Life with Crohn’s

As I sit here and type this I am in a ridiculous amount of pain.  It’s not just your typical stomach pain that you would except someone with Crohn’s to have. No, when my Crohn’s flares it’s joint pain, body aches, a feeling of whole body inflammation, extreme fatigue, plus my stomach will hurt on and off.  Not that anyone would ever know it, well besides my husband who I openly whine to (sorry Matt).  For the most part I try not to let it get in my way and I go about my somewhat normal life.  I post pictures on instagram of my day but you don’t see the pain I went through/ am currently feeling in the photos of me hiking/sitting outside/tending to our little backyard homestead/mommin’ around.

I go to work and sometimes I wish I was on disability because there are days when I can’t do much more besides laying on the couch and resting, but I suck it up and go anyway. Plus you know, money does help pay the bills. Unless I am actually glued to the toilet I find that once I get to work I am so focused on taking care of other people (ER nurse here) I forget about my life for a little while.  Sometimes that’s kind of nice.  It puts a lot of things in perspective for sure.

My job as a nurse helps me to realize that life is so short and a lot of people have problems.  It helps me to realize that it could always be so much worse, and that I’m not the only one who is dealing with something.  It makes me grateful for all the good things I do have.  I don’t know about you but sometimes being in pain + being home on social media can suck you into a mini depression. “Everyone’s life is so perfect…. why can’t I just be normal?” I think to myself. Then I go to work and I see how much worse it can be.  I CAN still work, hike, raise animals, take care of my daughter, I’m not exactly dying yet, and not everyday is a bad day.

Lately I’ve been having more bad days than good so it does make me a bit weary at times.  But for the most part I choose to rise above it like I always have since I was diagnosed when I was 16. (I’m going to be 31 this fall)  Crohn’s is a very frustrating disease to live with and if you don’t know someone with it/don’t have it yourself you might not realize what people like me go through.  I usually look “normal” i.e. have some makeup on and my hair done so most people don’t even know I am sick.  I am not super thin either so I get a lot of “wow I would have never guessed you have anything wrong with you, you look so healthy!” remarks when I mention I have Crohn’s or talk about why I do gluten free etc.  I have even had doctors say to me how good I looked while I was in the hospital and obviously feeling like crap. None of my current co-workers knew until I specifically told them I was having problems and just started remicade infusions.

Are you living life with a chronic illness or autoimmune disease?  Do you know someone with Crohn's disease or something similar.  Take a glimpse into the life of someone living with chronic autoimmune illness.
Ice- a girl’s best friend. Notice the knuckles on my hand are swollen too.

I think I have had Crohn’s since I was very young, although I wasn’t diagnosed until I was a teenager. When I was a child I had severe asthma, allergies, and eczema.  I’ve always been sick for as long as I can remember.  According to a naturopath I used to see,  she mentioned those three diagnoses are the “classic trio” for evidence of food allergies.  I remember having some bad stomach aches as a kid but they would go away as quickly as they came so no one thought anything of it.

When I was 15 I started getting some strange symptoms.  First, after my period being regular for 3 years it suddenly became irregular and stopped.  No one thought anything of it because I was young.  But about 6 months after it stopped I began having some pretty bad abdominal pain.  First it seemed like it was only after I ate, but soon it didn’t matter if I ate or not because it just hurt all the time.  I remember laying on the floor in my living room after eating dinner almost in tears but then getting up and pulling myself together because it was Friday night and I wanted to go out with my friends.  Stubborn as a mule folks.  Then the toilet and I were in a serious relationship.  I remember my lowest weight being 119 lbs.  I’m about 135- 140 now.

Eventually through almost a year of testing, 2 colonoscopies, and an endoscopy later they finally diagnosed me with Crohn’s.  That wasn’t the end though.  Less than a year later, and I can’t remember exactly what meds I was on, my immune system was a little too suppressed and I got a bad case of shingles.  Talk about excruciating pain.  Then I got pneumonia and ended up in the hospital.  Because of all the IV antibiotics my Crohn’s flared again.  I finally got 2 doses of Remicade (at the time it was experimental especially for pediatric patients) and then went on Pentasa for the next 7-8 years.  This all happened just before my senior year of high school.  I remember missing quite a bit of school towards the end of my junior year.  It was tough but I always made sure I was tougher.

When I was 25 I decided I had enough of all the medications I was taking.  The pentasa helped but I still had pain and bloating too frequently for my liking.  I also had flares of all over joint pain and feeling like my whole body was inflammed. Every time I went to my GI doctor he just told me that’s how Crohn’s was and didn’t really explain anything to me.  By this point in my life I had been a nurse for about 4 years and knew there had to be a better way than just meds meds meds and still feeling like crap.  Not once did any doctor mention diet or lifestyle to me.  They simply told me they tested me and I was not lactose intolerant or celiac  and since my symptoms were controlled (sort of) I could eat whatever I wanted.

I decided to go to a naturopath and boy did my life change.  The first thing she told me was to eat what is similar to the popular “paleo” diet today.  I was told to try it for a week and see how I felt. At the time since paleo wasn’t a thing. She explained it to me as eating anything that grows from the earth or could be hunted/ butchered/ caught- basically fruit, veggies, meats, fish, and some grains although she told me to do gluten free.  I mostly stuck to rice, veggies, and fish because at the time I was not eating meat.  Within a few days my symptoms dramatically improved.  Random pain gone. Joint pain gone. Night sweats gone. Bloating gone.  Wow this was magic.  I’ve stuck to a gluten free diet since and eventually have cut out almost all dairy.  I try to eat paleo but I will admit I need to be much better about it.

Are you living life with a chronic illness or autoimmune disease?  Do you know someone with Crohn's disease or something similar.  Take a glimpse into the life of someone living with chronic autoimmune illness.
So many IV antibiotics and fluids from when I was hospitalized in 2014 for a week.

Fast forward 2 more years.  I took myself off of pentasa because frankly I was tired of taking it (13 pills a day)  and because I was feeling so good with my diet change I started to question if I actually had Crohn’s or if the whole time it was undiagnosed food sensitivities.  A year after being off my meds I was going through a lot of tough times and stress in my life. I started having symptoms again but I was kind of in denial.  I really had myself convinced that I didn’t have Crohn’s anymore and everything I was feeling was because I was prone to inflammation and I wasn’t being strict enough with my diet.

When I started getting fevers and could barely walk I knew it was time to visit the ER.  I had been ignoring my symptoms for months and when I checked in they found I had 4 abscesses in my terminal ileum where my disease always manifests.  I was in the hospital for a week, unable to eat or drink for 5 days. I had to have laparoscopic surgery to wash out the areas of infection and by the grace of God they didn’t have to remove any part of my bowel.  After a few months of allowing my body to heal I had to go on a strong what they call “biologic” medication.  Similar to the remicade infusion I had in the past, I went on Cimzia injections I had to administer to myself every other week. Good thing I’m a nurse right!? I’m not so sure sometimes hah.

Like most classes of biologics Cimzia and Remicade are both TNF blockers which means they are suppressing your immune system by blocking “tumor necrosis factor” which has been linked to the inflammation in auto immune diseases.  The Cimzia worked for 2 years and I’m still not sure if it actually stopped working, or if being pregnant and the post partum hormune flux is what triggered my current flare.  About 3 months postpartum (October 2015) I started feeling the same old symptoms. Pain, inflammation, fatigue- ugh. They increased my Cimzia and started entocort. It helped temporarily but this spring there was no mistaking those symptoms.

Since I didn’t want to end up hospitalized for a week now that I have a baby, I couldn’t just ignore what my body was telling me.  So here we are again, Cimzia no longer helping, and back to Remicade infusions since they helped so much the first time (although I only got 2 doses.)  My doctors plan is to keep me on the Remicade for a year now and see how I do.  I started every 2 weeks, then I will go again in 1 month, and then it’s every 8 weeks.  I’m praying this will help although I’m sure it will not be a permanent fix.

Are you living life with a chronic illness or autoimmune disease?  Do you know someone with Crohn's disease or something similar.  Take a glimpse into the life of someone living with chronic autoimmune illness.
Photo from my instagram when I first started on the Cimzia. Those suckers burn.

Unfortunately I really was convinced I could beat this with just diet and natural supplements alone.  I’ve read that some people have. I even questioned at one time if Crohn’s was actually a “thing” because I was feeling so good off my meds and with the diet changes I had made.  I wondered if all the patients I took care of with Crohn’s would be able to beat it if they too just changed their diet.  After all, it was working for me… until it wasn’t.

I’m not against western medicine or ‘big pharma’ although I really was at one point in this journey.  If it wasn’t for western medicine I would be dead. No seriously, I would be dead. I would have died of infection in 2014 when I had the 4 abscesses, leaving my husband of just 1 year to be a widower. I did not realize how sick I was until I laid in that hospital bed for 5 days barely strong enough to make it to the bathroom. The IV antibiotics and surgery really were life saving, as much as I did not want surgery at the time.

I still love and advocate for healthy eating, exercise, and naturopathic medicine.  Seeing a naturopath has helped me tremendously in managing my symptoms and finding natural alternatives to some medications that I would probably have to take.  In fact if it wasn’t for my healthy eating I don’t think I would have lasted as long as I did walking around with 4 abscesses, while still working as a nurse 32 hours and going to massage school part time.  The doctors were impressed at how quickly I recovered and I can only attribute that to the fact that I was strong and active prior to my hospitalization.

Are you living life with a chronic illness or autoimmune disease?  Do you know someone with Crohn's disease or something similar.  Take a glimpse into the life of someone living with chronic autoimmune illness.
I still take supplements to help support my body, along with my prescribed Vitamin D, and monthly B12 injections.

This is only a small part of my story, my journey.  Sometimes I hate having this disease and I just want to be able to do whatever I want and be “normal just like everyone else”.  But on the other hand Crohn’s has made me humble. It has made me more compassionate, a better nurse.  A better person, a stronger person, a more resilient person.  It has essentially made me who I am today.  It is part of me whether I like it or not and I have always decided, since my diagnosis in 2001, that I will not let it get me down.

I have always chosen to rise above it no matter how crappy I feel and try to keep a positive attitude.  I have chosen to be proactive in using food as something to help heal me rather than worsen my symptoms. I pray my daughter does not have to go through this or have anything to do with this disease.  At the same time Crohn’s has helped me mature and grow, and has given me so much character, I can’t help but feel like it will be OK if for some reason she does.

Most importantly I have really connected with some of my patients and have talked with fellow “Crohnie’s” as they say, and I think it has helped them in some way, even if it’s just by making them think “Hey! I’m not alone in this.”  I know it has helped me.

I hope by sharing this story it will give those who don’t know anything about the disease or those who think I have it all together a glimpse into the world of living with a chronic illness.  And spoiler alert– I don’t always have it all together. Sometimes I sit at home and don’t ever get dressed.  Other days I force myself to do something and I usually feel better for it.  I also hope my story will help someone with this disease feel like they are not alone, because, well, you aren’t! I’m right here with you, cursing my tendonitis as I try to type this, feeling like my body is falling apart at age 30, sending my husband a text that says “you better trade me in for a new model”.

But my daughter will wake up from her nap soon, the dog needs a walk, and it’s a beautiful day.  I’m not dead yet so hey, I might as well go out and try to enjoy it.  Pain and all.  Like my dad has always said “Why be normal?”

 

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