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!
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!
Did everyone have a great new year? We had a little shindig at our house…
…and, of course, had pork n sauerkraut on New Year’s Day.
On Friday, I got to take my new Garmin Forerunner 220 on its first run! It was short and sweet and Dave came along. So much fun!
Saturday, Dave and I ran a local Wellness Dash. It was freezing rain and nasty all morning, but luckily it stopped by noon when the race was. I came in the first female finisher!
I also won the crazy hat contest, which means a gift card to Dick’s Sporting Goods! Winning!!
Monday I ran on the treadmill at work with my FR220. It was a little more generous with the mileage than the treadmill, but pretty close. I’ll take it. And may I add that it’s my 5th run in a row without any colitis issues! HURRAY! Gosh, I hope this streak continues.
Yesterday was a lazy day. I got into work late because of weather and traffic (like WAY late), so I skipped my lunch/gym break. Boo.
Today, no lunch break again because I left early for a doctor’s appointment, so when I came home I did two yoga videos from Amazon. Nothing too tough, but it felt really good. I haven’t done yoga in sooooo long, it was great to stretch it out. I need to get back into it!
Then some tomato soup and grilled cheese for dinner. I’ve been on a crazy soup kick lately.
And coffee. All the warm beverages!
Now, I’m flashing back to my teenage years and watching Sabrina the Teenage Witch on Hulu.
How about you? How’s your first week of 2015 been? Have you made any resolutions?
Check back with me tomorrow to see what mine are!!
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?
In case you missed all the Facebook and Instagram hype, yesterday was National Running Day. Everyone was putting in their miles and posting them on various social media sites. Did you run? Did you post?
I didn’t. I had planned to run after work, so I didn’t bring clothes with me in the morning. Well. My stomach was wonky all day, all right, okay, but I was still going to get out there. Except that it started raining around 4 and didn’t quit. And my office/gym is on the other side of the city from where I live. So I just embraced the rest day and made some dinner instead.
Then I decided that if I’m not going to run, hell I might as well make brownies! But not just any brownies, no. Brownies with Nutella frosting! O.M.G.
To my credit, I did do some ab work before letting myself indulge in a brownie and some coffee. So that counts, right?
I ran an easy 3.37 miles today. I tried to keep it slow and do negative splits and I really thought I was taking my time, but I started with an 8:35, then tried to slow down for an 8:41, then a stomach stop-off, then a 9:05. I have no idea how I’m going to handle my stomach Sunday. Arghh…
But the run felt nice so that made me feel good! 🙂
Tomorrow after I work, I’m flying up to Boston to meet Danielle for the Heartbreak Hill Half Marathon Weekend! I’m equal parts nervous and excited. Part of me just doesn’t give a hoot about my time (to an extent) because I know I didn’t put enough work into training this time around, so I just want to enjoy the weekend and race. On the other hand, I don’t want to be a slow poke.
But what I’m really nervous about is my stomach. Because, you know, I’ve been stopping every mile lately and that’s just not a good thing. And I don’t even know how to fix it. That’s the thing with colitis; sometimes there is nothing you can do except tough it out. And. It. Sucks. UGH.
Well that’s my ranting for the day. Your turn!
Is anybody else running the Heartbreak Hill Half this weekend? Anyone doing the hat trick? Overachievers. 😛