Well, I had hoped to be past the TPN assignment by the time I wrote my next post, but no luck. I am weaning, but I still have a bit to go thanks to the never-ending parade of curve balls. It looks like my PICC line (not my idea of a fashion accesosry) and I will be attending the Craft for Cures Gala I’m co-chairing on Oct. 24th. Good thing I got a new dress to cover the arms.

Before I get into that, here’s the scoop on my appointment with Dr. G a few weeks ago, where we went over the capsule results, an overwhelming plan, and what happens down the road if surgery is needed. It was a tough appointment, to say the least. I knew the capsule endoscopy didn’t look great, but I had no idea how severe my disease had gotten. It’s probably the worst flare I’ve been in, so much so that in hindsight, both Dr. G and I wish my surgeon had simply taken this section of bowel out. There are deep, large ulcers with significant inflammation, and the camera got stuck for a few hours. That means we aren’t sure we can use this test again, which is a huge problem because it’s the only way to see this area. And since my CT, MRI, and labs haven’t shown active disease, tracking how I’m doing is going to be a bit of a guessing game based on my symptoms.

The plan is in motion, and I’m grateful for it. I have two rounds of Tremfya in me and started my Entyvio infusions last Friday. Once I’ve had two infusions, I MIGHT be able to start weaning steroids, and once those dip a little lower, I’ll add a third Crohn’s med. That’s more than I’ve ever been on, but we need to get really aggressive. Surgery down the road is likely, and all of us want to avoid it as long as possible. It’s also pretty apparent that Dr. G is unhappy with how my surgeon handled things. When the time comes, we’re leaving UCHealth for an outside surgeon he really respects, who is known for complex cases. That’s a lot to swallow, and I’m trying my best to focus on the now. Easier said than done some days, but my GI therapist is helping me a ton.

Now, the TPN. I hate it. Really, I do. I understand how important it is, but being hooked up at night to a noisy pump makes for a terrible roommate, especially on top of not sleeping from the steroids. The good news is that I’m eating better by mouth, and last week I got the green light to go to TPN every other day. It took convincing four different people to get Dr. G to agree. He’s so worried. I’m not sure I did my job getting enough calories in on the off days this past week, but I’m trying. Eating a lot still isn’t easy, and my stomach has shrunk, so I fill up quickly.

I see Dr. G in nine days. He’ll lay eyes on me and likely decide what to do about the TPN. I’m not holding my breath if things don’t turn around in the next week. I’m so much better, but it’s far from perfect and many days not great. I’m probably not to the level Dr. G wants, and getting as much nutrition as possible is key to getting stronger and healing.

I had been feeling a bit more confident until a few days ago, when I developed an opening at my suture line. It’s strange to have this happen eight weeks after surgery. I see wound care tomorrow and hope to God this isn’t a surgeon issue. My nutritionist and Dr. G’s nurse both think nutrition and steroids are playing a big part, since steroids inhibit healing and malabsorption certainly doesn’t help. They’ll add extra protein to my TPN bags, so my bags are officially getting an upgrade, too.

Steroids continue to be the devil drug. My sleep is nonexistent, but the bags under my eyes are thriving. I look terrible, and while I try hard to cover them up, it doesn’t fool anyone. My heart also races with palpitations all the time. I know steroids can do that, but I’ve never experienced it before. It’s a strange feeling to go from a resting heart rate in the 40s to the 80s or 90s, like I’ve just sprinted a lap while sitting on the couch. My nutritionist wonders if my PICC line slipped, so we’ve requested a chest x-ray. I’m hopeful Dr. G will agree so I can make sure everything is okay with my heart.

Despite all the obstacles, annoyances, and honestly so much discouragement, I’m really looking forward to the Gala. My team and I have poured our hearts and souls into this event to raise money for the Rocky Mountain Chapter. The room will be full of people who matter to me: my amazing siblings and their spouses, my aunt and uncle, friends, many doctors and health care workers from UCHealth who know my story, and over 250 people connected to other patients. It’s going to be wonderful, and I’m so happy to have this in my life. Working with these awesome people toward a common goal is truly therapy for me. The timing is perfect, but also so not perfect. I hope a lot of paddles get raised and a lot of money gets spent to make life a little better for all of us. Open those wallets, friends!

In the meantime, I’ll enjoy my night off from TPN and head to wound care tomorrow. I’ll also get a chest x-ray, iron labs, and an antibody test to make sure I’m not building resistance to the Entyvio, and keep working on getting in the calories I need. I’m really trying. I just don’t think I’ll convince the team to let me loose, and I can’t say I disagree. That’s hard to admit, but I really don’t want to screw this up. Thank you, as always, for following along and for all the love and encouragement. It means more than you know.