My Crohn's Story

My Crohn’s Story

I have lived with Crohn’s, Colitis and Arthritis for 26 years now. Thankfully I’ve had more good than bad years. I think it gets to the point after a while that you also get use to living with a certain amount of pain so maybe that contributes to the good years, I don’t know. What I do know is that I’m very fortunate to have so many supportive people surrounding me. 

Grab a  drink and maybe a snack  BEcause It’s a bit of a read

˜Here is my Journey˜

Growing up I can always remember being tired, my body hurting and my stomach just always making noises and doing weird things. Hell my grade one teacher, hi Mrs. Hunt, told me about the times that I would fall asleep at school, or my friend Paula laughing at me because I’d fall asleep on the bus and miss my stop. At home I’d often run to the bathroom after dinner and I’d hear my family yell “you can come out now the dishes are done” or the countless times my parents would take me to the doctors or the emergency room because of pain throughout my body. These where just small parts of my childhood. 

It was my first year in college and I was missing a lot of time in school, some thought I was just lazy and slept through my classes, I was tired a lot and also my knees where in so much pain that it made walking really hard. I was also spending a lot of time in the bathroom. Then my weight starting dropping. My room mate came with me to a clinic (knowing her she probably forced me to go) and that’s when I started getting some answers. At first they were focused on my knees and where going to scope them than this one doctor started asking other things and before long the words “I think yo have crohn’s”  was uttered. One thing led to another and before you knew it I was referred to a specialist back home, and I was getting some test and some answers. My doctor told my parents that I was pretty sick and had likely been sick for many years – from maybe 6-7. We tad always been told it was growing pains, or it was in my head. One doctor even said I had yellow bus fever- you know I was sick until the school bus went pass than I was somehow better.

Not all doctors are great but when you get the good ones you want to told on for dear life. 

The one thing that I remember most from that time is my dad leaving the pharmacy after picking up a prescription and him saying “forget marrying for money just marry for a good drug plan!” Thankfully those meds worked and got me feeling better. I still remember waking up one morning and nothing hurt – that had never happened before and I was 18 for crying out loud. 

Fast forward to me being 21 and meeting a guy I really liked. I went home from my first date and told my mom I’d never date anybody ever again. It wasn’t long that I had a conversation that went something like – So I have this thing called Crohn’s. Thankfully he knew a bit about the disease but we had to have a serious conversation about what it was and how it affected my life and if it wasn’t something that we was willing to sign on for that we shouldn’t continue or relationship. It was then that it was evident he was in for the long haul. It wasn’t long afterwards that i ended up in the hospital for a couple of weeks and when I came out I moved into his apartment. We were married a year and 3 month later. There were also many more hospital stays in that time. 

Not quite a year after we were married our first child was born – Jacob. OMG I felt so amazing during my pregnancy. I ate all the things and had so much energy. It was incredible. My doctor was happy as I had gained 30 pounds and was the picture of health. Than delivery time came and that didn’t go as well but it is what it is. Jacob was born healthy and strong and as any parent will tell you I’m happy it was me that got the shitty end of the stick. The weeks after his birth were really tough as I continued to get really sick from my Crohn’s. My doctor informed me that this seemed to be a normal path for us Crohnies. I wasn’t able to breastfeed nearly as long as I wanted to from being sick my body was getting the nourishment that it needed so there was no way that Jacob was getting what he needed. And I don’t care what anybody says trying to breastfeed while sitting on a toilet just isn’t normal and will make a grown woman cry!

breastfeed while sitting on a toilet just isn’t normal

Our second pregnancy wasn’t anything like our first. I was sick throughout the whole thing and by the end I had only gained 6 pounds, was in the hospital for a week and than had to deliver early because my body was shutting down. Again our daughter – Michaela was born safe and healthy and weighed in just under 6 pounds. Like with Jacob I was sick afterwards as well. Having a newborn and a toddler while being sick was frigin hard but we managed. Two months after my Michaela was born my mom died suddenly and again my body, and heart, was thrown into turmoil. I was hospitalized eventually because my Crohn’s was so out of control. I weighed 104 pounds, I was severely malnourished and dehydrated. I was being fed a through a tube and it wasn’t pretty. In those days it was the thought of my kids that made me keep fighting because when you are this sick and you hurt so much thoughts do creep into your mind. Thankfully I healed and got things back on track and was soon home enjoying life with my husband and kids again. My doctor in Belleville was always amazing to me. He’d often call me at home to see home I was and there were times that when I was sick he knew putting me int he hospital would make things worse so he would arrange home care for me. Even though they are not suppose to help with children my home care nurse did. She would make meals for us, do laundry and just take care of things that needed taken care of. Even though I was the one sick it also took a toll on my husband. He’s always done just as much with/for the kids and at home as I did but when I was sick he focused on keeping some sort of normal for the kids plus he was working during the day and lots of nights he’d be up taking care of with me or one of the kids at night. 

when you are this sick and you hurt so much thoughts do creep into your mind

After a couple years of relative calm in our lives we got the news that Andy’s  company was moving us from Belleville to Montreal. He was already working there during the week and coming home on weekends. However, things were busy so we weren’t allowed to move for a few months. After two years there the company was not in good shape so it was time for us to move on. Before the move I started getting really sick again which ended with me in the hospital for a couple of weeks. I had to beg the doctor to release me so that i could move with my family on the promise that I would not do anything but supervise. Along with this we had to arrange a lawyer to come to the hospital so I could sign a power of attorney as we were closing on our houses and Andy needed to get shit done.  

Once in Ottawa this were good for a long time. A few hiccups here and there but things were manageable. I was working a great job and enjoying life than I started getting sick again. I was fortunate that Andy and I worked together and car pooled because there were many days that I was asleep within 5 minutes of leaving. It was a 30 minute drive home so i was able to power nap. We soon realized that I just couldn’t work a 40 hour a week job. Well I could but I could do it outside of the house and my employer wasn’t able to make accommodations for me so i walked away from a good paying job. It was also at this time that I was put on Remicade as a last resort because nothing else was working anymore. With leaving my job I went on short term leave that morphed into long term than I was directed towards applying for disability pension. I didn’t feel like I could apply for disability because I liked working and could work – just not in an office setting. So I started doing my photography full time. Starting my business led me to social media which opened my eyes greatly. I soon connected with a group that to this day I am proud to call friends. 

On the move again

After living in Ottawa for 10 years we were packing up our house and heading to Hamilton. At the time that we moved Jacob was in grade 11 Michaela grade 10 so not everybody was excited for our new adventure. Well with a new job came a new insurance company. I had to fight to keep using Remicade as it wasn’t there first line of defence but finally after about 3 months I received my treatment. It was a good reminder for me as to why I felt as good as I did. I’m not stupid enough to think Crohn’s will ever go away but I hadn’t been sick until there was a delay in my treatment cycle. Up to this point I’d been going every 6 weeks for the max dose so yeah I needed my medicine. Before Andy accepted the job we had the conversations and got things ok’d for Remicade but it took a long time to get everything finalized. When I was just put on this treatment back in Ottawa it took our insurance 6 months and I just kept getting sicker and sicker in the meantime. 

We have been in Hamilton for 3.5 years now. My health the majority of the time is good (when I take care of myself) Michaela moved to Toronto for her first year of school, Jacob started at the local college so lives with us, Andy is back doing more music and still liking his job and me – I’m still doing photography but I also work for the local hospital as a web specialist (I work on a website adding and removing content as well as some design work). Hamilton suits us well. 

I know there are still rough times ahead but for me it’s more important to focus on the great times in between! 

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