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My Journey to Crohn’s Disease and how it won’t define my life


To begin lets backtrack a few years....


This journey started 7 years ago, My husband and I had been at the state fair a few days and of course had eaten all of the delicious fair food...then I started having stomach issues immediately. I originally thought I just got food poisoning or a stomach bug and that it would go away, and then it didn’t...
After quite a few months and researching we thought maybe I had developed a Gluten intolerance so I changed my whole diet and was Gluten free for an entire year and even Dairy free part of that time, and yet again nothing changed, I didn’t get any better and in fact I just seemed to get worse.
As time went on it wasn’t only stomach issues, I would get terribly sick, almost flu like symptoms and get so cold there was nothing I could do to warm up and after every one of these episodes it would take at least a day for me to recuperate and I would be stuck in bed or on the couch too weak and exhausted to do anything.
After some more time passed I had a Dr tell me my gallbladder was bad, I refused to have it removed so I again altered my diet to work around gallbladder issues and no change...
So fast forward a few years of dealing with this issue, all symptoms just getting worse, I got to where I couldn’t go anywhere for fear of getting sick to my stomach or being so exhausted I didn’t have the energy to go do all of the things I enjoy in life.
I have never been a person to have anxiety issues but over these years it has taken a serious toll on me and I’ve had to retrain my brain that it’s ok to go do things and that I wont get sick or get too worn out.


 So now we’re up to the summer of 2017. Keep in mind we had not had insurance this whole time so Dr visits were scarce as we had to pay out of pocket.

My Grandma passed away the end of May and not even two weeks later I was so sick I ended up in the Emergency room for the first time, I still don’t know if it was the stress of her passing that pushed me that far or the exhaustion on my body from all of the activities but by the time we made it to the emergency room I was so sick I was severely dehydrated and my organs were shutting down, talk about a scary experience...I will never forget the pain I was in from that day.
After being in the ER most of the afternoon they gave me a few bags of fluids, some pain killers and sent me home with a follow up appointment with a Dr here in town.
Through these Dr appointments Crohn’s was never even brought up as a possibility and they really couldn’t figure out what was wrong with me... I’ll be honest, through this experience I have been a little burned from “small town” Dr’s and hospitals...while I’ve had great nurses ect, I have been in the Er 3 times just in the last 6 months and they’ve given me fluids and antibiotics for whatever they thought and sent me on my way.
In May of 2018 I closed down my hair salon and gave up my livelihood because this has made me so sick and attacked so many areas of my body that I developed chemical sensitivity and could no longer be around the hair products, and on top of that, the last year I have become weaker and weaker and had so many more bad days than good days it made it impossible for me to work.
It has been about a month now that I closed my salon and I can count on one hand the days that I left the house in that time, I have been so sick that just getting up to take a shower is all my body could handle each day.
 All of these facts have come as quite a shock for a lot of people.


 I don’t consider myself too prideful of a person but I also like to keep my life private and didn’t want people feeling sorry for me so no one truly knew how bad I have been except my husband and my parents (even they never saw the full extent of it.)

I am the type of person that likes to be up and around cooking, cleaning, crafting, etc and was to the point I couldn’t do any of those things.
All of our household tasks landed in my husbands lap.
I tell you my husband has truly stepped up and taken our marriage vows seriously, you never think much of it when you’re saying “in sickness and in health” but on top of him working upwards of 50-55 hours a week he would come home and do all of the housework, cooking, take care of the dogs, and myself.
Never once did I hear him complain about any of these things, I am so blessed to have him by my side in this crazy life!
I have always been a believer that everything happens for a reason.
I had been really sick the last few weeks and was in the ER Monday June 25th and they treated me for a UTI, gave me fluids and sent me home... only for my condition to worsen throughout the week.
Then Sunday the 1st I passed out while my husband was helping me shower (I was to the point this
was even too much for me to do alone.)
I have never passed out before and it gave us all quite a scare, of course me being myself...refused to go to the ER that day. I made it back to the couch and stayed there the rest of the day, it literally took all the strength I had to get up to go to the restroom so when my husband had to go to work Monday morning my mother in law came and sat with me as my family was worried about me being alone and passing out again.
I had decided I wanted to go to the ER when my husband got off work at 4:30 but by 3:00 even with resting all day I wasn’t feeling any better and knew something wasn’t right so Joe rushed home and took me to the ER,

 it’s somewhat blurry to me but he said I was barely responsive when he came home to get me.
Here is where the “everything happens for a reason” comes into play...I had the most amazing ER Dr, he immediately saw that it wasn’t just dehydration and starting running more extensive blood work and decided I needed to be transferred to the hospital in Des Moines right away.
I truly feel that if I would have gone on Sunday I obviously wouldn’t have had this Dr and probably would have had someone who treated me for dehydration and sent me home just like every other time.
I am so so beyond thankful for his thoroughness and attentiveness and truly listening to us as we told him all my symptoms and that he wanted to get to the bottom of the issue.
The reason I was so weak you may ask? My hemoglobin levels were down to 6.1...I had been losing blood for who knows how long.
Along with that I was obviously severely dehydrated and malnourished among a whole slew of “numbers” that were much lower than they should be.
Anyone that knows me knows I hate drs, hospitals, getting blood drawn, ect. So you can only imagine my fear when I heard I was going to the hospital and being transferred in an ambulance!
Thankfully they gave me a sedative for the ambulance ride...
After that it was a rush of more tests, blood work, ect. as soon as I made it to the hospital in Des Moines. I finally ended up in my room around 9:00pm.
I ended up staying for 5 days, had two blood transfusions, a “scope” (they weren’t able to do a full colonoscopy as I was way to enflamed), that determined that I have crohn’s disease.
My colon was so bad it wasn’t functioning (no wonder I’ve had so many issues!)

 During my time in the hospital they started me on steroids to bring down the inflammation and IV Iron transfusions.
As I finish writing this I am two weeks home from the hospital and while I’m still figuring out my “low fiber” diet and what I can and can’t eat during my flair up I am feeling so much better!
I am still dealing with fatigue and blood loss so I’m learning to “take it easy” which is so not my strong suit...while taking it easy I’m also trying to find a happy balance of getting up, being active and building back up the muscle in my body that I’ve lost over the last few months.
I’m currently taking steroids to continue to bring down the inflammation and will go next week to discuss my medication transfusion schedule.
This has certainly been a learning process and I know it will continue to be a learning process the rest of my life.
There will be many times of trial and error but isn’t that part of every aspect of life? I understand it won’t always be a walk in the park, there will be days I want to give up and have meltdowns (There have already been a few of those!) But the power of prayer, the Lord, and family is real people!
I have had so many people praying for me and in moments like I felt like I couldn’t go on I have felt the Lord lift me back up and get through whatever situation and I know he will continue to do this for me the rest of my life.
My family have been so supportive as well whether it be prayer, letting me cry/vent, or helping me do the tasks around home that I’m still not able to do.
While most people would have the philosophy “my life is over” I honestly have such an optimistic outlook and am so excited for the what the future holds.

 I’ve had so many people say “Oh I’m so sorry you have this” already and in my mind I feel freedom that I haven’t had in 7 years, there is no more unknown, there is no more trying to figure out what is wrong with me.
Now I’m not naive, I understand that Crohn’s Disease is a serious thing but I also know it can be managed.
There are two types of people in this world, those who let their disease, illness, etc. define them and become a victim, and those who choose to go on with life the best they can.
I choose to not let this define me and rule my life. I choose to get up everyday with a positive outlook, put on some makeup, do my hair, put on a cute outfit, sit in the morning sunlight, say a prayer, whatever it takes to brighten my spirits and give me the strength I need to go through each day because guess what people...there are so many out there that have it SO much worse than me! There are people that aren’t able to get out of bed, dealing with more pain than me, terminally ill, etc. it could ALWAYS be worse...I’m sure I’ll have days where I feel sorry for myself and have a pity party and thats ok too, but always remind yourself it could be worse and get back up the next day with positivity.
I’ve had so many words of encouragement from people, even those that don’t know me well! So even if this only helps one person I hope this comes as an encouragement to someone who may be going through something similar or even worse.

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Chloe Tully said…
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