So it’s been awhile since I’ve last updated you all or even have written on this blog. Obviously for good reason, I swear. Last I wrote was just before my appointment on August 14th and after that point I just didn’t know how to update you guys- everything was so up in the air. But now we have answers so lets start back from that appointment.
On the 14th I knew going in that something was wrong, it was just a matter of what. I was given some possibilities of what was going on, so I mentally prepared myself as well as I could. When I got there however, I was completely blind sided. According to my lab work, I was okay. I was at therapeutic levels of Humira, all my baseline health levels were great, and I had a mild inflammation maker come up, but it wasn’t near what it was when I was first diagnosed back in January. But I refused to accept this, I was feeling more sick.
I am so grateful to have a doctor who was more concerned with my symptoms than what my test results showed. We spent time going over what was happening and the further we dived into things, the more concerned he looked. According to him, I wasn’t following typical patterns of the disease so of course he was confused. I should be better. So we toyed around with different possibilities, one of them including that I might actually have Crohns, not U.C. I was choked. I didn’t prepare mentally to have a different disease. And I don’t even think it was fully the disease itself that scared me (although it did partially) I think it was that we were almost at the year mark where I first started feeling sick and now we were potentially back to square one.
Obviously I took the rest of the day off at work because I went to my appointment during my lunch break. My head felt like it was swimming trying to wrap itself around everything. I was now faced with new possibilities that we hadn’t considered before:
- It’s Crohns. Good and bad. Good in that it opened treatment options for me but bad in that if this is what it was, he was concerned it was aggressive.
- It’s Ulcerative colitis and Humira is just not working at all. According to him the receptors Humira is binding to are probably not the ones that are causing me to be sick, so this eliminates quite a few treatment options for me including Remicade. There is the option of Entyvio, but I would need to go back on steroids because alone it takes 6 months before you are considered at therapeutic levels and that’s too long of a wait at the rate I’m going.
At this point I wasn’t sure what option was better. But one thing we knew was my lab results were unreliable in telling us what was really going on so now we needed to book an urgent colonoscopy/gastroscopy. Luckily I was able to get in on the 29th of August, which sadly was right in the middle of our Mexico trip, so that was quickly cancelled. Not that I’m that upset about it. It meant we were that much closer to understanding what was happening with my body. Before I left he prescribed me a bile acid sequestrate (Olestyr) to see if this could potentially help me with the amounts of times I was going. His theory was that my small intestines were releasing so much bile that my large colon essentially became one large slip and slide. It’s a surprise to us that my baseline levels were good because if this were the case my body would suck at absorbing any nutrients.
So we gave it a try and the first day it did work. I went to the washroom significantly less. But that quickly changed. I got more sick (which at this point I didn’t think was possible). Alarms were going off that whole week before the colonoscopy that I was really sick. Blood was coming out of me at an alarming rate, nausea stuck with me all day killing my appetite and resulting in me weighing a whooping 87.5 pounds (my parents were delicately trying to tell me for weeks that I was getting too skinny, but they saw my struggles every day to hold anything down). And the urgency seemed to have sky rocketed. When I called his office they immediately asked me to come in. This was all beginning to feel like it was torpedoing and just getting out of control. I immediately had to stop Olestyr and hold up as well as I could for my colonoscopy, but to prepare for something.
Fast forward to the 28th were I had to do that retched colonoscopy prep. Now I remember back in January how terrible the prep is. The constant running to the washroom and the nasty liquid you need to drink. But this time was different. It was a whole new level of a nightmare. To begin with I was already having diarrhea so immediately after the tablets I had to take and the first litre of the peglyte solution I had to drink, my body revolted. I was so nauseous and in so much physical pain. It felt like my colon was on fire with ulcer pains. And my poor butt was so sore from all the wiping, not even my aloe baby wipes could sooth that pain. And the blood! It looked like I was giving birth to the antichrist at this point.
Then came the second litre. Just the thought of it was enough to make me want to hurl. I called the health line to see if there was anyway I could get away with not drinking the entire solution since what was coming out of my ass was the same consistency and colour as my piss. They said I should be okay but to try as much as I could. I could only get through another half a litre before I almost upchucked everything on my kitchen table. I couldn’t remember it being this hard last time. And this painful. I went to bed (sort of, because I spent most of the night still running to the washroom) hoping I had drank enough and they could still perform the test. Nothing worse than enduring all that pain for nothing and potentially having to do it again! But for anyone who has to do a prep while they are in a bad flare up like I was, I highly recommend not working or even leaving your house. I had a 30 second window most times to make it to the washroom because it is next to impossible trying to hold in something that comes out of you as liquidy as it was…..
So here we were the next day at the scopes. They went fine as I was knocked out, but let me tell you, when I woke up that was a whole new story. I remember being jolted awake by this incredibly painful sensation to go to the washroom. I needed to go now. Of course I was still groggy and not functioning so I had a nurse yelling at me to lay back down and that I was just passing gas, nothing would come out. I begged her to help me to the washroom because this wasn’t my first colonoscopy and this pain felt different. My face must have looked horrid because a nurse finally rushed over helping me move my IV and half carry me because I stumbled like a drunk person. Just seconds before we get to the washroom door my bowels of course let it all go. Again, what looked like the birth of the antichrist was now spread all over my leg, my gown, and the poor hospital floor. No poop! Just bright red blood everywhere. I could hear my poor nurse mutter holy shit and look at me with such worry and pity as she continued to help me into the washroom. I apologized maybe like 6 times as I stared in horror at my leg and the floor, while she looked at me in disbelief and apologized for not believing in me right away.
Something was wrong. My gut was telling me to prepare for something.
Once I was settled back into my bed the nurse then explained that today I would have to do an IV of steroids before I left and later tonight I would have to return to the IV clinic to do another round. I was confused. Why? I didn’t have to do that last time I was here. The nurse looked at my file and was only able to tell me that it had spread but my doctor would be out right away to explain more.
Okay. Spread in my colon or past that? And how much of it? It sounded like quite a bit according to my nurse but she couldn’t confirm. So I sat in my chair waiting while steroids were being pumped into my system.
Finally he came out. He looked rather sheepish and defeated, so my heart sunk. This couldn’t be good. He gently sat beside me. He explained that they could find no evidence that it was Crohns so it was for sure Ulcerative Colitis. I thought this was great news, but he quickly deflated that theory explaining that it’s not necessarily about the disease, it’s about the person. He’s had Crohn’s patients who have had it easier than me and I was heading to a very uphill battle. It had spread. A lot.
When I was first diagnosed I was told I was mild to moderate with it impacting just over 1/4 of my colon. Now I was considered severe and it had spread through my entire colon. I made him confirm that it wasn’t just the majority. Nope, it was my entire large colon up in flames. He didn’t know why and couldn’t understand how it happened so fast and he told me that that part honestly worried him. Essentially my colon right now is like a wild fire, rapidly spreading and becoming worse. What’s to say it won’t spread further than my colon at the point? Or that I won’t develop toxic megacolon or something worse? It needed to be dealt with now. So our game plan was to pump steroids in that day through IV to give my body a jumpstart and then immediately the next day start on Prednisone again for 3 months. The hope is to tame the inflammation and combat the spreading and hopefully when I am stable enough to start Entyvio. But we couldn’t even consider that treatment option at this point because right now its too far away of an option.
So here we are today. On day two of prednisone. Back to 8 pills a day and hoping we are back on the road to recovery. I am already feeling better than I have been the past 6 weeks. I no longer have nausea unless its a really bad bowel movement, no more blood, and just overall feeling stronger (mentally more than physically) by the day. I’m still a far way from anything though. Still going 20+ times a day and physically I’m pretty weak. Luckily I took this week off work despite not being in Mexico because I figured my body and I could use a break.
I’m grateful I have an answer. I have a start again even if we are back to square one and a much worse square one. I am grateful I used my voice and fought for my body. I knew something was wrong and harassed my doctor a bit. He was generous enough to let me come see him twice before my colonoscopy and assured me that we would figure this out. I am grateful that I have someone in my corner who looks at the entire picture, not just the medical picture. I couldn’t imagine how different this could have gone had my doctor told me that I was fine according to my test results so just to continue with my treatment and give it more time. My inflammation markers were literally mild! But my colon was lighting up like a christmas tree with the disease. I was far worse but it never picked up on that. I know I’m going to be a challenge for my poor doctor, but now I know. I know to continue to fight for myself because this disease is unpredictable and little is known about it and even what we do know could be wrong! Trust my gut.
I will update you guys on my honest opinion on Humira in another post sometime soon. Even though it didn’t work for me, it was not nearly as scary as I thought it would be and I am a bit sad it didn’t work out because it was by far the one treatment option I was on that had the least amount of side effects and I was able to do it myself on my own schedule and time.
But there you have it folks! Here’s to a whole new battle and holding on to some possibility that I will get better. Prednisone may not be my first option, but so far it’s been the only thing that has brought me anywhere near remission so I will take what I can get at this point.