Prep time! :D

Today’s the day… the day of the dreaded prep. I’m going in for my yearly colonoscopy tomorrow to check and see if my medication is working. It’s always this time of year it seems to come: summertime and the weathers nice. But hey it’s just another day in the life. I’ve been feeling okay lately. Just okay. I’ve been a little more tired than usual, which isn’t necessarily a bad thing because with the steroids I was staying up night after night, the insomnia was REAL. Also, my appetite hasn’t been there but I’m not entirely upset about that either since I packed on the pounds during my last 9 month stretch on and off of the roids (Prednisone and Uceris). A lower appetite also means this prep won’t be as miserable as usual. I have pain here and there, very localized though, I can almost put a pin on it. It’s my usual pain, like a knife in the stomach kind. You have to catch your breathe a little bit from it. But, it’s definitely less frequent than normal *thumbs up!* 😀

So after my recent off of Uceris, as you know, I’ve had good days and bad. I seem to be having a lot of IBS symptoms unrelated to Crohn’s. I’ve had to use several courses of antibiotics to treat these over the last 6 months or so. When my taper from steroids starts I almost prepare myself for the days on days of fatigue, countless and very urgent bathroom trips a day, and unbearable stomach pain. But knock on wood, this time like I said I am doing okay! I’ve been completely off Uceris for about a week and a half now, which doesn’t seem very long but it is. It’s nice to see my body coming back and my face going back to its normal size ha! No more moon face woohoo! Just crossing my fingers my insides show some good news as well.

I’m anxious for tomorrow to be over with, I usually go under full anesthesia for the colonoscopy and this time I’m not. My doctor only performs them under partial sedation and the last time I had partial… it was a nightmare. Probably one of the most painful things I’ve endured besides kidney stones. I was sick on the couch for a week afterwards. I’m hoping I’m more healed on the inside so the recovery will be easier. After this procedure we’ll see if this run on Humira (my third time in about five years) is working. I went from an injection every two weeks to once a week a few months ago and it seems to be helping more. This is frustrating though because no matter how I feel if I still have inflammation or signs of active disease then I have to visit other options. I think this just stems from the everyday struggles of living with a chronic illness. We don’t know what completely “normal” or “healthy” ever really feels like, and the reality of it is most of us won’t ever know. But, my doctor tells me I have two more options we can talk about. Thankfully the world of medicine is ever expanding and if those don’t work I will most likely qualify for some sort of trial, or some other treatment will hit the market. That’s the thought, or hope.

Tomorrow I will be participating in research by donating samples of blood, hair, nails, and tissue to help Crohn’s research. Even if it won’t directly benefit me, it might save someone else’s life in the future. So please keep helping me raise awareness and money! Some of us desperately need it! And to those doctors and medical workers who are constantly pushing for new treatments, my family and friends who are a constant support, and all of the people who share social media posts and donate money, I owe you all my whole life. I wouldn’t be here without all of you.

 

-xoMichelle

Talk About A Pain In the Ass

Pun completely intended in that title. But, me being a Crohn’s patient you’re probably thinking something different than what I’m really talking about (lol). I mean I guess I should have said a pain right above my butt but you get the jist of it. In previous posts I have talked about a herniated disk in the lowest part of my back. I’ve had a cortisone shot before and it wasn’t the most pleasant experience. Although, it was probably the coolest thing I’ve seen in a while. I mean the whole process of it.

I get called into the office, and of course as always, ma dukes is right by my side 🙂 I walked into what looked like an x-ray room with a big white table in the middle of the room and an x-ray machine with a monitor to the side of it. The nurse was very nice and quite comical when she asked me to lay on the table and then just completely whipped my pants off my butt. Yes, without even asking. Why do I always have such interesting experiences at the doctors, I don’t know. But anyways laying on the table, bare ass out the doctor came in. At first I was kind of confused as to why she whipped my yoga pants down considering I was getting a cortisone shot in my back… lol. But, it was the lowest part of my back and then soon realized they have to do the injection lower than the actual herniated disk. Thankfully, he wasn’t going right into my spine but rather in between the very top part of my butt crack, OUCH! Well, here we go. I’m face down on the table and he brings out the needle. Having being poked and protted so many times I have this weird thing about having to watch the needles go in whether its a shot, blood work, or an IV. I know, I’m weird. But being face down I couldn’t even see the needle which was my first problem. But, I just looked forward and saw my mom’s face and let’s just say that told me it all, which was my second problem. The doctor first gave me an injection of Novocain and boy did that kill. He waited a little while and gave me a second shot of it. Then set up the x-ray machine right next to my back. I felt pressure as I thought he was taking the Novocain needle out… Well, he was walking around the room and I was still feeling pressure. The conversation went like this…

Me: “Uhm, I still feel pressure, why.. is the needle still in me?”

Then, my mom with widened eyes and a shocked nervous smile just looked at me.

Doctor (with his thick Russian accent and as calm as can be): “Yeah, don’t move. It’s still in there.”

Me: “Mom, seriously is it? Can you see it?”

Mom: “Yeahhhh it’s still in there alright!”

Well I look over and there is a picture hanging on the wall in which I can see the reflection of the HUGE needle just sticking out of my back. Something you’d see in a horror film.

Sorry I’ve been blabbering on, the cool part is just about to happen. The doctor screws on the syringe with cortisone in it and starts to push it in. I feel pressure but that’s about it. Then look onto the monitor screen and see the cortisone flowing up through my spine. It was the coolest thing I’ve ever seen. Even cooler than flipping upside down after drinking barium and watching it flow through your digestive track Crohnies (ha!). If you’ve ever had an upper GI you’ll know what I’m talking about.

Well, the cortisone got me to about 40% after doing pretty much no physical activity besides several visits to PT. This wasn’t exactly what I had expected but my doctor did warn me it might not work that well. I then, as you all know, had a Crohn’s flare. And for me what that means is more steroids… A few weeks after my cortisone shot I had consulted with my doctor again to get another one, which would have been my last one I could have within the year. But because of my flare I had an intense course of IV prednisone and to my surprise my doctor told me this should help my back long term even better than another cortisone shot. So, I cancelled my appointment. As my treatment went on with the IV steroids I saw a huge improvement in my back. I was even back to the gym! I know I’ve mentioned this before but I wanted to share the whole story and what perfect time other than when it’s acting up again! (sarcasm) I went to the gym earlier today and apparently worked out too hard because the back pain started up again. It started up so bad I had to take a half of a pain pill. I am thinking about scheduling an appointment for another cortisone shot but that also means time off from work and the gym. We’ll see how I feel the next week or so before I jump at that.

Also, an update on how I’m feeling. I was getting sick of this moon face from the prednisone so I figured I’d be a little bit of a rebel and weaned myself a little further than I was supposed to down on the prednisone. Of course symptoms started coming back and I had to go back up to 20mg. They’ve stopped now that I’ve stuck to the doctors orders though. Lately I have been so exhausted. This feeling is all too familiar to us Crohnies. I haven’t felt it in a while though and maybe was taking too much advantage of it or I don’t know. But I’m going back to sleeping almost 16 hours a day and having a hard time functioning normally through the day. I have to push my way through it and chose my battles wisely. If I want to go to the gym at some point during the day I have to take an extra nap at some point too. Days I work, I haven’t been able to go to the gym. I have an appointment with my GI doctor in Boston tomorrow though so I’ll talk more about it with him but I don’t think there will be a solution unfortunately. Just going to stick to my green tea and extra sleep for now. Speaking of sleep, I have to get up at a decent time tomorrow so I’m going to call it a night while this pain pill is still working and not being a pain in the ass!

Sweet dreams my fellow followers and Crohnies!

xo Michelle.