immediately however my doctor wanted me to continue.  This doctor had me inject a dose in a different area and come in to monitor results.  I did this.  His face was nothing less than horrified when I showed him the reaction site.  He took me off of this medication immediately.  He suggested that I take steroids and I explained that there was no way I could do this.  I explained how sensitive I am to medications and asked that he please suggest another medication.  He agreed and stated there would be no medication for a few weeks and an upper and lower endoscopy/colonoscopy would be performed.

After the colonoscopy, I woke up and my vision was blurry.  I have had several surgeries and never have I had blurry vision.  I went home and was unable to sleep.  I kept waking up with night sweats and a few times I woke up angry.  Not just irritable, but I wanted to push my husband out of bed because he was snoring.  I wanted to throw the remote at the television because people on it were laughing to hard.  I was angry with my dog, Katie, because she was sleeping too close to me.  This was not like me.  Then I became upset and started crying.  By the time the sun was rising, I had cycled through angry and crying at least a dozen times.  I woke my husband up and insisted I had been given a steroid.  He did not want to say much considering my emotional state but I could tell that he thought I had lost my mind.

I was on a mission to prove I was given a steroid.  I had signed up for online access to my medical records so this was the first place I checked.  I had been given a steroid!  I should have been happy to have an answer to my issues but because steroids make my moods swing wildly, I was sad and then angry.  I realize that taking charcoal will help some toxins that are ingested but most likely not help with detoxing the steroids that were given via IV.  I was in no state of mind to be logical, so I took lots of activated charcoal and charcoal pills.  I drank water with sea salt and sugar the rest of the day.  I made a few calls the doctor’s office to make him aware that I would never be returning to his office.  He did not apologize but instead claimed that the anesthesiologist was the person that gave me a steroid and he had nothing to do with it.  He was my attending physician performing the procedure and right or wrong–in my opinion, it is his responsibility to see to it that I am not given medications that I do not want.

Even the follow-up call for the results of my procedure were generic and lame.  I remember him stating that I had 6-10 ulcers somewhere but when he called, he basically said that I was “a bit” inflamed.  I was pretty frustrated with this because the entire time I was preparing for this procedure, I stated that I didn’t think it was necessary to use Suprep.  I stated I could stop taking my daily med and maybe take Miralax.  My pharmacist also advised that I not take the Suprep.  Of course I was inflamed.  I vomited violently all night after taking Suprep.  I could barely talk my throat was so raw the next day which I believe are less than perfect conditions for determining inflammation levels but who am I?  I don’t have my P.h.D.

I just assumed that since the manufacturer of the drug states that those that have had bowel obstructions should not take the medication, that I should not take it-mostly because of the bowel obstruction and stuff.  *sigh*

Doctor #2

After becoming frustrated with the lack of care, I transferred to a new doctor in the same practice as my first doctor.  This doctor stated that I should have been given a different type of medication and initially agreed to several changes.  Days later, he reported that he had discussed my health issues with a colleague and decided to not make any changes.  Fantastic, right?

Diagnosed

Growing up, I was sensitive to many foods.  At times, I was so sensitive to foods that I nearly stopped eating.  My grandmother suspected that I should be diagnosed as anorexic and had no issues about confronting me with her suspicions every time she saw me.  Looking back, I was underweight and I was restricting foods but not for the desire to be thin.  I wanted to feel well and the only time in my life I feel well is when I do not ingest foods.

August of 2008 brought a stomach pain that dropped me to my knees while walking.  I had never experienced anything like it.  When I was pregnant with my son, I didn’t even know I was in labor because my pain tolerance is ridiculous.  I was within an hour of delivery when I finally decided it was time and it was too late for pain medication.  I wanted to wait and see what happened and if I would feel better but my husband disagreed.   I was rushed to the local ER where I was told to “stop being dramatic” by an ER nurse.  She was angry with me for vomiting the fluid given so an image of my stomach could be taken.  I was sent home with antibiotics and so ashamed for being “dramatic” that I refused to go to a follow up appointment.

Living for years without proper nutrition made me weak and tired.  I was growing something inside my body that was not a baby.  I had a lump on my right side that I had jokingly started calling, “Angry Bob”.  My primary care physician was unable to see or feel it.  Again, I thought I was just being dramatic so I stopped trying to get my doctor to acknowledge it.  Honestly, I stopped going to the doctor because nobody believed me.  I felt foolish.  I eventually became so tired that I decided to eat anything I craved because my body needed it.  Eating loads of food should have caused me to be overweight but it did not.  I managed to maintain a healthy weight so I assumed this is what I needed.  I thought I had thinking errors that caused me to believe I was not feeling well.  Maybe eating food caused discomfort and it is just part of life.  I continued to eat.

September 2014 challenged my thoughts on this when I had to leave work early due to a reaction to my lunch.  I thought I was dying and I felt panic rushing through my entire body.  I was cold and wet.  Sweat was dripping from my body and the pain!  I couldn’t even tell where it was coming from.  My back?  Stomach?  It didn’t matter.  Sitting in my driveway after a terrifying drive home I accepted the fact that I was going to die within feet of my home.  Fortunately, my daughter saw my car on the security camera and came outside to see what was going on.  She called 911 and I was on my way to the hospital.  Upon arrival, it was determined I had gallbladder issues and my gallbladder would be removed immediately.  I do not remember much until the next morning.  My husband had taken off work to drive me to a city with a larger hospital because something had gone wrong.  I hurt everywhere.  I didn’t understand what they were going to do at this hospital as I had already had surgery and had been released.  If something was wrong they would have kept me, right?  Right?!

I had another procedure that had four letters.  It was miserable and I ended up going full rage on the operating staff after having a leak in my IV and blood spilling out onto the sheets and my legs.  Again, I do not remember much but I remember going home and crying.  I cried for two days.  My employer wanted to know when I was coming back because having a gallbladder removed was a simple procedure.  After nearly 10 weeks, my doctor allowed me to return to work.

I began to eat more than my clear liquid diet and the pains returned.  I was beginning to put on weight and was not eating enough to support the weight gain.  I had gone from 135 lbs to 160 lbs and had no idea how.  Somehow I was maintaining this new weight.  It was as much as I’d ever weighed. I weighed less with each of my pregnancies.  I felt bad.  I finally saw a doctor and was told my thyroid was fine.  The feeling that I was being overly dramatic was creeping in again.

January 2016 was another game changer.  I was diagnosed!  After three days of vomiting, I told my husband that I thought if it continued I would die.  He is a very caring person but over the span of our marriage has become accustomed to my stomach issues.  I eat, I vomit.  He was no longer alarmed when I would vomit for days or he would find me sleeping on the bathroom floor.  It had become our normal.  On January 13th though, I woke him up.  I could barely see and I was vomiting every 12-15 minutes.  I couldn’t keep my balance and my heart was pounding so fast!  I had to take a trash can on the way to ER.  I was unable to complete registration because I was vomiting so violently.  A tube was inserted through my nose and my stomach was emptied for two days.  Upon removal of the tube, violent vomiting pursued.  I had an intestinal blockage and required exploratory surgery.

That exploratory surgery resulted in 4-5 feet of intestines being removed, along with Angry Bob.  He was quite a mass at that point and my surgeon was preparing me for the worst.  My first day of bland food cause more vomiting.  I spent an additional 14 days in the hospital because my care providers could not determine why I was rejecting food.

Thankfully, Angry Bob was not cancer.  The lab confirmed that I had Crohn’s Disease though.  I was happy that I was not just being dramatic.  There WAS something wrong with me!  I had no idea what was going to come next. I now wish I had just been being dramatic and Crohn’s was not even a thing.

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