#ulcerative

12/12/2022

I look disgusting, I feel disgusting, I'm ill constantly and I'm probably going to die due to medical fucking incompetence at hospital, and I fucking hate that people have this power and have conditioned and dictated the way I feel over years and years

How are you doing?

CROHN'S, HUMIRA &ANXIETY It's been a long time since I wrote a "real" blog post but some messages I got recently reminded me that I've never gone into depth about my mental struggles with medication and how I overcame those. Most of you might know that I started Humira over three years ago. I might have mentioned that it was a scary but kind of inevitable decision. When I look back to the pre humira time I honestly don't know how I managed to live like this: I wasn't able to eat properly and lived on ~ 1500 calories of toast, yoghurt, applesauce, oatmeal and rice. I studied full time in university back then so my day was mainly filled with lectures, practices, my bathroom and my bed. Since I was super weak, malnourished and underweight all the time I couldn't even take the steps some days. I hated groceries because I didn't want to think about food. And my arthritis was so bad that I desperately needed to go for a walk all the time because lying in my bed made the pain and stiffness even worse. Everyday was a struggle and my GI had told me that I needed to start a biologic medication (such as Humira or Remicade) months before. But I was anxious. When I had been diagnosed with Crohn's disease I told myself that I just had a mild case and that I probably wouldn't need one of the scary immunosuppressive medications. A few months later I started Azathioprine...and then the next flare up arrived. This is when my GI told me that it was time to think about humira. I was classified as moderate to severe and felt like I'd lost every sight of control that I ever had over my life. I lied awake for several nights reading every single information about humira. I had panic attacks. I was used to being miserable but not used to being on aggressive treatment for my disease. I procrastinated making a decision for months. I'm thankful that I had great doctors back then that supported me and gave me the time I needed to make my own decision. My GI even offered my to do my first two Humira shots by his side so that I would feel more comfortable. My first humira day came and I was still terrified but I managed to do it. I talked to my GI all the time while giving myself the injections. It was way better than I expected it to be. Humira was my magical drug. I went in remission almost immediately. I struggled with infections occasionally and I even had some flare ups after a year or two which meant that I needed to add Azathioprine back into my medication. But I was finally able to enjoy life again. I won't lie to you: The anxiety and panic issues weren't over after I went into remission. It even got worse after a few months. Maybe because I had more energy to invest into panic attacks. Maybe because I forgot how miserable I was before starting humira. I've never been diagnosed with anxiety or panic disorder but I'm pretty sure I dealt with it back then. Fortunately I had great support by my family and friends which made it easier to deal with everything. Now I'm pretty okay with it. Sure - I worry occasionally. But that's normal I guess. I found a few things that helped me to get over it: Reading blogs, talking to other patients, journaling, traveling, running and exercising in general. I think if I could go back two or three years I'd be more honest with my doctors about my anxiety and ask for support. It's a draining thing when you try to recover properly after years of disease activity. When I comes to the safety of biologic drugs (especially Humira, Remicade, Cimzia and other anti-TNF agents) we have to remember that they do have a huge impact on our immune system. So here are some Go-To's for being careful without freaking out: - Go to your regular blood test! - Visit the gyn/OB, dermatologist and your GI regularly. - In case of fever/infection or any other new symptoms visit a doctor immediately (preferably one who knows something about immunosuppression) - It's okay to take an antibiotic even when you wouldn't take one as a "healthy" person. Better safe than sorry. - Get checked for tuberculosis and hepatitis before starting treatment. - Pause the medication when you're sick (flu, fever...) and talk to your doctor.

(via Ulcerative Colitis vs Crohn’s Disease – Causes, Symptoms, Nursing Care, Treatment)

(via Ulcerative Colitis - Symptoms, Causes, Treatment & Surgery)