Good day to you, it is pretty funny writing down “2022” for the first or first few times each year…at least for me.
I wanted to take a moment and thank you for being a part of this website, this Ulcerative Colitis group/community/whatever you want to call it. As the years move along, some things remain, and for us UC’ers of the world, it is the reality that we are living with UC. Sometimes it is silent for a short while, and sometimes it is silent and in remission for a very long while. And as is the reality, sometimes is comes out to surprise the heck out of us and lets us know it is still there, and there are even times where it wants to take over everything. It is the reality. And, yes, we are all different in our own variations of this too.
But, on the very bright side, we do have eachother to learn from, and that can be a very powerful thing. I remember back in the dark days of late 2008 and most of 2009, I did not have too much knowledge of UC or IBD in general. I did have my uncle who was alive at the time and living with Crohn’s Disease for 30+ years. He was able to be there for me, and I very much appreciated every second talking with him on the phone. Often while I was sitting on the toilet’s seat. Oh man, just thinking of those days brings back strong memories. But for sure, what I remember the most was having someone I trusted to listen to and learn from. I didn’t always agree with everything he said or suggested, and actually, he did not suggest too many things to me. He mainly explained what techniques and mindset worked for him to get through tuff times.
My uncle eventually went on to have his colon removed and some of this short bowel. He had several operations overt he years. And once things were under control he lived 30 years of some darn good living. A better life I’d say than many people I know. For sure there were many people who he met later in life who never had a clue he was living with IBD.
So in this new year, I want to wish you all progress with managing your ulcerative colitis. This is something that goes forever for each of us, no matter if we have long periods of remission or the unfortunate “never-seems-to-end-flare”. (All flares do end…come one, we’ve been preaching that one for over a decade here…and it is true.).
If some one you are interested to know my current situation, I’ll try to give you a bit of an update. I am back to living in Prague, Czech Republic. Spent about 8 years of my life here now. My wife is from here, that’s the main reason I’m freezing my butt of once again in the middle of winter… I’m from California, but not sure when we will be returning there.
As for my UC, I do not take any medications to manage it. I have not taken any maintenance medications for it for over a decade now. I was diagnosed back in October of 2008, and went on to try asacol, colazol, sulfasalazine, Remicade, Humira before it was apparent that those medications were not controlling my ulcerative colitis. So, I ended up meeting a family friend’s daughter who also had UC. By luck perhaps, she introduced me to the SCD diet which she was using to treat her UC. She had been on all the medications I had tried with no success either, she also had tried 6MP. Anyways, things improved for me relatively slowly but surely. And after about 4-6 months I was on my way to a pretty nice sense of normal living. BUT…with a very different diet than before.
Fast forward over the next many years until the present day…I have had several flare ups along the way. The most recent was 2 years ago while travelling in Spain I ended up blown out of the water (or toilet bowl) with bloody everything and went to the hospital and ended up on Budesonide (a pretty interesting form of steroids). And… within a few days I was under control and off all steroids (without any side effects that were noticable…was great.). And here I am now.
As for my physical shape, I can safely say that I am able to do more pull-ups right now than any other point in my life. 5 sets of 10 is not a problem for me…even in the freezing morning weather here in Prague. As for food, I am no longer following any strict diet. I do eat breads and other non SCD items on a regular basis. I have VERY much limited my alcohol intake in the past 3 years. Maybe 1-2 drinks (usually beer) per month. Which for the Czech Republic…is probably a world record that I’m happy to own… And, I try to get as much natural sunlight on my body as possible. This is something that I wish more UC’ers tried and tested out on themselves. Even just 5-10 minutes a day, I think it is helpful, definitely lifts my mood too. Not always possible as the sun is a rare commodity here in this 50 degree north part of the world in the summer…but sometimes it comes out and when it does I try to capture it.
If you have UC, you have much more than my respect. You know what I’ve been through, you know also what so many other UC’ers have been through, and what future UC’ers will go through. That is not a prize, but in some strange crazy way, I think it is entry into this secret, special society non-UC’ers call UC. We are in this strange tribe together that others can only be outsiders to. Some are super knowledgeable outsiders, some have no clue. But that’s ok. We can educate them as best we like. And when the times get really hard, we can turn to eachother.
Best to you all, and I hope you have some fun, meet some new folks, and maybe start some new hobbies in this new year,
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
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