And happy holidays to everyone!
The second Remicade infusion went very well. No reaction as I was prepped with the Benedryl and steroids beforehand. No red face the next days either, so Yay!
I’ve been able to eat and drink pretty much anything I want.
I’ve been distracting / immersing myself in the new Star Wars MMO, playing a dark Sith who makes the evil choices whenever she can. The game is full of great cut scenes where the player makes a choice that impacts dialogue and story development. Great fun.
Twice now this week I’ve had times where it’s like my body just decides it has had enough. And by that I mean an all over tiredness, weakness, immediate urge to crawl into bed. I’ve been a week at 15mg of Prednisone, and wonder if that has anything to do with it. I’ll be scaling back to 10mg this week. Hopefully my body can start to recover from the adrenal suppression it’s been in. With the pred, it hasn’t needed to make its own.
Christmas was a good, quiet affair. Gary’s mum came over Christmas eve and spent the night. Gary made roast chicken and veggies. The next morning we indulged in their tradition of lox and bagels for Christmas breakfast. I didn’t make the coffee cake that I’m used to having Christmas morn, as it seemed like bagels were enough bread.
One of the presents Gary got me is a new headset with mic for my computer. My old one worked with the laptop, but was too outdated for drivers with the new. With the new headset I can play SWTOR and chat with guild mates on Ventrilo while playing.
I could have been content staying in my Jammies all day and playing and napping, but we drove up to Marietta to see family friends. Technically they’re not related to Gary’s family, but they’ve known each other so long it’s always like being with cousins and aunts and uncles.
At the end of the night I got that all over tired feeling, like my body was crashing. Gary drove us home and he tucked me into bed.
I’m scheduled for my 2nd infusion tomorrow. Monday I met with my gastroenterologist and he warned me that when a patient has a reaction with the first infusion, the second time there is greater chance to have a more severe reaction since the body is ready to fight it- trouble breathing, or chest pains specifically. People can also develop antibodies to Remicade to where it stops working for them at all. He says they’ll prep me like before, except also administer the steroids beforehand, and make sure the drip goes slow. I told him take 4 hours if need be! If my reaction is bad though, he says there wouldn’t be a third infusion in January.
I’m desperate for it to work. I so badly want to feel normal again all the time. I’ll put up with the Remicade effects for a few days to get weeks of normality. I’m worried that I won’t be able to continue with it past the 2nd time.
Other than Remicade, there’s the Humira shot. But it’s not approved yet for UC, just Crohn’s and Rheumatoid Arthritis- so insurance wouldn’t cover it. It may be a year till it’s approved, though my doctor says we could petition the insurance to accept Humira.
The only “cure” science knows at this point is surgery to remove the colon. And while that’s no picnic, it’d mean no more suppressing my immune system (a good thing around school children), no more worries about what and when and where I eat, no more planning what I do based on where bathrooms are available, no more expensive prescriptions, no more recuperating from poisons.
Wish me luck.
Remicade must be to UC what Chemo is to Cancer.
I slept in on Sunday. No 2:30 am wake up. Later even took a nap. Woke up from that with the pink cheek-itis, but took a couple Benedryl and was pretty useless the rest of the day lol.
With Internet down there wasn’t a ton I could do anyhow. I did do lesson plans and saved them to a flash drive to take into work. I didn’t create all the flipcharts for the Activboard that I usually do. It was perversely nice to have a technical reason, not just a health reason to not do a whole heck of a lot.
Monday at school went fine. About 2:30 started get hot cheeks and a coworker confirmed they were red, not pink. Took a Zyrtec, but half an hour later no change soon took 20mg pred. Left work about 4:30 after being there since 6:30.
Yeah, I’ll sleep well tonight.
Friday I had my first Remicade infusion. I went in at 10am. They had trouble finding a vein at first but they got the drip in. I was given 2 Tylenol and a Benedryl before starting. About 45 min into it, I started to feel warm, particularly my cheeks. Sure enough they were red, in what is called a “butterfly rash” across both cheeks and nose and chin. Like a sunburn. Cheryl, my nurse, stopped the drip and put a steroid into the IV. She told me I was having a reaction. My body was fighting the Remicade. She alerted my doctor, who came to check on me. They asked if I had trouble breathing or chest pain. Nope.
After watching the redness fade to pink, and with no further reactions, they started the drip again. They had more Benedryl ready for the drip just in case it was necessary but it wasn’t. I fell asleep for the last hour. Overall the drip took 3 hours.
My nurse was wonderful. She said she’d been diagnosed with Crohn’s a year and a half previous and that she knew exactly what I was going through.
I left with a low fever of 99.7, which Cheryl said was typical, and that I could take Tylenol again at 3pm. I was to take Benedryl again before bedtime.
I spent the remainder of that day reading and napping.
Saturday I wasn’t sure of what to expect. Some people report no symptoms, others a type of fatigue.
As to my UC symptoms, they’ve been dramatically less. No blood in my poo. No thousand visits to the loo. I did wake up at 2:30am thinking it was UC, but nothing came through. I slept till 6 and even then only had a little output, with some cramping.
I felt overly ambitious. I needed new jeans and some groceries, so I was out the door before 9am. My small reserve of energy left me while driving. I felt very tired. I got to the clothes store (they were having an early bird sale) and as I walked around, I could feel my cheeks getting hot. A check in the dressing room mirror confirmed I was having the reaction again.
I made my purchases, and still stopped at Publix since I was so so thirsty. Among my groceries I included 3 half gallons of Gatorade. One of which I opened in the checkout line, drinking a fourth of it at once.
As soon as I got home I took 20mg prednisone and 2 Benedryl, and called the 24hr number as I’d been instructed. After consulting with the nurse, and her consulting with the doctor, and calling me back, they said that since the reactions weren’t progressing to chest that they weren’t overly concerned. They’d let my Gastro know on Monday of the reaction.
The rest of the day I felt awful. No energy, like I was battling a flu. I did sleep some, but probably not as much as I could have.
Went to bed about 10, slept through till 4:30, then back till 6. Wonder what Sunday has in store for me.
That is the mantra going on in my head right now. Tomorrow I get my very first infusion! Gastro’s office called yesterday to let me know my Remicade was ready, and for at least the end of the year- NO copay!! I am so frickin’ ecstatic about this you have no idea. After tomorrow I have my second infusion in 2 weeks, then another towards the end of January. After that it’s every 6-8 weeks. Even if my insurance says I have to pay ginormous sums in the new year until my deductible is met, my coordinator says we’ll apply to Remistart for assistance.
I thought I’d be able to do it after school, but I have to do it during the day so I stayed this afternoon and got everything ready for a sub. I hate being out, but I am glad I have the whole day. No telling if I’ll have a reaction or how it’ll make me feel.
Gary and I went out for sushi to celebrate. I haven’t had sushi since…. September? Too long. I had it with the seaweed, and the wasabi, and a cold Japanese beer- things you’re supposed to avoid with UC. Damn it felt good to enjoy food again. Even had some green tea ice cream. While I was eating said dessert, a cop who was waiting on a to go order asked in surprise if that was wasabi I was shoveling in. I laughed and did a bad Mater impression from Cars 2. After explaining what it was, we gave him the unused spoon with a taste of it. This led to one of the most delightful conversations ever had with a stranger. From tea to food to love and marriage and honeymoon. Gary and he are kindred spirits when it comes to enjoying food. Even better though, the Sgt. Helped me see once again how special a relationship Gary and I have. For that I am truly grateful.
When you just want to sleep on the toilet floor because you know
it’s pointless to go to bed, you will be up in few minutes anyway. — Anonymous at ihaveuc.com
Went to my doc yesterday and let him know I’m bleeding and in pain. I haven’t upped the prednisone, and wondered if he would. Instead he recommended we start the process to get Remicade authorized. I was all for it. Feels like I’ve tried the others- Lialda worked for 2 months then didn’t. Prednisone in June, then again in September and am still on 20mg. Plus Imuran 75mg.
A friend has recommended I try anti-anxiety drugs in combo with the pred. Going to ask my doc tomorrow when I go back to get my arm checked.
So yeah, the Process.
I had to get tested for TB. My arm gets checked tomorrow. I had to have blood drawn for a complete blood count, as well as a metabolic one. Then I had to go to another building on the hospital campus and get a chest X-ray to make sure I don’t have pneumonia. That was all yesterday. Paperwork takes a couple of weeks, and I’m trying not to freak out about ” what if my insurance either doesn’t cover it, or covers so little I can’t afford it?” I’ve read about people citing costs from $2k to $8k. Holy Crap!! There is a program called Remistart I could apply for, but man oh man. I can’t go into debt that much. I’m trying to get married and have a honeymoon!
I had an accident at work today. I consider it “my own fault” for eating breakfast later than normal. Usually I eat around 5:30 am and that gives me a 45 min window to go to the loo however many times I need to before driving to work. It was about 7:50 and I had a couple of twinges, but with kids in the room I was trying to hold it till an adult came in. Instead it started to come down, and I’m speed walking out of the room, past my AP’s office asking quickly can they watch my kids, and continuing on to the adult bathroom.
These days I wear Depends. You can laugh if you want, but it’s saved me several pairs of undies, as well as having to change pants. It’s absorbent too, which is needed since my colon isnt absorbing water properly. So I’m in the restroom and see that it’s quite a mess. I was in such a hurry I forgot my purse with the spare pair in it. Luckily I had my phone in my pocket. I call the front office, explain the favor and where the purse is and where I am, and they’re able to get it to me. I am so blessed to work with understanding people. My AP came to check on me and ask if there was anything I needed, or was there anything they could do for me. I said I’d had to change, but came prepared, and was just making sure I was really done.
I returned to the room, and began to teach like everything was normal. Two people checked on me later. I think one wasn’t sure if I’d thrown up or what :P
Well, time to take a pain med and sleep for the night. Gnight!
This is the first year teachers in my county have gotten the entire week of Thanksgiving off. It was sorely needed, to get rid of the cold plaguing me. I slept the first few days pretty constantly. Thursday my fiancé and his mum and I went to see The Muppet Movie. It was really sweet. We had lunch at Folks restaurant. I got a salad with chicken strips, grilled. It was huge. I found that I could eat about 3 of the 6 strips, and some lettuce before feeling full. Full isn’t quite right. Uncomfortable- as if just eating made my gut tender.
Went home and took a nap before heading to a friend’s house for his Thanksgiving meal. Every year he puts out quite a spread. He smokes his own meats. That night there was two turkeys- one roasted one smoked. Smoked bison, Kobe brisket, pork loin, salmon, and prime rib. There was another beef roast in the oven as well. He was afraid of running out of food for 38 people. Guests brought desserts, veggies, cranberry sauce, stuffing, potatoes, etc. I decided to have mostly meat. I tried some of most of the meats, but the best was the pork. Melt in your mouth, finger licking smoked goodness. I had some potatoes mashed, and a little cranberry jelly (can shaped, please). I tried a little of each of the desserts, and had half a cup of coffee. It was great food and super company.
The next morning tho it felt like I had a large rock in my belly. Pain, discomfort. Didn’t feel like eating all day of course. Took half a dose of milk of magnesia and that helped to get things moving by the end of the day.
Finished my round of antibiotics today. Yesterday and today my gut has had a lot of pain. Feels like a combination of sunburn inside me while wearing pants that are too small in the waist. And I have blood today with the ulcerative colitis. I’m still on the 20mg of pred. And don’t want to go higher on my own. I will meet with my gastroenterologist tomorrow instead of a week later. Need to get the ball rolling on the Remicade, imho.
Cried a lot this weekend. Partly the pain and partly the stress from going back to work today. I’m glad my fiancé understands and gives me a shoulder to cry on.