Yearly GI Doctor Visit

December 5th was my yearly visit with my GI doctor. It was a very long day by myself(my trusty copilots are all out of town ☹). My doctor is 2.5 hours hours away(350+ miles and 5+ hours of driving!) and my appointment was delayed over an hour(procedures ran log, which is fine. I don’t want my doctor to rush those). But I did eventually see him. And I came home with a goodie bag.

Over the last month or so I’ve been getting more symptomatic. I’m not really in remission, but I’m not in a raging flare either. But symptoms are bad enough some mornings that I get delayed leaving the house to go on site for work by 2 hours or so. Which sucks. And I try to watch how much Imodium I’m taking.

So me and my doctor settled on budesonide. Which is better than prednisone! But I can’t take any other medications because I’m allergic or get severe side effects from them. And my last colonoscopy showed that the Humira has made the inflammation in my colon go down a lot. And my doctor is pretty sure I have #IBS along with #IBD(yey me!). So I’m kind of stuck with steroids at the moment.

9mg for 10 days(yey samples!), and then I will go to 6mg for a month and we will evaluate how I am after that. Hopefully it helps things settle down. My joints have also been really achy, which is unfortunate with my line of work. But fingers crossed I don’t get crazy side effects from it 🤞

 

I’m Getting a New GI Doctor & Fatigue

I drove 3 hours from my home today to meet with a new GI doctor. The lady I met with is pretty cool(I’ll refer to her as Dr. S, she’s a nurse practitioner). She spent about an hour with me and M today working on finding out my history and answering any questions we had.

She was surprised that my doctors hadn’t tested me for Celiac’s Disease. I’m getting blood work done on that and she’s also checking me for an iron deficiency along with doing another CBC panel. She was also surprised with the fact that my current GI doctor hadn’t ran any recent CBCs after my flare up from a couple of weeks ago. I also thought that was weird. You’d think after how high my white blood cell count was that they’d want to see if it was going down or staying the same. Dr. S also asked if they have done any CT scans, any small bowel studies, or if they’ve done an endoscopy. Which they haven’t. So I may be getting one(or all) of those in the future.

While I was there Dr. S was able to go and talk to one of the other doctors at the office. Her college felt that I have Indeterminate Colitis. Dr. S did say that the next step for me is to go on the biologics but that they don’t normally use Cimzia out here(I live on the West Coast) because most insurance companies out here don’t approve it for some reason. I told her my doctors chose that because it’s a class B drug which means it won’t affect a fetus when I decide to start having babies.

Dr. S seems pretty invested in the whole IBD world. She went over the Paleo and FODMAP diets with me while I was there. She really wants me to try them so I may do the FODMAP diet first. I already have a book for it by Dr. Shepard. She said that it will probably help with the bloating. Which I get a lot of unfortunately. So I have some research to do over the next week or so! She also wants me to do an elimination diet for lactose but I’d rather just do a hydrogen breath test for it so I will be calling my insurance company to see if I can find an in network lab that they’ll pay for.

I was also able to get a restroom access card while I was there. They have them for the state that I’m in and I was able to get one signed while I was there which was pretty awesome. I’m not sure why my old GI practice never did that. So now I have four different ones! I’m going to have to look into getting it laminated though since it’s just on a normal piece of paper. Or maybe I’ll just use some packing tape.

I decided to switch to Dr. S because she took so much time with us today. And is running some tests that my doctors should of already ran. I also feel like this is the best decision for myself right now. It sucks that they’re three hours away one way but I’m hoping that I can get a better level of care there. I feel like my current/old GI practice could of done more to rule out things that could potentially be wrong with me. So, we shall see how the next few months go. It’ll be an all day thing to see her but I’m hoping that in the end it’s worth it. If not, I can always try and find another GI doctor.

I still haven’t started the Cimzia so I need to call and find out what is going on with that. Hopefully nothing too serious. I also have no idea what is going on with the home health nurse so I also need to check into that. My symptoms have calmed down after I went off the Imuran but that doesn’t mean that my colon doesn’t have any inflammation in it currently.

The fatigue has been pretty bad the last few weeks. It can be so hard to do what I need/want to do every day. Many days I have to decide what I’m doing for the day and only do those things. I just don’t have the energy. Maybe the labs that Dr. S  is running will show something that can be fixed. I know that anemia can cause fatigue and I’ve been wondering if that’s what’s wrong with me. Especially with the bleeding I’ve been having on and off the last few months.

There’s an article/blog post that explains the fatigue that I deal with really well. It’s called The Spoon Theory. And it’s just not me who suffers with chronic fatigue either. Anyone with IBD does and many people who have auto immune disorders do. Along with people who have chronic diseases. So it’s just something that’s good to keep in mind when you know someone who suffers from stuff like that. It’s extremely hard to deal with and to explain to people. So if you ever hear me say that “I’m running low on spoons,” this is what I’m talking about.