Originally Published May 6, 2015
I know it’s been a while. I’ve been busy. I’m a bad blogger. I promise I’m working on things, I just don’t want to put stuff out there that I’m not proud of, and I want to make sure what I’m posting has a focus. That said, I won’t fail in bringing you a monthly Hope Warrior because 1) I think it’s awesome, 2) I really like doing it and 3) MOST IMPORTANTLY, these are some incredibly awesome people that deserve to have their story read and shared. They inspire me every day.
Without further ado..please read Jennifer’s story. Share it. Take hope from it. She’s amazing.
What type of chronic illness/autoimmune disease (s) do you live with?
I live daily with Ulcerative Colitis, Hypothyroidism, severe Enteropathic Arthritis and Colonic Inertia.
When was your diagnosis? How did you cope?
I’ve experienced gastrointestinal problems since I can remember. I first got diagnosed at age 21 after going to the emergency room for abdominal pain & bloody diarrhea. They did a CT which suspected IBD. That was my first admission to the hospital & I later got a colonoscopy that confirmed a diagnosis of UC/IBD. I was terrified of my future & coped by trying to hide my struggle to stay healthy. That didn’t work at ALL. I bottled up my feelings until finally I broke down to a close friend at work. From that point on I’ve been open/honest about my health. Unfortunately not everyone you open up to will be willing to support you & I’ve lost a few friends along the way. But when I’m honest about my disease and limitations it can cause most people are wonderful at supporting and trying their best to understand this disease. Friends and family help me cope daily. Sometimes my health doesn’t allow me to work or even buy groceries- those true friends/family are always there in a heartbeat an help me cope. I’m very very blessed. My faith in Jesus is the biggest thing that allows me to cope, I wouldn’t make it through the trails & struggles that having a chronic condition brings without Him. He has been my rock since day one.
Three months after being diagnosed with ulcerative colitis all my joints started becoming painful & stiff. I was having a hard time walking or even moving. Working on my feet became nearly impossible! My gasterointerologist tried to treat me with high dose steroids but ultimately I needed a rheumatologist & after two months on medical leave and lots of bloodwork later I was diagnosed with severe Enteropathic Arthritis due to having IBD/UC. My autoimmune disease (UC) was attacking my joints causing them to swell and become stiff. My life I had built started to spiral downwards. I worked until my joints gave up. I drove until I couldn’t get into a car. I was in such a dark state of depression as I spent months in bed trying to find relief & treatment for my joint pain. This sucked. No question about it. I had to move out of my third story apartment & move back in with my parents because I couldn’t care for myself. My life I had built as a young professional was rapidly taken away from me. I even learned to inject chemotherapy that suppressed my immune system in attempt to find relief. Ultimately my body responded best to Humira.
Last summer I developed severe constipation. What some don’t know is Ulcerative Colitis can cause a daily struggle between constipation/diarrhea. But this wasn’t typical constipation, I knew something was wrong. I had such a struggle with it to the point I was taking GoLytely sometimes weekly just to get relief. (that giant jug old people drink before a colonoscopy to clean them out!) My GI ordered my second colon transit study & a week later I was diagnosed with Colonic Inertia. My colon no longer moved waste along- it became paralyzed. The risk of developing an obstruction in my digestive tract was very high, and the fear of my colon one day rupturing was a daily thought. I felt like I was a ticking time bomb. Knowing my history of UC/Enteropathic arthritis and now colonic inertia, my GI doctor strongly recommended surgery.
What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
•high dose steroids
•Humira injections weekly
Right now I’m taking synthroid, sulindac, protonix, twice daily immunomax multivitamin, vitamin D3, fish oil, pancreatic enzymes, amitriptyline, levsin and Humira weekly. I just saw a new rheumatologist who is trying to get me approved for a safer option than Humira, Enbrel injections.
I started physical therapy this past year. I see a physical therapist twice a week to combat my arthritis. It takes up time since I work full time, but I find it helps tremendously. And like most who are chronically ill- i’ll do anything to stay healthy.
In 2013 I had my gallbladder removed after a HIDA scan showed 6% function. I was home the same day & had much improvement.
After being diagnosed with colonic inertia in 2014 my GI doctor, colorectal surgeon & rheumatologist saw it was in my best interest to have my colon removed. On December 17 I arrived at St.Francis Hospital to undergo a laparoscopic total colectomy with ileoanal anastomoses. They would remove my diseased colon and connect my healthy small intestine to my rectum. On December 22 I became septic & I went into emergency surgery. I had developed a 106 fever for two days and my surgeon suspected something wasn’t right. My surgeon found a twist in my new intestines. I now sport a wicked 9 inch incision on my abdomen that I’m still learning to love. That was the sickest I’ve ever been. After 19 days in the hospital I was finally able to go home
That admission was definitely the hardest. I was terrified of losing my colon, but desperate to find health & relief of my symptoms. I was in the hospital over Christmas & New Years. Unfortunately I was so sick I hardly recall any of it even though my family & nurses did everything they could to ensure we still celebrated the holidays. My family decorated my hospital room with a tree, my husband even brought our stockings from home on christmas eve. We spent our first christmas as newlyweds in the hospital, but I remember family and friends filling my room throughout the day. I also remember getting my PICC line placed on christmas day, a central line going to my heart that allowed my body nutrition through my veins since my new digestive system wasn’t ready. My nurses I had while I was in the hospital became family to me & I love them for that! They helped encourage me daily, and they will never know the impact they made on my life. After I was healthy and recovered I had such a fun time going for a healthy visit back to that floor to thank them. Those ladies are angels in my eyes!
Ultimately, my colectomy ended up giving me my life back & I LOVE it.
Me & my husband right before surgery. If you can’t tell we like to keep things light-hearted 🙂
If you could tell yourself one thing looking back on your diagnosis, what would it be?
You will make it through. Your faith will be shaken & life will feel like it’s all falling apart but you will make it. Remember to stay strong & trust in God to shine a light on the path He is leading you on. Family & friends will become your lifeline.
Stay POSITIVE! If I let myself start getting down about my circumstances I will spiral into a depression. Be thankful for what this struggle is teaching you & how strong you are becoming. If I could do it all over again I wouldn’t change a thing! I’m thankful for having this struggle because it’s made me incredibly confident, strong, brave, fearless & has forced me to rely on God in ways I didn’t know possible. Prayer is a really powerful tool. I can’t stress that enough.
What do you do to relieve stress?
This may sound odd, but I work. I’m a pediatric RN on an inpatient floor & I’m incredibly lucky to have my dream job! When I am healthy enough to work those long 12 hour shifts I absolutely love it. I get lost in the care of my patients, their families & the battle they are on. Work is my escape & those tiny previous children show us all how to fight illness & overcome.
Do you have a saying or quote or song that you turn to when you need to be uplifted?
The months leading up to my colectomy were the hardest for me. I go to LifeChurch.tv in Oklahoma & they upload their worship sets to SoundCloud. Anytime I was worried, afraid, driving to appointments, getting a scan or even while I was in the hospital I would listen to a song called You Make Me Brave. I’d listen to it all the time on repeat because for me it perfectly depicted the battle I was facing. The chorus helped remind me that God is equipping me for this battle. That God has given me more than I could handle to allow me to lean on His strength. God made me brave during it all & I am in love with this song https://soundcloud.com/lifechurchtvworship/you-make-me-brave-lifechurchtv-owasso
What are some of your coping mechanisms when you’re flaring?
Really my husband wins credit here. When I’m too sick to care for myself he’s right there picking up the pieces with a huge smile on his face. He’s always been so positive & really helps me stay positive when I’m sick. He also prays over me daily and encourages me when I feel like giving up. He reminds me I’m not in this battle alone and that GOD is right beside me. I will never be able to thank him enough for all the love and compassion he’s shown me just in our first year of marriage. I posted the other day that true love is when your husband spends the night sleeping in a hard plastic chair next to your hospital bed so you don’t have to be alone even though he has to work in the morning… he did this for three straight weeks. He goes to work early to ensure he can make it to every doctors appointment, sometimes multiple times a week. To sum it up- my husband is a rockstar.
My other favorite go-to things during a flare are:
Comfy pajamas, a series to binge watch on Netflix, Lush bath bombs for sore joints, wicked good moccasins from LLBean, my iPad, boost nutrition shakes to prevent weight loss & of course support from my amazing spoonie friends on Instagram like you! This past year I started reaching out to other girls my age who are struggling with the same chronic conditions I am. It’s amazing the friendships and bonds I’ve made with ladies across the globe. Knowing you don’t fight alone is a powerful thing. I found these ladies on IG- and the bond we share is like no other. I recommend it to anyone with this disease, find people you connect with.
what are some of your favorite things?
Encouraging others living with a chronic condition to keep fighting & stay positive is honestly one of my favorite things. I recently started mailing cards & goodies out to people struggling with UC/Crohns with hopes to encourage them. I got tons of cards from friends, family, complete strangers & my spoonie friends on Instagram while I was sick in the hospital. Getting a cheerful card & hearing that someone prayed for me kept me going when I felt like giving up. Something as simple as a card gave me strength to keep fighting & I hope to do that for someone else!
Social media accounts /website?