Something I have felt compelled to share with y’all is my journey with Ulcerative Colitis (UC). I mentioned it briefly in my About Page but have recently begun having more issues. Given that I’m sharing my life with you all, I felt it best to be fully transparent about what I’m going through. Being that today is World IBD (Inflammatory Bowel Disease) Day, it only felt appropriate for today to be the day that I share with you my story. I will start by saying that this post will be very transparent so if this isn’t your thing, feel free to stop reading right here. I know this topic isn’t for everyone. But, it’s my blog and I can do what I want. 🙂
Having digestive issues is not exactly an easy thing to discuss let alone opening up about it to all of my invisible internet friends. However, I have enjoyed reading other blogger’s stories about their journey with UC and it’s nice to be able to relate to someone even if it’s only through a computer screen. If sharing my story helps just one person feel more comfortable with their journey, then this post was a success.
When I was 14, we took a family trip to Chincoteague Island for New Years. While we were there, I noticed I was bleeding when I went to the bathroom. For whatever reason, I remember thinking, “Hmmm, maybe it’s something in the water.” Ha! Oh how I wish that was all it was. I didn’t say anything to my Mom (because, teenagers) about it just kept it to myself figuring it would resolve itself once we got home.
Well, as I’m sure you can guess, things didn’t improve once I got home but, instead, got much worse. I was continuing to bleed every time I went to the bathroom, experiencing severe urgency, stomach cramps and gas/bloating. As a 14 year old girl, this was disgusting and not something I was super fond of having to talk about (hello teen years!) but, finally, I told my Mom what I was experiencing.
We made an appointment with my Pediatrician to see if we could figure out what was going on. She determined that it was something gastrointestinal related and referred me to a Pediatric Gastroenterologist, Ted Williams. After meeting with him and having an office consult, he determined that my symptoms sounded like Ulcerative Colitis but that to be sure, we needed to do a colonoscopy.
(Side note: Highly recommend Dr. Williams! He was fantastic and made a very awkward, and unfortunate diagnosis much better. So much so, I kept going to him until I was 19 and they made me switch to an adult doctor.)
Can we please talk about having to have a colonoscopy at age 14? Especially as a girl? I was mortified. People of all ages complain about the prep for a colonoscopy but you try telling a 14 year old they can’t go out with their friends because they need to stay home and eat their liquid diet and prep for their procedure. Yeah, my “prep” didn’t go so well. I did the liquid diet as instructed but drinking that gross solution? Yeeeeeah I wasn’t all about that life. And it showed in my results for my colonoscopy. Dr. Williams went to tell my Mom how everything went afterwards and asked her if I completed all of my prep because, to put it bluntly, there was still a lot of poop in there. Whoops. My Mom still gives me crap about that even 15 years later. I guess there are somethings you’ll never live down!
Anyways, he was able to see enough to know that I did in fact have Ulcerative Colitis. Not exactly the results we were hoping for but, at least we had an answer. I was put on Asacol and a few other topical drugs to help get things under control.
I was very fortunate that I was able to stay on such a “low dose” drug to get my symptoms in check. However, having to take so much medicine in the midst of your sleepover/live at your friends houses days is awkward. I had to leave medicine at friend’s houses so I always had some if I spent the night. Yeah, explaining to your friends that you have to take these gigantic pills so you don’t bleed out of your butt when you’re 14? Suuuuper fun.
Fast Forward to Adulthood
Thankfully, Asacol kept me in remission for quite sometime. I’d have the occasional flare up here and there but for the most part, I was pretty good for years. I was having my usual check ups with my adult GI doctor and colonoscopies as needed.
But in 2014, things took a turn. I was traveling for work quite a bit while planning my wedding. Stress is one of the worst things for IBD so, naturally, I started having severe symptoms that I had never experienced in my 12 years of having the disease. Quite honestly, every time I went to the doctor and they asked me if I had experienced any weight loss I chuckled and said, “I wish!”. Well, while weight loss wasn’t a terrible side effect while you’re trying to fit into your wedding gown, the nausea, ulcers in my mouth, urgency, bloody diarreah, and stomach pain were almost unbearable…especially while traveling. The nausea was so bad that I actually had a pregnancy test done at Patient First while I was there for something else thinking I must be pregnant. The doctor looked at my like I had 4 heads and explained to me that I was just having a severe UC flare. I felt like an idiot but clearly things were getting bad.
I went to see my doctor, Michael Farrell, to see what we could do to get things under control before my big day. Since I had been taking the same drug for so long, he immediately started talking to me about biologic drugs. He gave me a bunch of information on Humira and said they were going to work on getting it approved with my insurance since it was an expensive, specialty drug. I’m sure 90% of people have seen a commercial for Humira and the laundry list of side effects they list (including cancer).
After the appointment, I vividly remember getting in the car and calling Tyler while having an anxiety attack over the thought of having to go on Humira. He assured me it would be fine and went about his day. I then called my Mom and bawled my eyeballs out while driving back to work. (Anyone else always lose it when they talk to their Mom when they’re upset?)
Once my insurance approved my prescription for Humira, I decided to start the loading doses about 2 weeks before my wedding. I can’t imagine anything worse than being in the middle of a flare, in a beautiful white dress, and needing to go to the bathroom (with help no less!) in the middle of our first dance or something. So, we went forward with it knowing I would then have to give myself an injection (read: Tyler would give me an injection) on our honeymoon. Anything in the name of some relief!
Fortunately, I responded very quickly and got some relief and we had a wonderful, symptom free, wedding and honeymoon.
Humira worked great for a few months but then I started experiencing some weird side effects. Oddly enough, while Humira can treat psoriasis, it can also give you new or worsening psoriasis. Well, I was one of the lucky few who got a few psoriasis patches as well as pustular psoriasis. Word to the wise, don’t google that – the pictures are horrific and fortunately mine was not that bad. Humira is also an immunosuppressant so I was getting sick more frequently and just generally didn’t feel well. Other than the fact my UC was in check.
I made an appointment with my doctor to discuss my new symptoms and see what we could do about it. At this point, we were also planning to start trying to start a family in a few months and I wanted to discuss being on the drug and getting pregnant. Much to my dismay, my doctor didn’t seem worried at all about my symptoms as long as my UC was in remission. He also assured me that it would be fine to take while being pregnant but I still was just over it.
So what did I do? I stopped taking my Humira after that appointment. Cold turkey. Not sure if that’s advisable or not but I hated being on it and wanted to be done with it. And luckily, I didn’t have any major issues.
That was in April 2015 and in January 2016 we found out we were expecting Liam. I experienced 9 glorious months of remission while pregnant, as do many woman with an autoimmune condition, followed by another 4ish months while nursing. Seriously, it was wonderful to be totally symptom free, only taking Ascaol for 16 or so months.
Once I stopped nursing, my body figured out something had changed and decided to go haywire. I was expecting this and was actually pleased it didn’t happen right after giving birth and made an appointment with my doctor at the first sign of a flare. At this point, I knew we were still in the midst of growing our family (not tomorrow, but eventually) and I had such a horrible experience with Humira, I knew I didn’t want to go back on another biologic drug.
I hadn’t seen my doctor since my last appointment in April of 2015 so it had been almost 2 years since I last saw him. As I expected, he almost immediately started mentioning different biologics. I told he and the nurse practitioner I wanted to try the step up approach versus the top down approach and start out with steroids and some topical drugs first to see if things got back under control without breaking out the big guns. While he was slightly resistant, we moved forward with my plan. Prednisone is a wonderful drug in that helps my symptoms almost immediately but it also has side effects of its own. And now that I’ve come off it again, I’m starting to see symptoms again.
My Mom has always told me that you are your best health advocate so I have decided to try to resolve some of my symptoms with dietary changes. I have added collagen into my diet, am trying to cut out gluten (it’s seriously everywhere!), and reducing foods I know irritate my stomach when I’m in a flare. Additionally, until we’re done having babies, I just don’t feel comfortable being on a biologic drug. So I won’t take one unless my health is in serious jeopardy. The side effects of biologics are way too risky and, with a lot of them, you can’t take them in your third trimester and aren’t able to breastfeed. Both of which are deal breakers for me. So, my health is in my hands. I know other people have seen improvement in their symptoms by making dietary changes so that is what I shall try for now.
To sum it all up, UC sucks. IBD sucks. And I hope we find a cure for it sooner rather than later so no one else has to experience this. I don’t want to be #IBDvisible and no one else should be either.
*If you made it all the way through this post, you deserve a medal!*