I am an Ulcerative Colitis (UC) warrior. This is an autoimmune disease that attacks your colon/large intestine. This journey for me has changed my body, my mind, my relationships and I want to share it with you!
(PSA: UC is a gross disease that affects your GI tract, I won't go into nasty details (maybe) but if you can't handle stuff like that, move to a not-so-ew post :) !)
In 2015 I started to get really sick - lots of stomach stuff going on. I'll spare you the gruesome details, but after a couple months of this, my family physician sent me to a Gastroenterologist (GI doctor). The GI was pretty sure I had UC, but needed to do a colonoscopy to be sure. I had never heard of UC. It is very similar to Crohn's disease- which I had heard of. However, the main difference is that Crohn's can effect any part of the GI system, where UC targets only the colon. After my first colonoscopy in August (absolutely terrible, but they have easier, better prep now), it was confirmed - ulcerative colitis. I had a few ulcers in my colon causing bleeding, pain, swelling, etc. After my diagnosis, I found out my dad also has UC. It is not technically proven to be genetic, but is more likely to be. So now starts the medicine - there is no cure for UC (or basically any autoimmune disease for that matter), so doctors try to treat your symptoms and get you into remission (meaning no UC side effects or symptoms at all).
For the next 14 months I would try a dozen different pills to help my symptoms. None worked. It lasted so long because each medicine takes 2-4 months to start working (or proving that it doesn't work for me), and per my insurance company, and my doctor, we needed to try each kind before moving onto more serious treatments. My local GI doctor sent me up to an IBD (irritable bowel disease) doctor in St. Louis, a Washington University physician. My local GI was awesome, but he admitted he did everything he could for me and after he did a second colonoscopy a year later, he said the ulcers had multiplied and I needed someone more specific with my disease.
Onto Dr. G (my Wash U, StL physician) - she's awesome and is still my doc to this day. She put me on a few more pill meds before we started Humira. All of these medicines are immunosuppressant drugs - since UC is an autoimmune disease, my immune system attacks my body, therefore these medicines lower your immune system so it will stop attacking because it is too weak.
Humira lasted about 4 more months. Shots in my legs and belly every other week. My grandma taught Colby how to do these, but he hated it because they caused me pain. I've read lately that Humira now has a non-stinging liquid. That would have been nice, considering my Humira shots felt like fire being shot into my blood.
Next, after Humira failed me, onto an IV infusion medicine called Entyvio. I had to drive to South County in St. Louis to get these infusions done, but I didn't mind - big fancy massage chairs with nurses who gave you warm blankets while you sat there for an hour and half watching TV or reading while an IV was in your arm. Not too shabby. Guess what though? This medicine didn't work for me either. However - my dad started this in late 2017, and he is in remission!
So now comes another colonoscopy. My doctor needs to check to see if the ileum (the last section of my small intestine) is still okay, and that the ulcers didn't spread. I know earlier I said UC only affects the large intestine/colon BUT if it's real bad, it can spread to your small intestine.
Colby and I were so sick of dealing with my treatments, side effects, symptoms- tiredness, sickness, swollen, bloated, pain, sadness; that we were praying the ileum was okay so I could have surgery. I wanted to have surgery so bad. I knew it would fix this hell I lived in for almost two years. Waiting and hoping and praying these medicines would work. And then they didn't. And then hope the next one would. And it didn't. I was so exhausted. My body hurt all the time. We couldn't go anywhere or travel, or go out with friends. We were miserable. We prayed for surgery. Hard.
Then our prayer was answered. My doctor called me the day after my colonoscopy, asked me to come back within the week. We did. We scheduled surgery for the very next week. It was that bad guys.
Surgery involved two parts:
Part 1 - remove the colon, make a pouch with my small intestine, get an ostomy bag while this heals
Part 2 - remove the ostomy bag after everything heals
Simple as that.....
Guess what? Nothing is simple for me :) It turns into 4 surgeries. Between July 2017-December 2017.
July 25th. Surgery 1. I wake up with an ostomy bag. We learn how to change it, take care of it, etc. and were in the hospital for 5 days. I had my the huge hole with my ileostomy sticking out, a C-section incision glued up, where they pulled my colon out of, and an incision in and below my belly button where they stuck in the lights and stuff.
We get home, and my ileostomy (the part of my small intestine that sticks out in the ostomy bag) started ripping away from the rest of my skin. This was (probably) due to how weak and diseased my skin and intestines were, per my ostomy nurse.
10 weeks of battling a rough ostomy bag, and October 4th comes around - ostomy reversal day. Also called an ileostomy takedown. This surgery would remove my ostomy bag, stuff the small intestine back inside, and move on. That's it. I came out of my surgery with a gaping hole where the ostomy was. They let this heal from the inside out - no glue, no stitches. Talk about crazy! Tons of pictures of it, I debate putting them on here because it might gross people out. I felt awesome. I was on cloud 9 - my symptoms were gone, my poop bag was gone - I was thrilled. We went home after 3 days.
Remember I said nothing is easy for me?? Within 24 hours I developed a fever I couldn't shake. Colby was on the phone with the doctors every hour. Finally they said to bring me back to St. Louis. My fever kept climbing. My doctors ran all the tests as to why I was developing sepsis. CT, X-rays, ultra sound, blood work -- no answer. After hours and hours of this and still a fever, and now pain - they decided on an emergency exploratory surgery at 2 a.m. They needed to find out if my J-pouch (the part of my small intestine that they turned into a "fake colon") was dying, being rejected by my body, or if some stitches were leaking inside from the first surgery that got aggravated during surgery #2. I got put under for surgery #3 less than 7 days after surgery #2. I went to sleep knowing that if my pouch was dying, I would wake up with a permanent ostomy bag. But the surgery found nothing. Everything was okay on the inside - good and bad news! I had the c-section incision opened back up, my belly button opened again, and this time had stitches instead of glue holding them back together. Needless to say, my belly button has had plastic surgery - it looks totally different than it used to.
My fever got worse. Up to 105. I was put in the ICU for almost two days. I had antibiotics fighting off the infection. I couldn't move. Literally couldn't move. My body hurt so bad. I had tubes everywhere. I couldn't eat or drink. I was miserable and tried to sleep the whole time. Finally the fever broke, finally my digestive system started moving again and we got to go home.
Everything was great! I felt awesome. Colby and I were getting back to normal life. Learning what foods I could finally eat again - he heard me complain about wanting a salad for months. MONTHS. He gave me so much grief for this! And now I could finally eat them again. We were both thrilled :)
Fast forward 2.5 months. Day before Christmas Eve. I'm outside sweeping our patio (mind you, I've been cleared for a month and a half to do exercise again). And a pain starts to show up in my side. Slowly getting worse. Then quickly getting worse. I crawled, yes crawled, up the stairs into our house, trying to find my phone to call Colby. I called him yelling and crying that something was so very wrong. He rushed home from work, carried me to the car and I screamed in pain all the way to the ER. All day went by. Finally they (local ER) sent my x-ray and ultra sound to my doctors in St. Louis - I had an abscess (swollen pocket of infection) on one of the surgical sites on my inside. Waited for even more hours -- still in tons of pain, for the ambulance. They shipped me back up to my surgeon in St. Louis in the middle of the night.
Because it was Christmas Eve now, they were only doing 'emergencies' on the holidays. So I stayed in pain and on antibiotics until December 26th when they finally did surgery #4, inserting a drain into the abscess, that flowed out into a bag. This was stitched to my side. We finally went home a couple days later. And we went back two weeks later to have the drain removed.
I know this was a long story - over two years of medicine, surgery, complications. And sometimes I hate to tell this to people who have UC, because it's scary. But the whole time I told myself - a little bit of pain for a lifetime of no symptoms. I had my entire family, all of my friends, and the best nurse I could ever ask for - Colby. After he died, in May of 2018, right after we finished all of my surgeries and getting better, I wondered 'why did we have to spend our last year miserable like this?' Let me tell you something - our relationship, our marriage, our unconditional love grew like you wouldn't believe. I'm the one who is the caregiver, I'm the one who did everything for him. As my mom said - "I knew he loved you, but after this, he loved you so much more." This disease, these surgeries, they were a gift for us in disguise. If you don't think God knows what he's doing - you're just flat out wrong. Once we got home from surgery #4, Christmas in the hospital, we had our families over for Christmas - both of our families, all sides. That never would have happened had I not been sick. Our last Christmas together would have been the normal rushing everywhere, traveling for hours, getting to all the parents, grandparents, aunts and uncles that live miles apart. But no, we got a (somewhat) peaceful Christmas in the hospital together.
A wise, wonderful woman I go to church with, that I am blessed to call my friend, she once said 'It's not about why this is happening to you, it is for whom it happening for.' Friends - this journey wasn't just about me or mine & Colby's relationship. This was a chance for me to show people that no matter what happens to you, no matter if it doesn't turn out how it was supposed to (2 surgeries to 4, after 2 years of medicines that never worked) - you have to have Faith, and Hope. God had his plan. He had his plan back before 2015 when I got sick. He had his plan on how Colby and I would grow. How I could show people to keep their heads up. I didn't get depressed, don't get me wrong- I got sad sometimes, but I knew God had this handled. I knew I could do it with His help. Since I was diagnosed, we prayed for healing, my whole church, my family, our friends, Colby and I every night, and God chose not to heal it. He decided we needed this journey for our growth, for other people's growth, reassurance, faith, I'm not sure what else others needed from my experience, but God does.
xoxo,
Christine
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