You may or may not remember, but I’ve been on Humira for ulcerative colitis since May. In October, they doubled my dose after a colonoscopy showed still severely active inflammation. Even after the doubled dose, however, I still have inflammation and symptoms, so after some back and forth with insurance (of course, right?), I got approved for Entyvio and yesterday was my first loading dose. Hurray!
It was pretty straightforward and weirdly relaxing. The nurse took me took me to the infusion office and set me up in a nice chair and explained the process. The infusion would start slowly to see how my body reacted to it, then she would increase it as we went. She hooked me up and I pulled out my book and read for the next hour and a half while she periodically checked my blood pressure and increased the Entyvio.
At the end of the 90 minutes, she unhooked me and I was good to go.
I felt so much better today then I did on Humira days when I’d feel exhausted and just all around bummy. Of course, that could also have been the beautiful weather today, but we’ll see. My next infusion is in two weeks.
Which brings me to my next topic. I WENT ON A DUSK RUN TODAY!
Evening-sunset-dusk runs are my favorite and the winter keeps me from them. But since daylight savings time is back, I have time to go outside after Dave gets home from work. This week was chaotic with my baby boy in the ER on Monday night (he’s okay now) and yesterday just being a general nightmare, but today made up for it all.
I ran an 8:11 mile and kept a sub-9 average pace which felt waaaay easier than the same run on a treadmill so I will take that win!
When is your favorite time to run? Do you love daylight savings time as much as I do?
P.S. Happy Birthday to my big sister!! Love ya!
So this past week has not gone exactly as planned, but it still went really well!
For a workout last weekend, we spent the entirety of Saturday doing yardwork. I mean that counts, right? We planted literally 100+ flowers. Sunday was Mother’s Day and my darling husband made adorable peanut butter and jelly labels of our kids. Maybe I’ll post them sometime, but they are downstairs andd I’m currently holed up in our bedroom because if my son sees me, it’s all over. #mamasboy
Anyway, it was the cutest gift EVER.
Also, since my iPhone 5s was on its way to cell phone Heaven, my hubby took me to the Apple Store to buy an iPhone X. I feel so spoiled!! The difference in picture quality between the 5s and X is ridiculous.
Let’s see. Monday I went for a 4.5 mile run around 9:20 pace then did 80 Day Obsession Total Body Core.
Tuesday I did 3.1 miles at around 8:25 pace. 80DO got cancelled because my son was having a rough time teething and I wouldn’t have started working out until 10pm. No thanks.
Wednesday, I convinced my husband to run with me and we took the double jogger on a trail run for 4 easy miles. I pushed the first two miles, he pushed the second two. Then we let our daughter get out and run because she soooo wanted to. A-Dor-A-Ble. Again, no 80DO because kids.
Thursday was a rest day.
This morning, I took the kiddos on a double jogger run for 3.2 miles then we played at the playground for a while. It was super fun. I doubt I will lift tonight because I have a 10-miler scheduled for tomorrow.
Wednesday, after two weeks of back and forth with the Humira people, I finally had a nurse call me to schedule injection training. The only day she had available before next Wednesday was yesterday morning, so fortunately Dave was able to come home and watch the kids while the nurse trained me on Humira injections. I was on Humira 3 years ago, but stopped for my third trimester with my daughter and wanted a refresher course. The loading dose is 4 pens and they still hurt like a B.
Anyway, one of the side effects is that it can make you tired. Now, I don’t know if it did or not because I’m already perma-tired (thanks, kids), but I decided to chalk Thursday up as a rest day. Honestly, I think the emotional stress was worse than anything. I hate the idea of biologics with all the potential side effects, but since my ulcerative colitis wasn’t getting under control with other medicines, it was time to step it up. Here’s hoping it all turns out well.
That’s all I’ve got for today. I’ve got to go work on a post for Pittsburgh Moms Blog now while sipping on cold brew and listening to the delighted squeals of my babies playing with their daddy. 🙂 Make sure to check out my latest on PMB next Wednesday!
How was your week?
P.S. If anyone can school me in why my iPhone X only downloads some images if I copy a folder, but all the images if I Ctrl+A copy the pictures within the folder, that’d be great. Oh and why there’s like three different files of the same photo? I’m so confused. lol Going to be a work in progress…
My 2018 got off to a rocky start. On New Year’s Day, we made the trek home from Christmas vacation visiting family that took longer than it should have due to traffic and accidents. When we got home, we were out of food, the grocery store was closed, and Target was out of sauerkraut. So I had to improvise and made an Asian-inspired PA Dutch “pork and sauerkraut” of sorts: freezer orange chicken with pork egg rolls.
It was also the first day of marathon training… but that got moved to the next day. Which worked out well enough, because Wednesday’s run was cancelled due to fasting in preparation for Thursday’s UC procedure (nothing like starting the year with a clean colon! hahaha)
So today is my soft reset. It’s not going to be perfect- I’ve already made mistakes- but I look forward to the opportunity to improve, to better myself, to stop making excuses and getting in my own way.
That’s the great thing about changing and becoming who we want to be; we can start whenever we want. A week from now, a month from now, or even just RIGHT now. If we want to improve, we can. And I do.
The last few months for me have been plagued by postpartum anxiety and I won’t even pretend that it is all behind me now. It’s still very present and on the forefront of my mind. Even the idea of change and a better year makes me anxious. But as someone once said, on the other side of fear lies freedom, right?
That’s all for today, but stay tuned for more details on my marathon training and my new year’s resolutions!
What are your goals for this year? Do you plan to make this your year? YOU SHOULD!
I wrote an entire post and then deleted it. #EpicFail
Saturday it was still cold, but warm enough and with nice enough weather that I got to run outside. WOO!!! I did 13+ miles at a 9:51 pace. My goal was to keep a 10:00-10:20 pace, according to my training schedule, but the pace I kept felt really great. I didn’t get tired until mile 11.5, but I finished strong so I’m happy.
Starting the run:
I ran mainly on the roads, which were pretty clear except for some icy/slushy patches. I ran on the paths a bit, but they were pretty snow-covered so it was little agility game!
Because I know that those of you who read this blog, absolutely do it to hear me whine and rant about having ulcerative colitis.
But that’s what I’m going to do – right now anyway. I sort of feel like it’s taken oven a lot of my life recently and I need to vent.
Last time I talked about it, I told you that I got put on a new medicine that was so not working out for me. As a result I only took it two or three times and called it quits.
Two weeks ago, I called my doctor because my symptoms were still hanging around and my hair has been coming out like woah since about 2 months after I started Delzicol in the beginning of the year. He talked me into getting a flex sig (not explaining that, go Google it) to see how my colitis really was doing.
I felt so stupid having to go in for one, like he wasn’t going to find anything and I was just going to be a whining hypochondriac. Because my symptoms aren’t always that bad, but I’m just tired of dealing with them. Turns out, he was really glad I went in for the procedure and he’s surprised that I said I felt as good as I did because it’s worse than he (or I) thought. I confessed that I think I’ve just accepted things as “normal” that aren’t really and just felt like a whiney pants because I do have a disease and need to just get used to it. So turns out that none of that is true.
He told me I could stop taking Delzicol since I told him I feel better without it and I think it’s the cause of my hair issues. He prescribed me Uceris- a prednisone-like steroid without the crazy/bitch personality side effects. He also put me on a low residue diet for the next few weeks until our next appointment. That means only white bread and white bread products, rice and pasta (none of this whole wheat business), no raw veggies, only well-cooked carrots, asparagus and green beans, skinless, seedless tomatoes, well-cooked skinless potatoes, no sweet potatoes, only ripe bananas, peeled canned peaches, pears and mandarin oranges, up to 2 cups of dairy per day, no nuts, no seeds, no nut butters, no coconut, no berries, no dried fruits, no onions or peppers or garlic, no steak or tough meat, no lunch meat (which I don’t like anyway), only mild and well crushed herbs and spices.
It is such a boring diet. And it feels so unhealthy!! But the idea is to eat foods that are easy on the digestive tract and foods that will get mostly absorbed before they reach it. It is meant to give my large intestine a break so that it can heal. Soup is going to become my new BFF. With white bread to dip in it. I made a huge batch of chicken soup last night. (It was my first crack at it and I’ll share it later!)
My poor husband is largely doing this diet with me, although not completely because it wouldn’t be healthy for him, and he is completely on board with it. Whatever I do, he says he’ll do it with me and be there for me. I feel so bad because we got married less than 2 months ago, and this wasn’t supposed to happen…at least not already!
The doctor wants me to meet with him again in a month and talk about possibly going on biologic therapy, which I researched a little and honestly, it really scares me. It seems like it’s for people with severe active colitis and I really don’t think I fall into that category. Plus, the possible side effects just don’t seem pleasant. And although it’s such a low chance, it was mentioned that people on it are a fraction more likely to get lymphoma or leukemia (mainly lymphoma). It’s not even a side effect, just something that has to be stated, but I know too many people who have passed away from cancer, and that scares me so much. Dave did point out that letting it go and continue to flare increases the risk of colon cancer by more, but…I don’t know. That can be isolated and removed easier than cancer in your blood.
So I have been having some fantastic freak out moments the past few days. I’m not ready for a decision like this. Why can’t it just go away??!
How about all you lovely people? Have any of you been on biologic therapy for UC? What are your thoughts?