I am very uncomfortable writing about this topic, but with who am I going to share these experiences if not with you?
Where to even begin? Maybe it's best to start at the beginning.
I was diagnosed with Crohn's disease 12 years ago. It was a considerable shock, somehow I was not ready for someone to tell me that at the age of 20 I have an incurable disease, or maybe should I say a chronic illness. I was already familiar with this illness because my brother was diagnosed with it at the age of 8. Since I was with him throughout his childhood, I knew exactly what was waiting for me. It scared me a lot because I knew what he went through and I didn't want that, but unfortunately, I had to prepare myself for everything that was going to await me. And so it began, it was necessary to stop the spread of inflammation. First, we did all the necessary research, including MRT, CT, colonoscopy, gastroscopy, and so on. Since I was still in the active phase, these tests made me very tired and I could barely function. I think I spent three hours a day on the toilet and that's why I lost almost 10 kg in one month. I had no appetite and I also drank very little because I knew exactly what was waiting for me after just one bite of food. Over the course of a year, we tried all possible pills for this illness, as well as a strict diet, but I think it only got worse. Then they decided to try Medrol, this drug is considered a lifesaver, but it is used only in emergency cases due to serious side effects, which are of course related to the dose and duration of taking the drug. I won't mention all the side effects I got, because the medicine really helped and put me in remission. Of course, this medicine is not for the long term, it is only taken for as long as it takes to stop the inflammation.
At this time, it was necessary to find a medicine that would help me in the long run. And so they decided to start with biological treatment. Even though they knew that didn't help my brother, they had hope that it would at least help me. They decided to start the treatment with Humira.
What is Humira anyway?
Humira is made by joining together DNA molecules. It is what’s known as a biologic. Typically, patients must have an inadequate response to conventional medications to be considered for biologics. More specifically Humira is a tumor necrosis factor-α blocker, or TNF blocker. The drug suppresses the immune system by blocking the activity of TNF. TNF is a protein produced naturally by the body’s immune system. Some people with certain autoimmune diseases produce too much TNF. With 10 approved uses and the potential for more on the way, Humira (adalimumab) has emerged as the best-selling drug in the world. But it’s not without a price. The medication can cost more than $50,000 a year per patient. For some 4,200 patients, it may have cost them their lives.
Source (https://www.drugwatch.com/humira/) Article by Emily Miller
Fortunately, we have health insurance in Slovenia, so we don't have to pay for medicines. When I researched what this medicine was and what side effects it caused, I didn't know what to do. Should I try the drug and risk all these side effects? Unfortunately, there was no other option.
The medicine is given every two weeks as a single subcutaneous injection. How am I supposed to inject this into myself?! I was scared like hell. I would never have done this on my own, but fortunately, my husband took care of it. The medicine helped, the condition really improved in three months and I was able to function normally again. That's why my husband and I decided to move to Austria and start our life together. The intention was that we would both find jobs within a month. This is how we somehow imagined the beginning of our lives in another country. Since I didn't speak German, I had to find a job where it was possible to communicate in English.
Unfortunately, our plans fell apart when the first side effects of the medicine started to show. On my skin appeared red, itchy, scaly patches. The worst was on my hands, my palms were covered with festering scabs so I had to wrap them and wear cotton gloves, so I could be at least able to use my hands a little. Because of this, I was unable to start with work. So, how to survive on one salary, in a country where I don't have insurance yet and I don't speak their language? Difficult. But with our combined efforts, we somehow managed to have at least enough money for food. However, soon things got even worse. The same things that I had on my hands started to appear on my scalp. At that time, I didn't know what will happen. But then I woke up one morning and there were chunks of hair on my pillow. I started to panic, what's going on?! I noticed scabs on my scalp. I was losing at least one strand of hair every day, it got to the point where I didn't even brush my hair anymore because I would just grab the scab and the hair would stay in my hand. I thought cutting my hair short would help and make it all go away. Unfortunately, that was not the case. Since I didn't have a job, I automatically didn't have health insurance. That's why I started thinking about how to cure it myself. But then I remembered all the articles I read about Humira and the side effects that can occur. So, I stopped taking the medicine. Unbelievably, after three weeks my condition on my body began to improve. But my hair was still falling out, so my husband suggested I shave off the remaining hair. I won't tell you what feelings surrounded me when my husband shaved my hair. I think you can imagine how I felt. And yes, I cried. To give me at least a little courage, he also shaved his hair. Fortunately, this helped. The wounds began to heal and my hair began to grow back. However, I felt very uncomfortable without my hair, so I wore headscarves and hats to hide my insecurities. But over time I got used to it and didn't pay attention to all the rude comments.
Over time, the situation improved, and I finally gained energy and was able to get a job. Half a year later, we celebrated the New Year, but unfortunately, that day my life turned upside down again. I woke up in a hospital with a hard headache and with a letter next to me from my husband. Apparently, I had an epileptic seizure and at the very bottom of the letter, it said that we were engaged. Unfortunately, I don't remember anything. I don't remember my own engagement. And again it was necessary to start anew. I had to learn all about epilepsy, what causes it and why I got it in the first place. We came to the conclusion that the previous medication probably triggered the seizures. For quite some time we searched for the right combination of medications that would stop the seizures. Over time, the seizures subsided and I was able to start treatment for Crohn's disease again. Doctors decided on a new biological drug - Entyvio.
It helped, but after a few months, the severe epileptic seizures started again. But now I was really desperate, it seems that the combination of drugs didn't work, so I stopped treating Crohn's disease and focused only on epilepsy. And luckily, for a year I didn't have any seizures. Unfortunately, during this period I ended up in the hospital several times because the intestinal inflammation was getting worse. But, we somehow managed to calm down the condition with antibiotics. Again, they started to discuss which drugs we could try, but I had enough. I just ran out of energy. I couldn't go on like this anymore. I said no more drugs. Let's try it my way. I was still in an active phase, but with a strict diet, I somehow managed to calm the situation down to the point that I didn't need to go to the toilet after every meal. Of course, during all this time, I was also looking for a natural way of treatment. I tried probiotics ( kefir, kombucha, kimchi...), prebiotics ( whole grains, bananas, artichokes, honey...), mindfulness and stress relief (but this is impossible with my kind of job), and cannabis and cannabidiol. And yes, the last one helped the most, not to the point of going into remission, but I could eat normally and sleep at night without waking up every hour. Unfortunately, the whole thing is illegal, so...I can't say anything more...
And why am I even writing about this topic again? Because the last two days in Madeira my condition got so bad that I got a fever, diarrhea, and hard abdominal pain. Somehow, I still managed to hide all this and "enjoy" the last two days of vacation. Of course, I had to go to the hospital where we tried cortisone. In two weeks, the situation improved to the point where I was able to end my sick leave and go to Amsterdam. Unfortunately, 3 weeks ago the situation worsened again. I had terrible abdominal and anal pain. I went to the doctor hoping that he would prescribe cortisone again and that I could go to work the next day. At least I thought so. After the examination, he immediately called another doctor to look at me. They found out that I had an abscess, and that they had to immediately perform a surgical operation. So I stayed in the hospital again.
Oh, what pain is this, I can't move, sit or even lie down, but the situation will improve after a few days, although I will have to spend quite a while on sick leave. I went to the gastroenterologist on Friday to discuss how to proceed with the treatment for Crohn's disease. I think we talked for almost an hour and we came to the conclusion that at this point I have no other option but to try another biologic again, this time with Stelara. During this time, we will carry out all possible tests and then they will be able to decide if an operation is possible, to cut out the inflamed part of my intestine. Of course, I will have to continue with the biologic if there won't be any severe side effects. ( Until now, they didn't want to perform an operation due to severe epileptic seizures, but now it will probably be possible.)
And one more time. I've tried tons of medications as well as natural treatments and yes it helped for a while but not for long. Of course, I will continue with the diet and certain natural treatments, and I sincerely hope that I will finally be able to get into remission.
Due to epilepsy, I still have auras, déjà vu, and absence seizures now and then, but luckily for some time now there was no grand mal seizures. I only hope that the seizures will not get worse with the new treatment.
I am afraid of how the treatment will go, but I really have no other option.
With positive energy and my hobbies, I can at least a little forget about it. My family, my friends, and my plans for the future give me the strength to overcome all this and finally live a normal life.
“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
from this
to this
With love, @tinabrezpike ❤️
All three of my children were diagnosed with Crohn's, and two of them have very similar stories to yours and have been through the same biologics you mentioned. For one of my now adult children, nothing worked except FMT which can be done, for free, at home. It is very easy to do. I highly recommend this treatment for Crohn's. Diet matters 100%. Look into the GAPS diet.
The third one to be diagnosed was 20 years old at her diagnosis. By then we well understood the dangers of the medications, and the importance of diet, so she went straight to the GAPS diet and has had no problems for 12 years now. I also highly recommend this diet! It's not easy, but it's not as hard as being as sick as you have been. It sounds awful.
I can't imagine how you felt when all your kids got the same disease. I don't think there is anything worse than a mother watching the pain of her children. My mother always looked strong, but I still saw her suffering because she couldn't do anything. My brother is 26 and has a stoma. It took him a long time to come to terms with it, but now he can finally live a normal life. I looked at the diet you sent me and thank you, but I have been avoiding meat products for quite some time, especially animal fat. I eat chicken meat, but in smaller quantities. We'll see what the future brings. Greetings to you and your children, I wish you all the best. ❤️
Hey what's up! Thanks for sharing your story! You're a very strong minded individual, truly amazed by your resilience...
Crohn disease is in the family as my sister was diagnosed with it 20 years ago, she lives a happy life now but we nearly lost her a few years ago it was a traumatic experience for everyone, so even if I haven't lived through it, I am also affected by it, my bowels and digestive system are sometimes very sensitive so I always stay mindful to my nervous levels as it gets triggered by stress, as I am sure you are aware. I also pay attention to my kids, especially my 2 daughters as it's more common for women to be diagnosed and it's hereditary apparently so they probably have the gene.
My sister doesn't take any medication anymore, but she had a surgery (I don't know how comfortable she would be about me talking about it here), and rarely use her médecine when she gets an episode.
Yeah, cannabis is the best, 🤌 I also was looking into a worm therapy I am going to share the link here just in case you haven't heard of it : https://academic.oup.com/ecco-jcc/article/11/4/387/2996702
Short hair suits you 👍!
Cheers guys!
Thank u so much for your kind words❤️ it's hard sometimes to explain what this is because it's uncomfortable to talk about this disease and explain to people why I go to the toilet so much when I'm visiting someone. I really hope that this treatment will help and that they will be able to perform the surgery. And I have already heard about this therapy with worms, but in Europe it is not confirmed by medicine and I think it is not in America either, it will probably take some time. I looked a lot about stem cell therapy, but unfortunately it is not approved either, this therapy is only performed in Colombia at the moment, but it is not cheap. We'll see what the future brings.😊
I'm glad your sister is alright now, girls are strong and we can overcome this :)
Thanks for your reply, take care!
💪
Some people can be very cruel when making unwanted comments (especially without knowing all the facts about your illness). You have a lovely smile ~ Just keep smiling 🤗
Thank you, I had a seizure and broke my teeth, and now I have new ones so I smile all the time :)) 😊 Yeah apparently I supported Nazism, but people don't know what they talking about and I don't care, I don't have time for this :)
I broke two of my front teeth years ago playing Tennis! Somehow I managed to hit them with my Tennis racket. Got them both capped, it was not a pleasant experience !LOL
So keep SMILING 😎 and you sound so inspiring to others 🤗
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I have permanent pain and cannot trust official medicine anymore.
All the best to you
Thank u ❤️I understand you, I've also given up on doctors so many times, but in the moment there's no other option for me, so I need to try this therapy and then we'll see what happens.
Ohhh my world I was really touched by this experience how can life be this difficult, honestly am teary at this moment, from one illness to another.
I don't know if I should say I understand because I have never been in such situation but I can assure you that positivity is the key, do not give up, you will be fine I assure you that, my prayers are on your behalf.
But in all you are still a beautiful woman❤️
Thank u so much for your kind words ❤️ And no, I won't give up. So many people suffer from various diseases and when I see how strong they are, it gives me extra energy.
Me I have been suffering from endometriosis and the pains are somethings unbearable but I still don't give up because I believe that one day everything will be alright , never give up
Praying for your fast recovery on every treatment or side effect you're encountering. Having an untreatable illness makes us weak and pessimistic sometimes. But you showed us the other way. Still optimistic in life. That's one thing that makes me believe you'll surely fight that sickness.
Thank u so much, such comment means a lot ❤️
Wow! First let me say you are beautiful. Even in those photos where you were dealing self consciously with your hair, you were still beautiful. 🤗
Thank you for boldly and bravely sharing about your illness and the journey you have traveled. I was so glad to hear about the family you have surrounding you that have helped and supported you. Continue this fight and keep that hope alive. As I was reading this post I could sense the fire and determination in you.
It’s amazing you have also tried natural remedies as well because those can give your body a break from all of the chemicals from those treatments. I’m sure it has helped be a good balance for your body.
I am praying for your strength, mental health and that you will finally get into remission. This was so inspiring to read how you didn’t give up even on your worst days. I truly thank you for sharing.
It might be a good idea to keep an eye out on the Med-Hive Community where others share their stories as well as medical personnel share about treatments etc. dealing with illnesses and diseases. You may even be more comfortable sharing there about your journey. 😊
Take care and I hope for many blessings of health your way ~ 💗
Thank u so much for this, it means a lot ❤️ I'm still fighting and always will, but maybe also because I don't want to accept this fact. I know there is life without pain and a normal life without constantly worrying.Treating now and looking at the future where I have life without illness, and this kind of future is not dreaming, this will be reality :) and thank you for your advice ❤️
You’re truly welcome. I’m so glad I ran into your post.
Love this statement!! Good for you!! 💓
I'm very sorry to read what you're going through and whatever I say, won't make you get better. However, hats off for what a fighter you are!
This is very important and always helps, no matter how difficult the situation is. I'm sending positive energy and wishing you all the bets in the world. Never give up!
Thank u very much for your kind words ❤️ And I can’t give up, who will take care of my husband, someone needs to wash his clothes ☺️☺️ But really, kind words always give me more strength, and now I'm glad that I share this here. This support, oh…it means a lot ❤️
I wish you all the best! And don't forget, it doesn't matter if you get knocked down, what matters is that you get up!
Thank u so much ❤️ And yeah, I’m still standing, always will 😊
I know!💚
Never stop taking the cannabis!
I didn’t, because of it it’s possible for me to eat and sleep, it’s hard because of restrictions, but I told my doctor and he supports this, and this is not bad 😊
Hey, I'm really sorry this is happening to you and I really hope you get well soon. I was wondering if you have ever tried Carnivore to battle your Crohn's disease. There are a lot of people who have successfully put it into remission by going Carnivore. It also helps for epilepsy.
For instance - https://carnivore.diet/galen-healed-crohns-disease-chronic-fatigue-carnivore-diet/
And as far as epilepsy is concerned:
https://carnivore.diet/category/success-stories/epilepsy/
If you have any questions - feel free to ask. I've been 100% Carnivore for years.
I really hope they find a way to stabilize the health situation. Much encouragement to you.