Managing A New Diagnosis- IBD-Crohn's Colitis

Welcome back to disability discussions! I took some time off due to being in the hospital and recovering from a major flare. This week, I want to explain my hiatus and share my new diagnosis of Crohn's/Colitis.

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What Happened:

In the middle of January, I took a supplement called a plasmologin that I had taken before with success. In the past, with the plasmologin supplements, I had a reaction that resolved on its own and then led to a positive effect on my gut health. This time, I had a bad reaction. The theory from my functional medicine practitioner is that the supplements released a virus that I was exposed to, causing the flare. I was running to the bathroom, and each day was getting worse. By the end of two weeks, I was bedridden, barely making it from my room to the bathroom, with horrible stomach pain. By January 16th, my doctor told me I needed to go to the emergency room to get a CT scan and some lab work. Once in the ER, I got yelled at for not being able to give blood for lab work or get an IV. I ended up getting a midline, finding out I have colon inflammation, and I was becoming septic. This led to me getting admitted to the hospital and being put on steroids, antibiotics, and IV fluids. Once in the hospital I was diagnosed with Crohn's, and ended up swelling up from too much IV fluids. I then developed POTS, or Postural Orthostatic Tachycardia Syndrome, due to the steroids. This made it difficult for me to go from sitting to standing due to my heart rate rising each time I would have to get up to run to the bathroom. Once admitted, my lab work showed that I was anemic due to internal bleeding. My hemoglobin numbers were not able to increase with iron infusions, so I ended up needing a blood transfusion. When getting a blood transfusion, I was very popular with the nurses as they needed to make sure that my body did not attack itself with the blood. I was able to go home after the blood transfusion, which meant my hospital stay ended up being 6 days. I had many nice nurses and doctors, and I want to say a special thank you to nurse Trish and Dr. White for being so helpful and supportive during my stay.

Ultimately, I was diagnosed with Crohn's Colitis, and am navigating choosing treatment options with western medicine, functional medicine, and nutrition.

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Recovery:

First, unfortunately, my 4-year-long relationship did not survive this diagnosis. The day after Valentine's Day, I was broken up with, and my new diagnosis played a role in that breakup. Navigating a new disability while also getting over a breakup has been very challenging. But if you are disabled, you deserve a partner who wants to be there for you as you navigate having a disability and who loves and supports you for who you are, and that includes all of you. I believe that once I am ready to date again, which won't be for a while, I will be able to find that too.

Secondly, I lost a concerning amount of weight, probably around 20lbs. I did not have that much weight to lose, and am now underweight. My diet centers weight gain while also being gluten-free, corn-free, dairy-free, low-sugar, and avoiding certain inflammatory preservatives. I am also taking peptides, and am currently deciding if I will go on a biologic or will address it through functional medicine and nutrition. I am working with leading experts with personal experience and am hoping to build a community of others living with IBD and my other disabilities. This is my time to lean into community as I recover.

Lastly, I am putting a lot of focus on my mental health. Managing my stress levels is an important part of managing IBD. I am planning weekly hangouts, increasing my therapy, my mom is helping me find yummy recipes, I got a monthly craft box subscription, I am trying to explore new hobbies and old hobbies I stopped doing, and my thesis advisor is working with me so I can take time this semester to recover before starting back up on my thesis. By centering mental health, I am addressing my stress levels so I can be a healthier version of myself. It isn't easy, but I think it will be worth it. If anyone knows of any fun retreats, hobbies, Pokémon Go groups, or other fun activities, please leave a comment!

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Thank you for reading about my experience getting diagnosed with Crohn's Colitis. If you have any questions or comments, please comment on the blog, reach out at @Anniekrollblog on Instagram or Facebook, or email me at Anniekrollblog@gmail.com. I hope to see you next week!