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.
I’m glad you found someone so good! I didn’t realize your old doc hadn’t tested you for this stuff. That does seem negligent to me. My doc runs tons of labs. I hope you’re able to get some answers and then some relief!
For what it’s worth, diet changes have been really helpful and important to me. I’ve been vegetarian for 12 + years and can’t imagine eating meat again, so diets like paleo/FODMAP/SCD don’t work for me. But I’ve eliminated dairy, eggs, gluten, and corn, and that’s really helped. If you ever want to talk gluten-free products, I can tell you what’s good and what’s gross.
I hadn’t really thought about it until Dr. S mentioned all of that stuff. And it makes me wonder why the other office never did. Are they being negligent/lazy? Blood work is pretty easy and one of the least invasive procedures that can be done. And it doesn’t take long at all. I’m one of those people that wants things ruled out. And it’s not that hard to rule those out. And I’ve told my old GI that I’m feeling fatigued multiple times and they haven’t done an iron deficiency test. And with how much bleeding I’ve had over the last 6 months I feel it’s pretty important to find out what’s going on there.
I haven’t done a lot of diet changes since I got diagnosed with the fructose intolerance. I keep a food journal but I just pay attention to what my symptoms are for the day. Like bloating, abdominal pain, ect. I need to start paying attention to how many BMs I’m having. I mean I do but I don’t look at it being food related that often. I really need to sit down and research what my options are for diets. So far I’ve just eliminated some fruits and vegetables that make me bloated and gassy. And I love me some dairy so cutting that out would suck 🙁 I’d be looking into those lactaid pills if I find out I am. If I do go gluten free I will definitely be asking about gluten free products! I tried making gluten free scones once and they were gross 🙁
What good news that you found a doctor who took the time to listen to you and go over all options. That’s great she discussed diet, mine didn’t really mention it, said I could do my own research because it’s different for everybody. I hope that the blood work brings some answers for you! I was just diagnosed with anemia after this last flare, not sure how we’re going to proceed. So glad you’re getting the help you need and I hope this brings more positive things for you!
I’m glad I found Dr. S. She’s been great so far. I still have to find what works for me but she really recommends going gluten free and the Paleo diet. I also hope that my blood work brings some answers for me. I’d like to have some semblance of an idea of what’s going on with everything. I should know sometime next week what’s going on. I hope that your anemia get’s figured out! And thanks!