It was a hard month for me, and I wasn’t able to write anything, and thinking straight in my past week’s. Side effects of my new drug got to me. In my previous post I explained about Crohn disease and beginning of my new treatment. I was really excited but also aware of the side effects that this drug can cause. I’m not gonna lie, of course there was also time for me to sit down and write, but I just couldn’t find any right words to put together that are going to have some sense. I needed some time to clear my head and to figure out how to proceed, and how to get rid off being scared of the further side effects.
First, I need to describe what my new medication is and what can happen.
Stelara (ustekinumab) is a biologic medication that is used to treat Crohn's disease. It is a type of immune system protein called a monoclonal antibody that works by blocking the action of certain immune system cells that are involved in inflammation. It is usually given as a subcutaneous injection under the skin every 8 weeks. It is typically used in people who have not responded to or cannot tolerate other medications for Crohn's disease. Just like me.
What is especially difficult for me is that the medicine and its use were presented to me in German language, don't get me wrong, I understand German, but it is still difficult to understand medical terms in a foreign language. After that, I had to translate everything into Slovenian and then search for information in English, because there is a lot more information.
What is important for me is to learn about side effects and how to cope with them. The most common symptoms may include injection site reactions, upper respiratory tract infections, and flu-like symptoms. More serious side effects are also possible, although they are rare.
I've experienced an immune system collapse as a result of a new drug treatment. This is known as immune suppression.This inhibit or alter the function of the immune system and it can make us more vulnerable to infections and other diseases.
As usual, I got almost all the most common symptoms. I haven't felt so drained of energy in a long time, I didn't move out of bed for almost two weeks, and I was still in pain from the surgery. Unfortunately, my personal doctor somehow didn't understand that I wasn't able to work, so she prescribed me pain pills and said it was time to go back to work. Fortunately, the painkillers helped, but I still had no energy and strength to work 12 hours a day with patients, nursing them and lifting them. I am very grateful to certain workers who helped me and took on difficult patients, but because we don't have enough workers, this was not always possible. But I was also afraid having an epileptic seizure, because of so much stress.
And then the Christmas came. I worked all 3 days (24th, 25th and 26th), and I was actually happy because I worked with really great colleagues, but of course not everything went according to plan. 3 colleagues went on sick leave and this meant that there would be a lot of work, as well we have to deal with visiting relatives. I was mentally and physically exhausted, and slept the whole day on my day off. At least that's what I thought. When I finally woke up, I had such a headache as I had never experienced in my life. Reason? I had a seizure. I'm not sure if it was caused by the medication or if my body simply couldn't handle the stress anymore, or maybe all together. But let's leave it at that, I feel better already. The medicine started to work and my bowels improved, although there are still minor side effects I can live with this as long as the medicine helps me.
To conclude this article with a few more tips. Starting a new treatment for a medical condition can be a challenging experience and after researching, I found some advice that may help me cope with the process:
Communicate with your healthcare team: Don't be afraid to ask any questions you have about the treatment and how it will affect you. It can also be helpful to discuss any concerns you have about the treatment and its potential side effects. I did that!
Educate yourself: Learning about your condition and treatment can help you feel more in control of your health. Always talk to your doctor, and do some research online (just make sure to use reliable sources). I did that too.
Take care of yourself: Make sure to get enough rest, eat a healthy diet, and stay hydrated. These simple steps can help you feel better overall and may help you better tolerate the treatment.
Find support: It can be helpful to connect with others who are also dealing with a similar condition. You can find support groups online or in your local community. I found mine.
Practice self-care: Take time for activities that bring you joy and help you relax, like exercise, hobbies, or spending time with loved ones. For me, yoga, dog and legos 🙂
We need to remember that every person is different, and what works for one person may not work for another. Finding what works best for us may take some trial and error. It takes time but it is necessary.
“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.”– Josh Shipp
So let the new year begin.
With love, @tinabrezpike ❤️
Hi @tinabrezpike. It was nice reading this health update from you and seeing that you are doing okay. It’s good that you educate yourself about the side effects beforehand to prepare. I’m glad to hear that you are feeling better now and that the medicine is helping.
It’s great that you shared those helpful tips at the end for others who may be going through similar experiences. There is a community called Daily Blog that you can post your updates in and keep us informed with how you’re doing. The OCD Community is mainly for general topics that do not fit in any of the other communities ;)
Thanks again for this update and I hope you continue feeling better ~ 💖
Thank u so much for your kind words ❤️ sometimes it's hard to decide in which community my article belongs, so I'm really grateful for your advice :)
You're welcome. Glad to help ~ 😉🌺
Here’s a helpful post about communities you can read ~
Dear @tinabrezpike,
Our previous proposal expired end of December and the Hivebuzz project is not funded anymore. May we ask you to review and support our new proposal (https://peakd.com/me/proposals/248)?
Thank you for your help!