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,
( you can join my newsletter to receive some messages from me – join here )
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.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
Thank you for running this site for all of us so faithfully, Adam.
You are a wonderful person.
All the best to you and yours, now and forever!!
Thanks Bev:)))) you as well and you are always so so kind, happy new year to you and your fam!
And a very special New Year to you & yours
Adam. 10 years ago, as a frantic grandmother,
I called you regarding my grandson. You were
kind enough to speak to me and share some
tips on how to move forward to help my
grandson. The SCD diet was embraced after
many failed meds & biologics. Three years
of remission brought much relief and
a new life. You have been a constant
source of encouragement for me, as I’m
still reading about the ins & outs of
I truly loved your Holiday letter to your
many ( thousands?) readers… sounds like
you have it pretty much buttoned up…
God Bless and keep you and yours safe
in this very unusual time.
So nice of you Karen, I do remember communicating with you back in the dark ages, wow…ten years go by indeed. Best to your family and happy new year!
Dear Adam, just wanted to wish you all the best for a happy and healthy new year. Also wanted to say thanks for all you that you’ve done and continue to do. I found your site in November 2008 when my son, who was 14 at the time, was diagnosed with UC. I remember it being such a scary time for all of us. I can’t tell you how much I appreciated your blog, your videos and your e-books! You made me feel like we were not so alone, that we had someone on our team, helping us along and assuring us that somehow we’d get through this terrible time. And we did. My son is now 27 and doing very well.
Always remember what an inspiration you have been to so many here in this community. Thank you from the bottom of my heart.
Hey Nora, wow, what a nice message, so nice of you to write in. Very glad to hear he is doing well at the fine age of 27. (Oh how do I remember those days, was right before my diagnosis, but was some good times indeed. Glad he’s squared away now and on a roll. Best to you Nora
Thank you for the New Year’s message Adam. It sounds as though you are in good shape these days. God bless you. I broke my leg last May and had 2 surgeries 9 days apart. After my hospital stay, I was sent to a rehab/nursing facility and lived there for 4 long months. I must say that I was in remission the entire time I lived at the facility. I wasn’t even on my Mesalamine at first. I was released in September and had only a couple of minor problems since, but am back in remission! I am doing well with my UC, but not so well with the healing of my broken leg. Happy New Year to you, your wife and all UCers on this site. May it be a healthy new year for ALL of us!
I’m sorry to hear about the leg issues. Coincidentally, my very good friend (who I wish I could see more often Jeff…) fell from a tree and had all sorts of bone problems in one leg. Started about a year and a half ago, and multiple surgeries later, and much rehab, he is now on the long road to recovery, and doing better and better. Crazy as he was (and still is a construction worker, and super athletic guy, strong as an ox, ) in such great shape, but one stupid move on the weekend and his life changed. BUT…slow progress works for many, I hope for you too and that in this year you can get back on your feet as you remember. All is possible. Keep the head up Natalie. And thank you for sharing Adam
Your site is awesome! Your books r helpful! Your time and effort is appreciated.
Happy New Year Adam and I am happy to hear that you are doing well. I am I’m 72 years old and l was first diagnosed with UC after the birth of my Son in 1984. In the beginning of my pregnancy I had bleeding but I couldn’t have a colonoscopy until after he was born. I have had many flare ups over the years and have been in and out of remission but since the past 4 years I have been in complete remission and my Gastro Dr took me off my medication which was Apriso at the time. And this is huge because this is the first time in almost 38 years that I haven’t taken medication for UC. I am not on any special diet. I just made one simple change. I take fruits and vegetables and berries every day in capsule form…2 of each a day…it has changed my life!!!
Good Morning Adam,
Happy New Year to you! Thank you so much for being so transparent when sharing your UC story and journey. I joined your IHAVEUC Group in 2018. Your emails, newsletters and updates help me to not feel so different, so isolated and alienated from my family and the rest of the world.
I was diagnosed with Ulcerative Proctitis over 20 years ago which advanced to Moderately to Severe UC. In 2016, I went to an Alternative Medicine doctor that I took my entire UC Medical Record history to. She prescribed two type of Enzymes that i had immediate adverse reactions to. The Enzymes literally ate off the lining of my stomach. I was hospitalized for nines days. They had to start me on Remicade to save my life. Prior to this I had been on some of the same medications as you; Asacol, Colazol, Prednisone. Uceris, and Remicade were prescribed after the Enzymes incidents. Now they have scheduled me for my first Stelara infusion due to antibodies to the Remicade back in June 2020, and them not even bothering to tell until they were force to. My doctor knew that I had developed antibodies because the labs that he ordered showed that it. He just kept prescribing Remicade and even increased my dosage by 200mg. I had an adverse reaction had to be rushed to the Urgent Care. The increased dosage caused severe dehydration. I haven’t been able to travel for work since the adverse reaction.
I am in what seems like will be a never-ending flare for over six months now. The doctor that continued to dose me with an ineffective medication that didn’t treat my UC due the antibodies is now wanting me to trust his judgment for a new medication Stelara. But, I do not trust him. Every time I have ended up severely ill or hospitalized it is because I trusted and was adhering to my providers treatment protocols. How do I trust doctors that prescribe treatment regimens that harm me instead of help me.
I am at a crossroad. I want to be well, and live a fully healthy, joyful, peaceful, abundant and prosperous life. I am going to revisit the SCD diet. I started it some years back, but I didn’t continue it. I Pray that it is not too late for to turn this around.
With Immense Appreciation,
Hi Adam, Your eBook changed the direction of my sons life 8 years ago who was in a chronic state with UC. From your book, he went on to learn every natural remission strategy and now helps others with his company Crohns Colitis Lifestyle. You were so helpful on the phone as well and we can’t thank you enough for opening our eyes to the possibilities of healing! Happy 2022 Adam!!! PJ
Thank you, it would be lonely road without this website… Happy New year!
Hi Adam Thanks for your message. I wish you, your family and everyone else who has UC/ Crohn a better year filled with good health and prosperity. Also I would like to thank you for having this website to bring all of us together. This was a tool for me to learn from others and don’t feel alone. It is a site for knowledge sharing and support ( Since other people cannot understand our experience). All the best
“Happy 2022” to you and yours Adam. You are a very special, caring and awesome individual. As others have said before unless you have this pesky disease you just don’t “get it”! You were very brave to share your UC story some 10 years ago with other sufferers and continue to do so without seeking any recognition or financial reward. Also to offer your book as a complimentary gift if necessary I think says it all! I’d also like to say a big “thank you” to your lovely wife who has been with you from day one and supported you in your journey to help other UC folk from all around the world. Truly grateful and humbled to have hooked up with you and your website. Wishing you continued good health and lots of fun in the coming year.
Adam! Thank you so much for everything you do and especially for sharing this latest message!! I was supposed to go on Remicade a year ago. But I farted around and eventually, in early fall, dropped off the mesalamine I had been taking for 10 years instead. Lol. It was so expensive and I never believed it was helping me. I was just DONE with conventional treatments. I’m in remission now for the first time in 2.5 years!! So your story is very inspiring. I eat relatively clean, but not super strict. If there’s anything I’ve learned over the eleven years of my diagnosis—you gotta find what works for YOU. And knowing there’s an army of us out there is always helpful. Again, thank you and best wishes.
Thank you for your willingness to share and inspire…I too began my U C journey in 2008 (14 years ago) and have followed a similar path of medications and attempted treatments.
We UC’rs will forever be indebted to you, the toilet paper industry, and our doctors; (not necessarily in that order.)
One thing that has been abundantly clear: What helps or works for one
will not work for another, which is why this disease is so complicated and incredibly hard to treat.!
Not a respecter of age, gender,social status or wealth ( or lack thereof) this disease has proven to be a bit of an enigma and you and your website have been invaluable in providing hope and education in times when things looked particularly bleak and hopeless. It has also been quite a financial drain and your selflessness in offering freebies for those that need it is much APPRECIATED.
Stay well and free……. Best regards, DJ
Hi Adam, Thank you for this website. I was diagnosed in 2008 also. I reacted to Remicade in the hospital, was on Humira, but had topical reactions, probably because the sheath that was over the needle had latex, of which I am allergic to. I had some remission with Cymzia, but then Entyvio. Entyvio stopped because I had a sinus infection, that is still active after having sinus surgery 1 year ago. Now they want me to start Stelara, and Budesonide. I am going to try the Budesonide on its own first. I see that It worked for you. Were you on it for very long? What about side affects if any did you experience. I am also on
Cuvitru (gamma globulin) self administered infusions weekly, for my non existent immune function. I am 70 year old female. I had 2 Phizer covid shots
and blood work showed no antibodies. Had one full dose Moderna and had a bit of a reaction, had blood work, and have some antibodies, but was advised
not to get another shot, but to call if I test positive for covid, and they would get me a covid antibody infusion. Wondering if there are any weirdos like
me….Thanks for this platform. Wishing you a healthy 2022.
Hi Adam. Happy New Year to you and your wife.
Just like you I came off the medication and feel much better without it. I do still struggle but just keep on trying to manage it as best as.
Thank you for your webiste and always interesting to see how other people are coping with their UC.
All the best living in Prague.