I Had a GI Appointment Today

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.

Humira & Fatigue Update

I haven’t really noticed much of a difference so far on the Humira. I still get urgency and the bleeding had stopped before I was even on Humira. Although I have noticed that I’m, uh, having a hard time evacuating my rectum/anus. It’s something I need to talk to my doctor about at my next appt on the 18th. I have no idea what’s going on. Maybe I should take more soluble fiber?

The fatigue is definitely getting better. I’m not as bad as I was a few weeks ago. A friend even noticed that I was looking better 🙂 I’m glad I’m on the mend but at the same time I’m wondering what the inside of my colon looks like. I’ll hopefully find out at my next doc appt when my next colonoscopy is. Not that I want one, but it’s the best way to take a look and see how things are.

IBD Fatigue Scale

Fatigue is probably one of the hardest symptoms to manage with IBD. I’m really glad that research is being done on it. Some GIs seem to worry more about the bowel movement part of the disease more than anything. While that is definitely important, I think it’s also important to also look at the whole picture for a patient with IBD. I’m glad my new GI doctor took me seriously when I said I was tired all of the time and ran some blood work.

The iron supplements have been helping slowly. I am slowly starting to feel better but there are still days that I do feel really tired. And that, at times, does go along with how many bowel movements I’ve had in a day. The more I have, the more tired I will be.

If you’re interested in taking the fatigue scale test, click here.

Weekend Update & Books

I think I actually had a decent weekend for once. I was able to get some stuff accomplished even though I do tire easily with my anemia. It helped that a friend was able to come over yesterday and help me out for a little bit. We painted my master bathroom and did some dusting in the living room. I’m really grateful when she can come and help me out. I can actually get stuff done that I need to get done.

I also managed to read TWO books this weekend. I haven’t read that many books so quick in a couple of months. It took me a while to get through Guns of Avalon. It took me almost two months to read which is super slow for me. I can easily read a 300 page book in a day if I feel like it and that book wasn’t even that long. So far this year I’ve read 45 out of the 50 books for my goal. Which is pretty awesome. I don’t think I’ve read this many books in a while. I also played some video games this weekend(Siv 5 and Anno 2070) which is always a plus.

The next book was also decided for book club. We’re reading Brain on Fire: My Month of Madness by Susannah Cahalan. I’m trying really hard to slow down while reading it so it can sink in but it’s really interesting so far and I’m having a hard time not just blasting through it. I’ll do a review on it once I’m done reading it.

I also want to get an eReader. I’m pretty set on the Nook Glowlight right now. I just have to decide when I want to get it. I have to travel for work in the next couple of months and it would be nice to not have to pack several books to read. I always get worried that they’ll be damaged in some way. Or that I’ll run out of books! The Nook is also a lot lighter than some of the books I read and I can carry a lot of them on it. Another advantage is that I can rent books from an online library for Oregon and load them on there.

I’m starting my Humira shots tomorrow which is slightly nerve wracking but I’m hoping all goes well, I don’t have a bad reaction to it and that it works for me.

Frustrated

Why am I frustrated? I’m over being anemic. I’m getting shortness of breath(SOB), chest pain, tachycardia(elevated heart rate), hot flashes and dizzy/feeling light headed. I. Am. So. Over. It.

I went and saw my PCP today because yesterday I had tachycardia(M checked it and it was 130 beats per minute(BPM)), I was light headed and was feeling really warm just walking around. I knew I wasn’t feeling right and they were able to get me in today. So they ran some labs, took a chest xray and did a 12-Lead ECG(aka EKG) on me. All of which came back normal except I had a slightly elevated WBC count. Which I figured I already had because I have active inflammation in my colon. I’m also getting an inhaler. Who knows how much that will help though because when I get SOB I’m not wheezing.

I just read about Albuterol and apparently it does treat SOB and chest tightness. Hopefully whatever I get helps. Unless I randomly developed asthma at 25? My younger brother has it so I guess it’s a possibility. Although all of those symptoms could be related to the iron deficiency anemia. It just sucks because I just want to be better already.

I’m supposed to be a 25 yr old happy person in my prime but I feel like my IBD is robbing me of my health and my life at times. I just want to be better. I haven’t ever been so sick in my entire life. The last 6 or 7 months have been the worst between being hospitalized, multiple colonoscopies, allergic reactions to medications and now I’m dealing with anemia on top of everything else.