Why I Love(And Hate) Humira

Humira feels like a weekly reminder that I have an incurable autoimmune disease. That this is what my life is like now. That this is what I have to look forward to. And at times it’s depressing. I wish I didn’t have to be on medications but I know that this medication is my best option right now.

I’m not one of those people who’s goal is to get into remission and go off of my medications. My medications are the reason why I’m in remission. I don’t what to know what would happen if I had to go off of the Humira. I’m sure the results would not be good though. I also don’t want to risk building up antibodies to this medication. Once that happens I won’t be able to go back on it and that’s not work the risk to me.

It’s hard though to deal with the weekly shot. For me it hurts a lot. I can’t wait for Humira to have a sting free option. Some people who take this medication don’t feel that much of a sting but for some reason I do.

Do you have any medications you dislike? Why do you dislike it? Do you have any medications that you do like?

Until next time!
KenzieIBD

Autoimmune Protocol Diet: Week Three

Hello everyone.

This update is going to be a bit different. Because I had to stop the Autoimmune Protocol Diet unfortunately. My bowels this week pretty much had it. With this diet I was eating a lot of veggies and my colitis is currently not happy with that.

So Thursday I ended up having to take a sick day over this. I felt like my colon was in a vice grip and I had been having bowel issues for a couple of days so I just decided to stay home. I’m tired of making myself go to work when I don’t feel well. I also hadn’t been sleeping well due to joint pain. And Thursday was the day I decided I needed to get off of the AIP diet.

Now the plan is to try and redo the AIP diet in a couple of weeks. I feel like I need to do some soul searching and revisit the whole thing. It may mean introducing some OTC fiber tablets to my diet to help keep things regular. Or even slower diet changes.

But I felt that quitting the diet was the best option for me at this time. Going into a flare is not worth it. And I really feel that I was heading in that direction. My bowels were really starting to get torn up. In a way going back to my regular diet is going to be a test to see how that compares to what I was doing.

Until next time!
KenzieIBD

Autoimmune Protocol Diet: Week Two

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Mug cake/brownie I made Friday night. It wasn’t too bad. A little dry for my taste. Next time I’m going to try cooking it in my microwave a shorter amount of time. I got the  recipe from Don’t Eat the Spatula.

Today marks my 14th day on the AIP diet. This diet has not been the easiest diet in the world. Some days are harder than others. What really makes it hard for me is the fact that I have to take my fructose malabsorption into account. And to take that into account that means I have to double check everything on ingredients lists for the AIP diet and compare them to the FODMAP list of foods I can and cannot eat.

I also really like potatoes, and dairy and gluten type foods. It’s been hard to cut them out. So far I’ve cut the gluten out and the night shades. I have not succeeded with the dairy quite yet. It’s probably going to be the hardest thing for me to cut out.

Over the last two weeks I’ve noticed that my joints are doing better. I don’t wake up with them as achy as I used too. My bowels on the other hand I’m not so sure on. I’ve had some weird stuff going on the last couple of weeks on and off. So we will just have to wait and see what happens with that.

One thing I learned this week is that I need to check my recipes in the morning to see what needs marinated for the evening meal. This would help with not eating so late in the day. Some nights this week I was eating dinner around 9pm. Which we all know isn’t the best thing for you.

I did not do as much Yoga this week as I had hoped to do. Kinda forgot about it until Tuesday night. And by the time I remembered it that day was a bit late to be doing Yoga. If I’m too active in the evenings(like working out) I’ve noticed that I have a hard time falling asleep. Which is another thing I need to work on anyway.

Another thing I had a hard lesson on this week was to make sure I eat lunch! Before going on the AIP diet I would quite often work through lunch and not eat anything until I got home. I did that on Friday and it was a huge mistake. I was so hungry when I got home and I was ready to throw the whole diet thing out the window and eat whatever I wanted too.

Hopefully next week goes better. But it’s currently Friday night and I have yet to do any meal planning for next week. Oops.

Until next time!

KenzieIBD

#IBDAdvocacyTag

What form of IBD do you have?

On paper I have Ulcerative Colitis but my doctor has mentioned a couple of times that I probably have Inderterminate Colitis. So that’s pretty much what I identify as. There also isn’t a Inderterminate Colitis diagnostic code so that doesn’t help either. There was also that one time I had a pathology report come back and say Crohn’s Disease 🤷‍♀️ And the Humira is currently working fairly well and there is mucosal healing in my colon and rectum, so it’s hard to say for sure which IBD I have.

But at the same time there is a lot of speculation in the GI field that IBD is a spectrum disease. The most important thing is that I like my GI doctor, the medications are working and we know where my disease is most active.

Why is IBD advocacy so important?

So people know that they are not alone. Having a chronic disease can feel so isolating when you are first diagnosed. It is so helpful to meet people who know what you’re going through. And can help you navigate a very hard time in your life.

Describe a socially awkward moment with IBD.

Oh where to begin?

There was this one time on Facebook that I got told that I needed to read the healing word of God and pray more to cure myself.

Which was extremely frustrating because I’m not an avid Christian (I’m more or less agnostic) and my faith has nothing to do with my illness. Shit happens and I somehow got this incurable disease through no fault of my own. And praying to God to get healed isn’t going to cure me. Some scientist some day will find a cure and that will be what I need. Will it be through delivine intervetion? Who knows!

But telling someone that they need to read the bible more and pray more just blames the person who got ill and victimizes them. People who are chronically ill need compassion and empathy. Not someone to tell them where they went wrong in life.

What common stigma do you run into?

That it’s not that serious of a disease. That it just makes you poop. That it’s just a stomach ache and some diarrhea. That I don’t look sick.

All of these stigmas are so incredibly frustrating. There are people who have died from complications of this disease. IBD is so much more than pooping and a stomach ache. And I don’t look sick because I’m good at faking being well. And it’s my colon and rectum that are affected, not my face.

These stigmas are just a few of the very important reasons we need to raise awareness for IBD.

What do you want other people to know about IBD?

So many things.

That at times it is a hard disease to live with. But along the way you will meet some pretty incredible people who will become some of your best friends who will be there for you no matter what. If you are able I highly recommend going to a retreat for people with IBD. It will be an amazing experience for you and you won’t regret it.

That this disease affects me in so many ways. And just because I don’t look sick, doesn’t mean that I’m well.

The more I work and the more I do the more tired I get. But it’s not the same type of tired as everyone else. I fight my body every single day. It’s exhausting.

Until next time!

Autoimmune Protocol Diet: Week One

Today marks my seventh day on the Autoimmune Protocol Diet(AIP).  For those of you who don’t know, the AIP diet is a restricted version of the Paleo diet. The purpose of this diet is to take immune responsive(or potentially responsive) foods out of your diet and try to get your autoimmune diseases into remission. Here are the different foods I am not eating or drinking while I am in the elimination phase:

  • Grains20180316_2120521404242470.jpg
  • Alcohol Legumes
  • Nightshades
  • Dairy
  • Caffeine
  • Dairy
  • Food additives
  • Refined/Processed Sugars
  • Eggs
  • Refined/Processed Oils
  • Nuts
  • Seeds
  • Fruit and Berry Based Spices

I’m slowly processing all of this food out, and I will be for the next few weeks. Once I complete eliminating all of these foods I will stay in the elimination phase for at least 30 days and I can take that time out longer if I feel I need too. After the elimination phase I will start to reintroduce foods back in to see if I have any reactions to them.

So far this first week was hard. I felt awful on Monday night after not having any simple carbs for a couple of days. I had a headache and a very upset stomach. I was very hungry al20180316_212011792435822.jpgl week so I was carrying around snacks like clementine’s and beef jerky I made at home. I’m slowly not feeling so very hungry all the time as the week goes on. I’m looking into different “fat bombs” that I can make to help with this diet and the whole process.

The beef jerky was ok, it’s going to be a learning process with smoking my own jerky but I look forward to the process. I have yet to make any bone broth, but I plan on doing that soon. I bought some at the store this week and it actually had a hole in it! I was thawing it in a bowl of water and lost all of my bone broth! It was so frustrating.

I did try some new stuff this week. I made an arugula salad with fennel and grapefruit with a lemon vinaigrette. It was actually pretty good. I wrote up a meal plan for the week to try and keep myself on track. It helped out quite a bit and I didn’t hold myself rigid to this schedule. I allowed stuff to be moved around if needed.

Another thing I’m doing is keeping a symptom journal. I want to know if the new diet is helping and if I have any reactions to new foods I’m eating. So far the worst thing with this diet is the hunger and the lethargy. I foresee that going away as my body gets used to this new diet. It’s used to having a lot of potatoes!

My goal with this diet is to help me feel better. I’m doing well on my medications. My bloodwork is coming back great and I have mucosal healing in my bowels as of Oct 2016, but most of the time I still don’t feel like I’m 100% well. My rheumatologist believes that there is inflammation going on in my body that science just isn’t good enough to see yet. But no one wants to put me on anymore medications. So what I have left is diet. I haven’t really given a diet a go since I was diagnosed with a fructose malabsorption. I figured it’s worth a shot.

Until next time!
KenzieIBD