Hi! My name is Zuzka(sinespace username Heelleen) . I am 30 years old and - I have Crohn's Disease.
This is my story.
- in 2011 i started feel very bad, i lost 20 kg, had several stoma pain, muscle pain , blood in stool, very tired. My family was scared i have cancer so they sent me to the hospital to see whats going on.
In one year after so many examinations they confirmed i have IBD(If you don't know what Crohn's disease is, it is an inflammatory bowel disease that does not have a cure.) in at the wrong state. I ended school because i was in very bad condition.They started giving me a lot medications(prednison,iron,salofalk,pentasa, immunit) but all failed. I was very scared and started be very sick - 41 kg! So finally in 2015 they took me to the hospital for surgery to remove half of my large intestine, some of small too and i had appendicitis too. You can see some my personal photos.
I cannot eat or drink, move or walk. That was the hardest time of my live.
Well, after times go, in 5 months my doctor found out my IBD is in relaps(which means croh is active again after short time!) He was very curious why and we made complex examinations, which shows i have very aggressive Crohs disease. That means, i have relapses very often and surgery are possible very often.
1.Started to take HUMIRA pens biological treatment, ended in 6 months because of alergic reaction on my skin.
2.Started to take REMICADE infusion, ended in 1 year because my body made antibodies and it doesnt help me anymore.
3.Joined in foreign studies injection every 2 weeks by myself, i needed daily fill electronic diary about my body reactions, ended in 1,5 years because they stopped work.
4.Joined another tablets foreign injections, this one was pretty well i had in 2 years but again, stopped work in may 2020.
From may 2020 to december i was in really hard relaps.
5.Started take new biological treatment called STELARA /december2020/ for now. Exactly, we are ending it because it shows it doesnt help me. We talking about ENTYVIO as last options...please, pray for me. I dont wanna go for surgery and had ileostomy bag...
Now, after all this years, i have several health problems - my teeth need repair all!!/they broke in 2 years and need fixed, which cost a lot money/
- my hair falling down, i cut alone for short...
- my joints hurt when i stand, so i buy some collagen and vitamins for myself.
- i have intolerance lactoce and residue - free diet for ever, which cost more money too
Everytime i have relaps i stay home long, i cant go to the work and pay bills. I drove 100 +km for my doctor for injections and colonoscopy.
Please help me smile again and have a little bit easier life after all i have. Everything will help me to have better days again like before..I need to be strong and dont give up.
In my free time i love creating 3D mesh stuff for SineSpace friends. This helps me a little bit to forget about all bad things. I wanna be a pro creator and helps another creators to grow ♥ Thank you for support !
With all LOVE ♥ Zuzka