autoimmune hepatitis

Autoimmune hepatitis (in English)

Hi guys! It’s been a really long time since my last post. I was very tired because of school last spring and had to prioritize. Ever since I started my blog, I meant to write this post. But since it’s such a long story I postponed it and felt I can’t find the right words.

I have been diagnosed with autoimmune hepatitis a few years ago. Back then, one of the first things I did was to google it and trying to find information and others who have it and their experiences. There was very little to be found back then. Also, because it is a rare disease, I’d like to raise awareness of it. Autoimmune hepatitis is not contagious, it is just like other autoimmune diseases. But in this one, the damage happens in the liver.

What happened?

First time I got symptoms was in 2008, six months after gave birth to my first child. I suffered from PPD, and had started working out quite hard and didn’t eat well, I had had thyroid problems (I didn’t understand that back then though!). I was suddenly incredibly tired; I could hardly get up from the sofa, change diapers, walk the dog. I was in a thick fog all the time. I went to check my hemoglobin, which was ok. Then my pee went all dark yellow, so did my eyes. Then my baby’s aunt told me my skin is all yellow too. I went to the hospital.

They took more tests, and my liver test results were bad. They said I’d have to stay there, but since I was still breastfeeding, they let me go home for the night. I came back in the morning to see the doctor. She said my condition was serious and I should be medicated with cortisone. She didn’t want to hesitate and start the medication immediately, because it is difficult to get rid of cortisone. Instead, she said I should sleep and rest all the time, stop breastfeeding (I barely had any milk left anyway and my daughter already ate solids), I should drink lots of water too, and take care that my digestion started working. I came back every morning for blood tests and to meet the doctor. The liver tests quickly showed improvement, and in a month they were very close to normal. Without any medication, I was healed. I was completely healthy the next four years.

Please notice that this is a story of my personal experiences. Everyone is different and our bodies are unique and react in their unique ways. Do not stop taking your medication based on this story.

In 2011 I gave birth to my son. Few months later I was diagnosed with hypothyroidism and a couple months later I got old autoimmune hepatitis symptoms and got into hospital. This time around, doctor ordered heavy cortisone medication and I had to stay in hospital for about 10 days. I was away from my children for three weeks. My son was only 8 months and my daughter 4,5 years. The hepatitis situation didn’t get better as fast as in 2008. Prednisone made me bloat all around, I was very moody and and didn’t feel like myself physically or mentally.

Cortisone and side effects

I have been a kid of a difficult patient since my body responds slowly to medication, or the drugs just cause so severe side effects that they can’t be used. Prednisone in bigger doses (over 20mg) caused me bad mental symptoms. It had to be replaced with Entocort (budesonide), which at first didn’t give me side effects. Prednisone tames the inflammation, but side effects are very common. I got all of them; bloating (all over my body), moon face, acne, increased hair growth around the body but the hair on your head falls off, fatigue, insomnia, moodiness (from euphoria to rage), sweating, strong sense of hunger, problems with digestion, joint pain, losing muscular strength, decreased eyesight, lowered voice.. I am not sure if this was all. And my body became dependent of cortisone. I felt like I had lost myself. I understand why my doctor took the risk and didn’t start the medication in 2008.

A couple years after I got sick, I got a job. At that time my condition had gone worse after a good period. I had recently lost 8 kg (~16lbs), started exercising and felt good with lower doses. But now I was back with heavy doses of Prednisone and time at home with my son was over. It was cool, exciting, emotional and very stressful. It didn’t go well. I was a mess because of the medication, and it was scary to tell about it to my boss. The spring 2014 is probably the worst time of my life; I struggled through the days at work, came home and poured everything on my kids and my man. I waited for Friday and I was so angry and tired, yelled at my kids and was very mean to my man. Then I cried on Sundays because I didn’t think I could go through another week. It was maybe in April when I talked in phone with my doctor and finally told him I thought I am losing my mind. They immediately said it might be the Prednisone and I asked for psychiatric help.

I got to see a psychiatrist and she was just wonderful taking the weight from my shoulders telling me it is the medication that doesn’t suit me and I should have come earlier, when I got sick in the first place. She wrote me a sick leave. I got regular appointments -though this wonderful doctor left to work in another place after that summer – but I saw a psychiatric nurse every week. My medication got changed to much pricier one, but at least I didn’t feel batshit crazy anymore. I met her for a year and a half, and after my therapy ended, they said I can come back later if my condition gets worse.

2017

My current medication has kept the remission on for about 6 months, so we can’t talk about long-term results yet with these doses. I don’t stress as much as I did before, but I am very sensitive to the all the signs of my body, that could be symptoms of hepatitis. So it is quite hard psychically. Also sometimes I feel like a loser or a difficult person for having AIH, tired of having to explain why I don’t drink alcohol or can’t stay in the sunlight (side effects of one med is skin being sensitive to UV rays and increased risk of melanoma), I catch cold easily and my skin has thinned a lot and I bruise very easily. So I don’t feel that good about wearing skirts or shorts either..

BUT I do feel very good at the moment! Being able to do something I love every day (art school), makes me feel so happy and that my days are filled with meaning. I’m going to see my doctor in a couple weeks, it is always very exciting. My liver is still 100% undamaged, so the medication is what’s affected my body the most. I think having AIH has made me appreciate life more, and made me realise nothing can be taken for granted.

Things and advice I heard/wish I had heard when I got diagnosed

– It’s possible that you can live a very normal life even though you have autoimmune hepatitis. There are as many experiences as there are patients. I don’t think it’s wrong to believe it all goes well.
– If you get mental side effects from cortisone, tell your doctor! Don’t try to cope on your own, ask help.
– Learn to listen to your body, you pretty certainly need more rest and stressless life than a healthy person. Make sure you have a chance to go somewhere quiet and calm (preferably nature) whenever you need to.
– Cortisone makes you bloat and your joints stiff and muscles feel weak. Take walks, stretch, do yoga. Even though it feels hard, keep moving your body.
– Avoid sugar and wheat, they make you bloat much more than salt.
– Cortisone makes you want to eat everything. Buy fruit and veggies so you won’t be eating just bread and shit. Eat real food.
– Mind your posture and learn to breathe deep. You got this.
– You are not alone.

Posted by Emma in Posts in English, Terveys, Yleinen, 0 comments