What is Up…!!!!???
Today, October 2nd, TEN short (sometimes long) years ago, I was getting a ride down to the Stanford Colonoscopy Center, not sure what the heck was going on with my bloody poop attacks.
Ten years ago today, I also had an few tubes plugged into my arm, to shoot in some medication to put me asleep for the very first ever anal violation (full colonoscopy) of my life.
And of course, it was ten years ago today that in the waiting room, the gastroenterologist (Dr. Harvey Young) told me and my family who was there next to me that yes, as he suspected, I had Ulcerative Colitis.
Yup, it is true, October 2, 2008 was the day some things changed.
As many of you with this crazy gift called UC know far too well, there were all sorts of ups and downs the first year, medications galore, more anal violations, sigmoidoscopies, blood tests all around and far too often(for my liking as I HATE needles going in me), and life seemed like there was absofriginlootely no way it would ever be “normal” again.
I admit, yes, those thoughts were dancing all over me, inside me, in the toilet bowl that was way too redish back in those days.
But that was ten years ago.
A whole bunch has changed, And
the reality is that a whole bunch has remained the same.
- OK, I got some serious grey hair coming in.
- I’ve traveled to about 15 more countries than ten years ago
- I moved back to Europe from California
- Learned to speak a Slavic language
- I started a totally new diet (about 9 years ago)
- I followed this diet for about 6-7 years religously
- I stopped following this diet about 2ish years ago
- Now I don’t really follow any diet, and I eat pretty much whatever I want
- I was in Thailand and Hong Kong earlier this year chowing on rice nearly every friggin day…(did have rice for 6-7 years previously….as an example)
- I’ve begun to get seriously more active physically
- I’m willing to bet that right now today, I am in the very best shape of my life
- OK….I can’t bench press 255 pounds like I once would at the age of 25, but….I did just complete yet another long range bike trip…check out the video…and for the whole summer, I tacked on another 2,000 kilometers that’s about 1,242 MILES on my bike which included about 40 extra pounds of gear I was lugging around….Not bad eh…!!?:))
- I’m willing to bet that right now today, I am in the very best shape of my life
So what the heck am I trying to say?
As the founder and dude who started this website back in the year 2009…I didn’t think I would be feeling in this kind of physical shape after 10 years with ulcerative colitis.
I thought I would be doing OK, but not peaking out and feeling really good. Didn’t think I would be getting good sleep at night on a regular basis. Didn’t think I would be going months and months without those nasty joint pains I remember all too well.
And sure didn’t think i would be going for long periods of time with nice hard poops or very slightly not super hard…but good ones….(I’m talking about the ones where you don’t use much toilet paper…cause its just not needed…you know them, or at least you can remember them. They are good…especially when you are in a nasty bathroom in Volovets, Ukraine…and you’ve just banged out another ripping day cruising through back country trails off road in the Carpathian Mountains, and all you want is to just drop a nice #2…
Another thing, I don’t take any medications for my UC, and I definitely don’t plan to in the near or maybe infinite future. I had a colonoscopy last December, by Dr. Harvey Young, the same doc who diagnosed me, and he was shocked with how things were looking down there…that was cool.
How about You
- Are you newly diagnosed?
- Does life seem absolutely wacked out right now?
- Total curve ball getting this UC thing, right?
- All was going so good too i bet
- Does life seem absolutely wacked out right now?
- Or has it been a few months, perhaps a few years with UC?
- And things still don’t seem to be heading in the right direction?
- or are things starting to come around, and you are finding ways to manage your UC?
- How about the doctor you see?
- I hope you like your doctor, and trust her/him
- You have seen a gastroenterologist i hope
- If you don’t trust your doctor, have you considered changing docs?
- Have you ever met another person with a “life long disease”?
- Way cool if you have…there are many folks out there in this boat…maybe not just UC…but come on…there are many “auto-immune” disease on this planet right..?
- From my perspective, if you can have the opportunity to meet another UC’er….that’s pretty cool. I’ve met some now in several countries and it is always an awesome experience. (We’ve got a pretty awesome/exclusive secret tribe eh..)
- And what about your outlook on life?
- Do you feel constantly defeated?
- Are you hopeful for being able to accomplish some/all of your dreams somewhere down the road?
- Are you depressed(hey…I’ve been there…i’m pretty sure anybody on this planet has depressed times at some points in their lives. It’s part of living. At least it has been for me. (Life is TOUGH) For many))
- And let us NOT FORGET about a MAJOR thing here…. — RELATIONSHIPS with others
- How are those going?
- Do you have people you trust in your life?
- People you can talk openly about, especially about how you are feeling with your disease at any point in time…
- Do you have at least one person who really takes the time to try and understand how you feel? Understand your struggles with the daily difficulties that UC can often present?
- it’s really important to have someone, or maybe a few people you can rap about these struggles with
- perhaps it is a neighbor, teacher, family member, etc….
- AND what do I think is SUPER KEY…MAYBE MORE important than anything I have mentioned so far….
The Stress Factors of Life
Stress is nasty. It is semi abstract/hard to think about/describe, but I personally believe it plays a much much larger role in our disease than it receives credit for. Doctors and researchers do know that stress activates the immune response system. And this, I think is safe to say NOT what people with UC want to be doing. Come on…nobody wants to be doing this unless a lion is chasing you through the jungle and you need that extra dose of hormones/cortisol/adrenaline etc…
So…no silver bullet here. no easy solution. But minimizing/eliminating stress can play a HUGE role in your success with overcoming the disease of ulcerative colitis.
I would start with looking at your personal relationships. Perhaps there are some people in your life that really have a tendency to bring stress to you. (And I’m guessing none of that is even intentional.) But, let us all be real, some people are stressful to be around. Realize it. It might help you out. It might help you get that hard poop too.
I wish each of you the very best, no matter how you are treating/managing your UC, and no matter which country, village, city, or neighborhood you are from. We are all in this together, we always have been, and that is not going to change.
Have a great day, below are some pictures and videos of me the past two months.
For the record, I biked two bike trips. One was July-August, the other was all in September. First was from Slovakia to Hungary to Romania to Ukraine. Second was from Czech Republic to Poland to Ukraine to Hungary to Slovakia. Was fun. First trip with my buddy who is from the country of Georgia. Second trip I did alone. (I had not been on a bike trip like this since the summer of 2007 which was before my diagnosis.)
You all rock in my book,
(personal request, if anybody wants to do a skype interview, and talk about your UC and how you are managing it, please email me and we can setup a time. I’d like to publish some videos of us talking(webcam style) so others can see how we do it!)
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.
Hey love the story and wish to do something very similar myself tbh! But what did you do man? How exactly did you fix yourself?
To answer your question, there’s no real quick answer. And I can’t say from a medical or conclusive side “what exactly” I did/have done.
But, I think that the multiple years of reducing many things from my diet (breads/grains/most dairy/ many sugars) and more or less being on a meat plus veggies and fruits type of diet was probably the biggest change from a diet perspective.
And on top of that, trying to find ways to reduce stress from my life as well was key. A few times this included taking a good look at the “job/work” I was doing and realizing that the sometimes hard core stress that was involved was simply not worth it to my health. And leaving a few jobs became the reality for me.
I hope this helps to give you some ideas. (Additional reading on the hundreds of stories I have posted over the years will give you as well more perspective into what I have done along the way, there’s hundreds and most likely thousands of hours I’ve put into the website and often personal stories about myself, so you can check those out here:
Best of luck to you no matter how you decide to move forward,
What an amazing story! I’ve had UC for over twenty years now and it’s a constant up and down spiral. Some cycles I go through great with no flares while others throw me down for a few months. I do see that diet and definitely stress levels play a role in maintenance/remission of this disease. I struggle with anxiety from this condition and am working on getting it under control. Thank you for sharing your adventures.:)
Thx Beth for your message and comment, and you are not alone, I too have anxiety from time to time. It has been hard to pin it down as to when and where, but again, you’re not alone on that, and many upon many others here have reported similar types of things.
Best to you!!
So happy for you Adam.
Thankyou for your inspiration and positivity in the midst of the good and the bad.
And so glad I found you on the web during my dark time of diagnosis back in 2016.
In remission since September 2016.
I have coincidentally one very close friend who had had his colon removed 8 years ago from UC. He is super well now.
As you say it’s a secret tribe ( if weird) but support support support
Taking stress on in the face, being kind to ourselves when the hard times come, exploring all avenues beyond medication, butcwith the support of the medication when needed.
May all be well, may all be happy , may all be free from suffering.
Keep on Adam keep on
Ps. Error correction:Remission since September 2017
You are amazing and I’m so so happy your UC is in remission and you are living a beautiful life. You personally encouraged me awhile back when I was feeling so overwhelmed with this life sucking disease. Well, I’m still reading your blog, still feeling encouragement and still hoping to one day get in remission, too. So a big thank you and congratulations again.
All the best to you in the future! (and all of us ;-)
Thanks a lot.
So great to hear you’re dong well and even better to know there is hope of getting better for all of us. So my question is this: If you’re not on any medication and you don’t follow a particular regimen of a diet, then how DID you get better ? Was is just by itself, random, spontaneous, or was it simply given time that you “healed” yourself ?
Hi Adam, I too have followed you for the past two years. We live in Palo Alto and my son was diagnosed at 19. He was doing great with Remicade, but built up antibodies. He just started Entyvio. He’s in the loading phase. Not sure this is how we want to go. I’m wondering if his UC can be managed with Lialda alone. I don’t want to add any of the other drugs. All of it is frightening. He doesn’t want to stay on the drugs. I don’t want him on them either. I agree stress is huge. Need to get him through college. Very concerned about long term affects of meds. He says he’d rather have his colon out. Obviously issues with that too. Strict diet tough for a college student and yes he drinks alcohol. Do you feel Dr. Young @ Stanford is the best? How about UCSF? Thank you ! You’re very inspiring.
Wow, it’s crazy reading this as it’s pretty close to how my deal was although I was diagnosed a bit later than your son.
The Remicade part sounds identical to how it went for me too. And that can be very frustrating when something works then suddenly stops.
Regarding Dr Young, he was not taking IBD related patients when I was diagnosed… and I believe that’s still the case. He is great for colonoscopies though.
But, if you can manage it, and it’s a big pain with the commute from PA… Dr Neil Stollman is an amazing GI doc. I’ve seen him for many years. He even did a colonoscopy on me. And… he too has ulcerative colitis. But, he is based in Berkeley/ Oakland.
I wish you and especially your son the very best moving forward.
Thanks, Adam. I will definitely look up Dr. Neil Stollman. Congratulations on your good health and thank you for starting this website. It’s been a great resource.
Hey Adam! What a journey. I remember I bought your book (basically a biography of your UC journey) in 2010 or so, and -Full disclosure- it didnt really help me that much at the time. But it helped me discover you and the community, which inevitably led to greater curiosity and greater awareness of others’ experiences. Love your emphasis on the role of Stress in this article, which to me has been the crux of my UC. The struggle against UC for me has been the struggle to balance my mental, spiritual and physical health. Looking forward to decades more of watching this community grow.
Thanks Adam! 2011 was the year I found out. Dark times back then. I don’t think I had any relief for 1.5 years after the diagnosis, but I have since put a solid remission together. Solid poops 1 to 2 times a day. It still gets questionable when the seasons change or anxiety creeps into my life, but nothing like before. Like you, I thought my life was over, but I just returned from a bucket trip from Ireland. I never thought I would’ve been able to do that 7 years ago. Colitis is just a small part of my story. Thank you for giving us a forum to get together on.
So glad to have received this update. I am very happy for you! You provide some hope to tough times!
Approximately 30 years with U.C. On Imuran for 7/8 yrs. one flare-up 2 yrs ago when I reduced Imuran from 150 mg daily to 100 mg. Won’t do that again! Liver function testing 4 x yr.
Can I send this directly to Sandra Hallett? I have also had my UC for about 30 yrs. I am on Imuran plus Lialda. Just curious, if you are doing anything besides the Imuran to keep things in check.?? Do you do the diet that Adam suggested? I appreciate the messages on Stress. It can get everything out of whack. Just looking for someone with a similar life experience.
It gives much hope to hear from some one with UC for such long period of time. Hope to learn more from your experience. I am with UC for more than 8 years and i usually use predinsolone when flare up. Do u have experience with prednisolone, and what do say about it
You’re the best and you always will be.
You started this site and cared about everyone like no one else ever could.
I am thrilled that you are so well!!!
Congratulations Adam. You are the one who rocks. You are AMAZING and a real inspiration to all us UC’ers. On October 10th, it will be 7 years since I was diagnosed with UC. For the most part, I am in remission….thank God. I weaned myself off the meds right in the beginning. I now take a Probiotic and seem to be doing pretty well. Thanks for all of your support all these years and hope you have continued good health!! God bless you Adam.
Dude! I live in HK, would have been good to catch up with you.
It looks like you are happy there, having fun, eating good food, biking, hanging out with friends… Please post more videos when you get a chance.
I remember your web site from almost the beginning and boy, you HAVE come a long way, literally now.
Be well and thank you for starting such a wonderful web site.
Thank you Biljana, I remember when you wrote in the very first time too:). I for sure will try to get some more videos going in the future. Wishing you the best,
What rubbish. We need to know how you cured yourself!!!!!!!!
You need to research the web-site Adam has so wonderfully put together for us. Everything you ever want to know is on his web-site incl. my book Cathy’s Free Ebook on how I cured myself. It is hard and time consuming but the alternative is not pleasant.
You can do it!!
So great to hear from you again. I too ordered your book when I was first diagnosed after my hospital stay of 2 months. I love to hear from you as I am pretty much on this same path. This happened in 2011 and it took me at least 2-3 years to get well as you know (my book on your site Cathy”s Free Ebook). I feel so good now with better health than before I was diagnosed…. 20 pounds thinner but much better health. I thought I was healthy but now so much more energy and no bleeding for over a year now.
Thank you Adam for this site it helped me so much to cross reference everything that is here. Now I am drug free and full of life.
Hi Adam (from down under). Great to see your fit and well mate. Diagnosed 4yrs ago and found you pretty quickly as i was a little taken back with this new friend (UC) i”d found. You and your site eased my anxiety and thank you for that. Ive actually just got home from being violated haha (colonoscopy) this morning. Flared up after easter (too much chocolate) and just getting back into the swing now. My Docs thinking of starting me on Remicade which im not that keen on. Its time to get my diet/food intake cleaned up i think. Thanks again for all the help. Baz (Sydney)
Enjoy your blog and your book Thanks! You have made the poop, pain and anxiety of UC easy to talk about. I was in remission then had super stressful work scenario that woke UC from slumber – back to bed – couldn’t leave the house ect I was really sick again for a two years meds ect. I was desperate because I am sensitive to the meds so I tried Fecal Macrobiotic treatment (FMT) last October. I found it really effective with good diet. While I am not symptom free I am sooooo much better (almost med free) and have not had to deal with the merri-go round of steroids ect. I am having a top up treatment at the moment that will hopefully put the beast back to sleep. One more thing, I can relate to the anxiety experienced by others, it can be lonely because most of what we deal with is unseen… happy pain free poopin :) Donna
Hi Adam. Thank you for sharing your adventures with us. My son has UC now for four years, I told you before. I am so glad to hear you are doing so good. You look great. I wish you the best. God bless you.
Thank u adam for sharing this experience of yours. And thank you so very much for creating this platform.
congrats for you are being in a good shape (i have also read your recent colonoscopy result). I have been in touch on this website for around 6 years, it was very helpful, especially the real life experience of ppl with the same health issue is very very helpful.
I have been with UC for more than 8 years, and glory to Lord i am also in a good shape now. The only thing that is making things hard for me with my UC, and also with other things, is stress. I am glade you have mentioned it in detail here. I am trying to handle it. If u have something to say to me you are most welcome. THANK U THANK U THANK U …. AGAIN
Just reading this made me feel like I wasn’t imagining things. I am now 27, diagnosed at 22. Started on medication and it made me worse…a few years of ignoring my symptoms and making some poor lifestyle choices I moved towns and made some changes.
I wanted to lose weight, anxiety and depression had me go from already being in the 90kg range to over 110kg. I managed to get down to a fit 72kg and was wearing a size 8 (Australian sizing. Size 4 American)
I wanted to lose weight, not even for my disease, just for myself cos I was sick of puffing taking the bin out. Sometime in amongst exercising and trying to eat better my UC symptoms disappeared and I was symptom free for a year…sadly I got very sick with a chest infection and sinus and throat infection and 2 rounds of antibiotics and other medications flared me up.
But slowly…through trial and error and some help from my amazing doctor who doesn’t believe in always prescribing antibiotics my UC is finally going down again. Back to normal coloured bowel movements and a lot less urgency.
I love reading how you aren’t on medication…my doctor was amazed especially with how inflamed my entire bowel etc was. I am so glad that you have also gone medication free…some people are sceptical and maybe it doesn’t work for everyone but it did for me, and you as well.
While I was in remission I finally entered my first relationship and when my disease flared up my partner has stood by me 110%. He is always looking out for me and makes jokes when I’m feeling upset about it etc. And it’s just amazing because I never thought I could be this happy after being diagnosed…i am the fittest, healthiest and happiest i have ever been in my life!
Thank you for sharing your story!
Way to go Adam! Love your updates.
Keep kickin’ UC’s butt!!
Time sure flies and Our journeys continue!
Here’s to continued health and adventures.
All my best from here in Maine! Shelly
What up Shellllllyyyy!!!!!!!
I hope you be enjoying the fall colors and maybe even getting some enjoyment of cranking out the rain/winter clothes…:)))
Hoping to get up there to Maine this year myself, didn’t get the opportunity last year and pops be grumped out I didn’t…
OK, I hope you are well, and stored some blueberries for winter, and best best best to you…crazy that we’ve been communicating for nearly 10 friggin years now…but still haven’t met in person..:)) wow….
Cool stuff man. I was diagnosed with UC 2 days ago, and have had this feeling like i’ve already lost. I’m trying very hard to change my diet, and it depresses me thinking i may never eat a cheese burger with the works again. However, reading your story has uplifted my spirits a bit and has given me the hope that i could possibly live a “normal life” in the future!
Not sure if you’ll get the chance to read this or not but I thought I’d give it a try. I have Ulcerative Colitis. I was diagnosed 2 years ago while I was pregnant. Last year was a really tough year for me. I was constantly in and out of the hospital. Put on steroids and all that good stuff. I was put in remission and relapsed again. My medication was no longer helping me. I had a colonoscopy a few months ago. Long story story short (it was the worst it’s ever been). I was bummed. They wanted to put me on Uceris and put me on some immunosuppressive drugs. There was no way I was putting myself through that again. I decided to not go back and heal myself. I put myself in remission but recently relapsed again and feeling a little discouraged. I guess i jumped the gun and started eating raw fruit and veggies to soon and started flaring once again. Now I’m eating nothing but broiled salmon, chicken, eggs and carrots, and lots of water. I’m on Day 3 still bleeding and diarrea. I was wondering if I should switch something up or if this is normal. I’m definitely not going to the bathroom 6 or more times a day anymore so there is progress. If you could give me some tips or anything I would greatly appreciate it!
Best of healing,