I got to meet with Dr. M today. It was my first time seeing him and I really like having him as my new GI. He took the time to answer all of my questions and even write me a letter for flying with my Humira. I have to fly next month for work and I wanted the letter just in case the TSA decides to be turds about it.
As of right now, as long as my health stays the way it is or continues to improve, I don’t have to have another colonoscopy this year! My doctor isn’t planning on doing another one for another 8 years unless something happens. And he wants to do it then to check for Colorectal cancer. So, fingers crossed I don’t have another flare anytime soon. He did say that while I’m on Humira we should be able to manage flares with it. He’ll have me do a dose a week for a few weeks and then go back to the bi-weekly.
I also get to go off of the budesonide in October. I’m so happy I get to go off of the steroids. Hopefully it goes well and I don’t go into a flare. But I can’t wait to be off of it.
He does want me to get the flu vaccine but I can’t have the live virus. He said that the pneumococcal vaccine would be a good idea as long as it isn’t a live virus either. I’ll be talking to my GP about this when I have my yearly checkup done in a month or so. If she can just do it at the office that would be awesome.
I did decide to get the lactose intolerance test but I didn’t know that I had to fast to have it done. I thought I’d be taking a kit home or something but I guess they’re doing a blood draw. So now I have to drive 1.75 hrs to the closest lab facility for that hospital so I can get that done. So now I need to find time for that. I also got another CBC panel and iron panel ran so hopefully all of those numbers come back good.
So, I may be heading into remission. If you’re wondering what that means, here’s some information from UCLA:
For patients with Crohn’s disease or ulcerative colitis, your disease is either active or quiet. When your disease is in an active state, it is causing symptoms such as diarrhea, pain and weight loss. At the opposite end of that, your disease is quiet, under control and in a state of remission.
I don’t know how quiet IBD has to be for a patient to be considered in remission. I still have urgency every so often. And some abdominal pain. But I don’t have any blood in my stool and I’m not going to the bathroom 10 times a day so I got that going for me. Maybe remission varies from patient to patient? And just to be clear for people who aren’t familiar with remission when it comes to IBD, it does not mean I’m cured. It just means the disease is quiet and not making me hate life.
The one thing that’s really nice about feeling better is that I’m starting to become more active again. I’m working on going to the gym more and I’m able to do more chores around the house. I’m so happy to be doing better but at the same time I worry that it won’t last very long. All I know is that I need to take advantage of this time because I don’t know how long it will last.
Dr. S is still leaving my diagnosis at Indeterminate Colitis. My latest colonoscopy didn’t show any granulomas and because I don’t have any fistulas he can’t really say whether I have Crohn’s Disease or Ulcerative Colitis. And it doesn’t help that my inflammation has been bouncing around. Ah well, if I have to go the rest of my life without a confirmed diagnosis I think I’ll be ok with that.