My story with Crohn´s

May 24, 2020

This week on 19th of May 2020 was world IBD day. IBD means Inflammatory Bowel Disease, two main forms of these diseases are Crohn's Disease and Ulcerative Colitis. Few weeks back I saw in Crohn´s and Colotis Finnish organizations Facebook page a question for users to share their stories how this disease had affected on their work. It really got me thinking, how this has really effected me and my work. And I though I will share my story for you all. Hoping this will raise awareness about the disease, 4 years ago even I didn't have any clue what this is. And sometimes I feel it's hard to understand this disease because it is invisible to see outside. 

 

I got diagnosed 4 years ago, just before I was planing to flight to Edinburgh 2016. Getting the diagnose was scary but also a relief. Knowing finally that there was something wrong. After years going to doctors, there were moment I felt am I going crazy and is this all just in my head. Two years before the diagnose I started to get more stomach pain and just felt my stomach was some moments really sensitive to everything, some days I felt I was living in the toilet most of the day. I remember moment of just lying in the floor of my studios and wishing this pain would end and I would get my energy back. I was always afraid to eat, never knew what was okay to eat and what not. Because some days I could eat anything and other days my stomach reacted to everything. So sometimes I went long times not eating enough compare to how much I was exercising and then got more pain in the evening. Being at work was getting harder and harder, I felt some moments I didn't have any energy. I have always been good to just focus on my work and not letting showing the pain I was going through. I went many times to see a doctor and told them I have tried so many different things from diets to everything that I just found from my research. Nothing was helping and I just felt something was not right. But two years they only said I am stressed and that is causing it, try to take it easier... Helpful right. Final moment to myself was when I was teaching Aerial Yoga class and was on balance pose up in the air, I started to feel really weak and felt I will faint soon. Luckily it passed and I could finish the class, but after that I had enough. I can't continue like this. Last time when I went to see the doctor I fall into tiers and had totally melt down, begging them to make more tests. I had really powerful feeling everything is not right. I think on that moment the doctor was looking me and thought this woman needs help and finally got in for more tests. Which lead then beginning of the year 2016 getting the diagnose for Crohn´s disease. From that moment on started the journey of getting use to this new lifestyle in a new country as well.

 

There are different categories with the Crohn´s and they goes mostly which part or parts of the gut are most affected. More information on different categories you can find on those webpages I have included there below this post. Please read more there, both in UK and FI page had great information. Mine is in small bowel and I was lucky to find straight away a medicine that worked for me and it has been good until beginning of this year. On my good days I even forget for a while that I have it and feel so free. Because mostly my life goes around this desease, I need to plan ahead a lot with meals and my schedule to avoid any bad days. So sometimes thinking of food, what I can eat and what I can't, that gets really tiring. But when it flares up, I have learned to manage to still do work. Only few occasion I have had to call work that is not going to happen today. But of course working as a self-employed artist, getting sick days means now pay.
 I have learned these last years to live with it and learned more what works for me and what doesn't. I have tried many thing what are recommended for people what have Crohn´s, you can't just put us all in one box and so everyones needs are also different. I have felt I have found my new normal.

 

For myself admitting that I have something that makes me different and that is sometimes challenging my life, it is hard to say aloud. This is really first time I am open about this in public and it feels scary. But I hope through my story people would learn more about this. This lockdown has raised me another challenges, learning to live again in a new lifestyle with this disease. I have had issues beginning of this year and before lockdown I have been in the middle of tests to find out do we need to chance the medication or what, because I started to have really bad rash. And more bad days... So now that we live in this pandemic period all the tests are now postponed. When I have bad days the stomach pain is really bad and I am running to the toilet all the time and sometimes even for no reason, but just having that feeling. If you have ever had stomach bug, that's what my life is sometimes on the bad days. Now again I am waiting to get. more tests done and find out do we need to chance the medication or not. Feels almost like that time 4 years ago, when I was waiting to get tested in a first place. 

 

So now thinking about my work and this disease. Of course it's a lot in my mind would this stop me doing my current work? Definitely I need to think a lot on different opportunities in work field and keep everyone informed in my work places. Personally I just feel it's not easy to talk about this, because it makes me feel there is something wrong with me and people might look me differently. I know that is mostly also in my head. But of course sometimes I wonder if people know I have this, is it going to make them think twice do they ask me to work more or give me a new opportunity. 

 

Of course more in my own field in dancing, I have started to think what work I can do and perhaps can't. I can´t just suddenly go some other country, before leaving I need to find out how to keep control of my monthly blood tests and getting medication. I haven't let me stop traveling, which I was first really afraid of. But through many travels now in different countries as well I have learned what I need to keep in mind and make the research for the nearest hospitals and find out where to get help if needed. I just need to always think that I can keep in control my treatments where ever I go. But mostly I started more to think about the work environment, is it not a good environment to work for various reasons. 

 

Now in lockdown the dance and movement has definitely helped. So thinking about work and Crohn´s, yes it is affecting my choices how and where I work, but also my work is helping me to stay well. Channelling my creativity in different ways is helping me. Work places where I have started to be talking about my condition, they have taken it well and being really supporting. Which is really great thing!  

 

Living now in lockdown and shielding at home I have had to learn again different way of living whit this all. Not going outside and not really seeing anyone. Definitely it´s not easy! But again looking at my work, how can I still continue working from home and different ways, that keeps me going. Gives me something else to think about. My days are still really planed around when to eat and what. Learning cope on the harder days, how to also manage work. It has brought to me a new challenges and just trying out different things again in this new lifestyle what works for me or not. Just being again prepared for anything. 

 

This week I went to first blood tests and that was also a first time out in a really long time! Which felt crazy.... Government has ordered us in risk group to stay indoors all times and avoid any physical contacts. For myself I take this really seriously, my blood levels haven't been the whole year that good. So for myself getting the virus the consequences could be really bad!! Keeping myself safe and not have another patient for NHS to take care of, the best choice is to stay indoors. My medication affects on my immune system, so now even getting normal flu is really easy to get. I don't really wanna think what this new virus can do and I don't want to find out. 

 

So walking outside I felt enormous joy! I went to this park which on my way and felt I needed to dance. So I filmed the new Social Distance diary #4 Transition. You can see it from here (also below this post). I would like to take more walks outside, but the reality is that there are always people out there and not many people seem to care about the social distancing. I was only one waring mask and everyone who passed me came really close. Perhaps I just had bad luck or people are more easing up with this lockdown. Don't know, but I was really lucky to be in that park alone for that moment. But of course this all makes me think, as long as that virus is spreading as long we all will be in risk to get it. Of course us all the future is still unknown, when we start getting back to new normal. And when that will be also for people in shielding here in UK. Perhaps one day I get out more, which I truly hope so. I am not loosing hope. What I know is that dancing, doing my work and being contact with lovely people, that keeps me going. And I hope through my work I can keep others going forward as well. 

 

So this is my story living and working with Crohn´s. If you feel you might have any symptoms, go to see a doctor when you can. Don't be alone with it. Find out more about these websites as well. If you have any questions or want to share your thoughts, please just get in contact. 

 

Keep Exercising, Dancing, Moving, Laughing! 

 

Enjoy the good things in your days, no matter how small they might be take the positive energy from them! 

 

 

Finnish website: https://crohnjacolitis.fi

 

UK website: https://www.crohnsandcolitis.org.uk/about-crohns-and-colitis