Thanks so much Curtis, it was such a wonderful treat to be able to finally meet up with you down there in your homeland. My wife and I really enjoyed hanging out with you.
AND, I wish you and your family the very best moving forward, for sure they’ve some tuff times a few years ago worrying and thinking of your health. It’s so great to see you doing so well, and living and feeling like a normal person like you deserve once again. I have no idea what it’s like to be living without a colon, but once thing is for sure. You MOST DEFINITELY made it super clear to me that the most important things in life don’t change a bit, and its for sure possible to still follow your dreams. Best of luck to you with the T-shirts you’re cranking out.
To everyone else who follows the site and is reading/watching along, please do Curtis a favor, and fill out the simple poll/question with regards to the shirts he is in the process of designing and creating. He wants to know how many of you would be interested in ordering one of his “No Colon Still Rollin” shirts.
Most importantly, more than anything else, I hope that every single person who follows this website who has not had surgery (and that’s over 90% of the daily readers here) has been able to take a positive message away from this video. Yes indeed, surgery is a scary idea, and nobody wakes up in the morning as a happy healthy person and says…”DANG, I can’t wait to get my colon removed today!”. But, the reality is that a fair number of people who live with ulcerative colitis, people like you, people like me, sometimes need to make that tuff decision. People like Curtis for example. And if you watched the video closely, it should be VERY clear to all of you that there is most certainly life after having your colon removed. And the truly awesome thing is that the lifestyle for the overwhelming majority of UC’ers after surgery is way better than that group’s life before surgery when their UC was out of control.
Thanks again Curtis, I had a great time kickin it with you on the beach, and best of luck moving forward,
Adam Scheuer
(to read all of Curtis’s previous stories, check out his link to his stories here: Curtis Stories )
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.
I was diagnosed with UC in Aug. 2006 and my life literally turned upside down. My UC was very severe and I was having bowel movements sometimes more than 30 times a day. It got so bad I was forced to retire in Oct. 2008. But, I was fortunate, I have a wonderful GI doctor that after working with me for a couple of years prescibed Remicade infusions beginning in Nov. 2011. I had the infusons every 8 weeks for 17 months. I started leading almost a normal life. Having bowel movements now only maybe 2 or 3 times each day. But, then the awful happend. I developed an allergy to the Remicade and started having severe swelling of my tongue, throat, and face. Severe enough to be life threatening. I now will be seeking additional meds to keep me “somewhat normal” but I have to wait and see. I’m happy to know that so many people have been given relief from UC. I hope and pray for them and others. I also hope and pray that more interventions for UC can be developed. I am pleased that Remicade brought me back to almost normal before the allergy developed. Thanks for allowing me to post.
Another great video ! Thanks so much for this superb, informative, “family” website !
Adam! The video came out great! Glad we were able to meet up face to face finally! Good luck on your travels across the country and remember to give me a call if the VW breaks down, my dad knows it all!
Cheers!
Curtis
Curtis,
You da man! And way glad you like the video too. Frying out here in the desert now, and realizing again why you haven’t left the beaches. You pops and I very well might be good friends soon…depending on how the tranny pulls it out.
Best of luck, and take care amigo,
-Adam
Just found out that i have pan colitis . I dont know anything about it and im terrified.. Please help.
Barrett is my bf who was diagnosed with ulcerative colitis
about 2 yrs ago but just recently had surgery to remove his colon
And it’s been hard and he’s kinda scared and angry and
All the other emotions that come with this disease. Just wondering if
You can give him some insight to what you have been through and how
Your life is now! They did a story on our local news station on him because I
Wanted to get awareness out there and it’s definitely spreading and we never
Knew how many other people have been battling this same disease and want to talk
To people who are fellow uc’ers! Please contact him or I we would love
To talk to you..here’s his story as well!
http://www.9news.com/dontmiss/324529/630/Firefighter-tries-to-return-to-full-time-service-after-illness-
Hey Dayla and Barrett. I’d be happy to help in any way that I can. Shoot me an email at cmarcikic@gmail.com
Thanks!
Curtis…been following your story since the beginning…you are one of my UC heroes…keep rollin’! Thanks for your candidness!
Best for continued health and success. Shelly
How about hats and another version of UC still rollin’ with my colon?! :-) (knock on wood!)
Hey Shelly, Thanks!
I definitely have more designs and logos and things in the works! That could be a good idea though, maybe you should pursue that side of things!
More to come soon!
Hi Curtis:
Thanks for your video. My 13 year old son jus had his take down surgery this week – so it was very helpful to read your post about your days following your takedown as well as hear how well you are doing now. I was wondering how come you don’t like to take imodium – do you get side effects from it? I was also wondering if you manage to sleep through the night or are you awakened to go to the bathroom? How often do you go to the bathroom — does it get in the way of playing sports? I would imagine it could be hard to surf ( which my son likes). How long did it take you wree able to resume your activities?
We would order your shirts! Thanks
Hey PKH,
There isn’t a reason for me not taking it really, haha, I just never think to do it unless I know I’m going to be out for a while (Disneyland, Flight to NY and things like that) I don’t have any side effects to it at all, just never think to take it.
I normally wake up 1 time in the middle of the night to go to the bathroom, but I’m used to it so it doesn’t bother me.
I would say that I go to the bathroom anywhere from 4-6 times per day? It’s different each day though and everyone’s body acts differently as well. Again, I’ve gotten used to it so it doesn’t bother me at all. Each bathroom visit takes me probably about a minute as well, haha. No struggling or anything, basically when I feel the need to go, I sit down and let it all out and then boom I’m done.
It hasn’t gotten in the way of sports for me at all. I play soccer, surf, run, bike, hike and everything is totally fine for me.
I think it took about 3 months until I was comfortable doing everything again (and for my incisions to heal all up too).
Hope this helps! Thanks for the feedback on the shirts….more ideas to come!
Curtis
Thanks Curtis! Did you ever get pouchitis? Did you take probiotics ( vsls double strength?) We have been recommended to take them but they the packets are hard to take even mixed in with other food/drinks.
vsl in applesauce…Smoothies..even better! :-)
Curtis and Adam,
This video is awesome. It has been about 2 mo since I’ve had my colon removed and I’m sporting the nice ostomy. I was debating going through the entire process because of some of the “horror stories” of getting the j-pouch, but I feel more motivated than ever to keep recovering. No doubt that mindset is everything with this, especially being a young guy in your 20’s trying to stay active! Curtis, any way that I can get in touch with you via email or something? I’ve got a few questions I would love to ask you and ask about those sweet t-shirts!
Curtis. I have a couple of questions as I just had my takedown surgery
Hiya, great video! I had an emergency colectomy a little over a year ago for UC, I’m all set for the first op of 2 part jpouch surgery on 30th April. I’ve been pretty nervous about what to expect after it all but it’s amazing to see how well your doing! I was 23 when I had surgery so it’s also nice to hear from someone similar age to me! Best of luck with the tshirts :) x
great video. I had my colon removed after having UC for 8 years. I have had an ileostomy for just over a year. My bag saved my life. Its amazing to wake up and your colitis pain to just be gone. I lost so much weight while being sick. I am happy to say I have put 75 lbs back on since. I eat what I want drink what I want and seriously after a year of many learning moments I can say dealing with my bag is like putting on socks. I have the opportunity to get a j-pouch but at this time I have decided to go back under the knife to get the foot or so of my colon removed and get the back door sewn up. Its not for me. I am keeping the bag. They leave part of the colon for the rectum to heal so you have the option of a j-pouch. I love the freedom having a bag gives me. no running the washroom ever. just when I need to empty. Happy to see someone with a j-pouch doing so well. Good luck Curtis and happy you are now healthy. Heres to survivors of this disease.
Awesome video, couple of questions, one is how can i get in touch with Curtis? we have alot in common, same age, same upcoming surgery (one month until i get reconnected to my J-pouch) same weight, I’m down 25 pounds from what i am normally but hoping to pick it back up after the J-pouch. also i want one of those shirts! maybe i can go make my own? dont sue me curtis lol let me know!
Hey David,
Shoot me an email anytime! cmarcikic@gmail.com
Hope to hear from you soon.
Curtis
Awesome video! Thank you Adam and Curtis!
Adam,
So cool to see that. I remember the original postings and following him. He is definitely one of my fellow UC heroes and I often reference him along with the others that have now posted their details and helped take some of the fear out of the surgical process.
Thanks to you all…continued health…Shelly
Hi Curtis,
Great to hear you are doing well. I had my takedown exactly 1 month ago today but am still struggling with frequency and urgency and all that. How long did you find it took after your last surgery before your body fully adjusted to the j pouch?
Thanks,
Chris
Hey Chris,
If I recall, I really started to feel comfortable between 1-2 months after the surgery. It’s definitely a slow process at the beginning, but things should start to get better for you soon!
Keep on pushing forward!
Curtis
Love those tees!!
No colon…still rollin…lol!!
:)
BTW, your wife Michaela is an absolute GEM!! She must know SO much about UC these days!!
Shout out to you, girl…Hey Michaela!!
:)
thx Bev,
will let her know you be thinking of her (and BTW, she loves reading your comments on here too!:))
Great video! Love the tees you made, hope you keep making them. I also lost my colon 2 mos after getting diagnosed, so your story is pretty familiar. Just had takedown in Dec, and and still getting used to the jpouch. It’s great to know that you’ve had such success after 2 years and are on no meds! Here’s to decades and decades more of good health. Thx for posting,
Lisa
Thanks Lisa!
More design ideas coming for shirts as well! Good luck with your J-Pouch
Curtis
What a wonderful interview!! Curtis and Adam thank you for sharing this story. It is helpful for anyone in need of surgery. Continued good health wishes to you both!!
Hi Curtis,
I have followed your story and you are a total inspiration. Glad to see everything is going well for you. I am having my colon removed on the 19th April.
And Adam thanks for the awesome video.
Oh Curtis love the t-shirt and i would definitely buy one from you.
Stay healthy…Sharon (Dublin Ireland)
Thanks Sharon and good luck with your surgeries!
I’ll be posting more about the T-shirts as well!
Curtis
Thanks to Adam and Curtis for doing this video. I do have a question for Curtis. I was wondering how the urgency was? Like Curtis, I don’t care if I have to go more than other people but for me, it’s the urgency that hits when I have to go that I have a hard time with.
Paul
Hey Paul,
The urgency right after surgery was extremely high, but as the days go on it got less and less and less.
Now I can hold it pretty much as long as I want up to a certain point, so there is really no problem with urgency at all for me.
I’ve never had an experience where I didn’t think I would be able to hold it, lets put it that way.
Hope that helps.
Curtis
That is totally awesome, Curtis. I am very happy for you and it gives me encouragement in case I ever need the surgery.
Paul
Great video!! Curtis has truly been an inspiration to all of us! And Adam, still cant thank you enough for having this site! It has been almost one month since my take down surgery and life is great!! I would totally wear one of your shirts…….just maybe in pink, hahaha. Really if it hadn’t been for you and the others sharing their stories, I don’t think I would have made the decision to have surgery. Glad you are doing great!!
Thanks Emie! Glad I was able to help you out!
The shirts are just a first first first round so there is a lot of room for changes and everything, haha. More designs and things to come as well.
Keep fighting the good fight!
Curtis
Sweet video Curtis & Adam! Glad to see you’re doing so well! I would rock that tee shirt, maybe add in a colon necklace. Haha! I think its almost been 8 months for me with a J Pouch, about 16 months colonless. I still can’t believe that I feel this good after going through such a shitty time with UC. There were definately a lot of times where I thought I was doomed to be miserable for the rest of my life. I’m so happy I did the surgery, and so greatful for this website and poeple like Curtis’ story! I think you were the first succesful J Pouch story I remember reading at the time when I was making the decision. It was definately nice to see after reading all kinds of horror stories when you google J Pouch. I’m glad to see you’re doing good too Emie and Lisa! As always, but thanks to Adam! You may not be that great at pullups, but you’re an awesome man! There would be a lot of people going through really rough times without anywhere to turn to if it wasn’t for you my friend!
What up Blake,
You best be watching your poop hole amigo, I’ve been practicing one-armed pullups out here in the desert. haha, gr8 to hear from you. Thinking you’d look good in some “no colon still bull-shitting” earmuffs…:)
Awesome Blake, thanks! Glad to hear that I was able to help some people with my stories and experiences. To be honest, I didn’t think that my experience and story would help as many people as it has, I’m taken aback at how many people have reached out to me saying that I was an inspiration to them, crazy man!
Hope everything is working out for you!
Keep fighting the good fight!
Curtis
Thanks Curtis for sharing! you have inspired me…it may be my next move…after 37 years with this disease…Im done.
Keep on smiling
Great video and story – thanks Adam, Michaela and Curtis! I have a question for any who have freed themselves with surgery. Is it always necessary to exhaust the pharmaceutical treatments, before they’ll consider you? I have a phobia of prescription drugs, but I think it’s well-grounded. I see too many people living a poisoned half-life, on a chain of drugs that make them sicker. Unfortunately, the food-altmed-supplement route isn’t helping me either, in this flare (since last Sept), and I keep losing blood and I feel completely helpless. But when I ask my dr.s about surgery, they tell me I’m not a candidate b/c my colitis is only left-sided; it’s ‘mild’ (doesn’t feel mild to me, when I lose .5 g/dl hgb/wk); and I haven’t tried all the wonderful pills and injections they’ve spent billions creating for me. ‘No surgeon would consider you at this point,’ they say, ‘because you’re more likely to have success with our drugs.’ Is this true? Do I really have to live through 10 years of side effect hell, and face surgery when I’m even older and less able to recover? I’m about to start Remicade next week, and I guess I’m freaking a little.
The video helped me as well. I have done all the pills and now off all the pills and am on 2 injections; Humeria and Methotrexate. Losing my hair, feeling yucky and still having “issues”. I am having more “better” days than not; however, I feel like I am living 50% of my life. I am not young (52) but I have been a very active ol’ lady until last June. My GI doc says to stay on the meds and I will have bad days! I don’t know about anyone else, but since the injections I could be bound up and total liquid!!! What the heck! Doc doesn’t seem worried about that. I also now have a hernia on my left side, same side as my colitis, grrr! Surgery soon for that repair. I was told that surgery could help me, but I was nervous walking around with a bag!!! So now I will think more yay than nay, thank you Curtis and Adam!
Oh and I am also having acupuncture; it can’t hurt, right?
It’s really cool to see such a community of people all dealing with this and living so positive and care-free. I’ve been putting off surgery for a couple years now, and my doctor finally sat me down and told me it’s going to have to happen. I guess my big concern is the interruption of my life. I could probably deal with a bag, but finally setting a date for surgery keeps escaping me. I work full time and am finishing up college, and am trying to make that big career move. It just seems like a month away from work to recover would be really hard to find in my schedule and would probably set me back a ways in my career plans, let alone two months in the same year. I’ve heard there is a one-step procedure that can be done, and for a guy like me who needs to be… uninterrupted, for lack of a better word, that would seem like the better option. I guess there are more risks involved? I dunno… part of me wants to wait and see if in the coming years there will be some awesome breakthrough making a one-step procedure safe and manageable, but the other part of me (especially my guts) are begging for answers now. I’m stuck… thoughts? I mean I’ve dealt with the daily pain for years now, what’s a few more?
Mike
I took me 8 weeks to recover form surgery 1 of 3 and in the 2 step process it takes longer. Don’t rush it and just remembr your colon is a major artery and it does take ikme for your body to adjust and heal properly. Good luck with your decision and make sure you choose a surgeon and hospital that deals with these surgeries on a daily basis.
Mike H
Thank you Adam and Curtis for sharing this inspiring video. I have had UC for 16years and in that time I have gone through many dreadful days spent preoccupied with the fear of, “What if someday I’m left with no choice but surgery?!” And here is a true-life person who has “no colon and is still rollin'”! Very comforting,very real. Thank you!
Curtis you are my HERO! You have inspired me and given me hope and insight that I really need right now! I am having my first of 2 surgeries for my j-pouch on June 10th and I am so afraid of the unknown. You can check out my story on here under “About to become j-pouch Jackie”. I am actually opting to have the surgery because I am on the last resort meds and they are taking a toll on my body and I can’t imagine staying on them forever or having a flare and having an emergency colectomy (fun options right lol).
One question that I do have is after your takedown surgery how many weeks do you think you need to take off from work before you are able to go back. I know it varies depending on the person but I am just trying to get a feel for it. I am a teacher so it makes having these surgeries tricky. Luckily I can can the first one over summer vacation. The takedown I plan on doing around Christmas break. My classes are an hour long and I am right next to a staff bathroom thank goodness!
Well thanks again Curtis and a shout out to Adam too! Oh and I would love to buy a t-shirt!
<3
Hi Curtis,
My second surgery in the 3 step process is in 5 weeks. I would love to rock one of your shirts into the hospital the day of the surgery and the day I walk out to go home. If you get things setup to sell them I will make sure I will distribute the info while I am in the hosptital. I would love to get my hands on about 3 or 4 of different colors for myself.
Mike
@ Mike H
Second surgery is a breeze….nothing like the first. Good Luck to you.
I had the surgery in December, 2011. It was the best thing I have every decided to do. No side effects….like Curtis said a little slow for the first two months – – after that every week gets better. However, everyone’s body is different. Some days I go about 4 times a day. It really depends on what you eat too. A salad might put at 6 times for the day. At night, I usually don’t have to get up. One thing I will say, is you must have a good doctor. I had the best in my town.
hey fellow j-pouchers have questions im only 15 and i want to know if peaple play sports eat anything could be able to do wrestling in h,s after the surgery?
Thank you Adam and Curtis!!!
We are considering the J-Pouch surgery for our daughter.
All the meds are getting old and it isn’t doing anything but keeping her from bleeding until the
next flare. She never feels well, can’t keep weight on, moody, tired, acne, etc
This video has really made up our minds that surgery is the best choice for her, and give her a life back she can enjoy.
We appreciate you sharing your story.
ps.. your shirts ROCK Curtis. We will buy em!
Chris, Kevin and Kelly
San Luis Obispo, CA
I would buy a t-shirt if I didn’t have a colon. Which may happen sooner than I want. What about T-shirts for people with UC that still have a colon? I’ll try to think of things to say. I’ve definitely heard jokes, but can’t remember any at the moment. Glad you are all healthy now. I still hope I don’t have to do it, but I am so sick of living in fear of not being able to function and then it coming true with a flare.
Hey Adam and Curtis
I just got home today after my 1st surgery. I had emergency surgery to remove my perforated colon. Good to read your stories. Makes me feel better about the surgeries that will soon follow. I’ve had UC for about seven years and my third flare finally did me in. I had wanted to save my colon but after only a week without it I wish I didn’t wait and had surgery before I was in such bad shape that I had no choice. It is amazing how much better I feel even with this pain from surgery. And its also great to know I will no longer had to take anymore side effect filled prescriptions. I wish I had found Adams website earlier. It is definitely the best place I have found for info and the great stories like yours who are going though the same things as me. I think your shirts r awesome and I definitely need one.
Thanks again.
Johnjoe
Tinley park Il
Curtis
One question I had for u was how long did it take from your first surgery to the end of your recovery of your last surgery?
Thanks Johnjoe.
Really informative video and proof that there is life, in fact improved life after surgery. Amazed that Curtis no longer has to take any medication, what a relief that must of been.
Hi Curtis,i m so happy for you and its so inspirational to read your story.i m waiting for my surgery after 20years of UC,4/5major relapse thrice ihv take remicade n here in india thrz no insuarance.now my GI who was tryn d best to avoid surgery hv advice me to go fo surgery.i told m sister though d surgeon told me dreaded things about surgery i keep reading stories like yours in Ihv UC, m realy thankful to Adam for this site and all the people who hv this UC, who are brave.im hoping and training my mind to be strong like you.i hope and pray everything will turnout well.im also glad you mention you play soccer,surf etc i used to play busket ball, n soccer initialy with mild UC,i used to wear daiper. But as i grow older i start to get depress and grumpy about my UC but when i read your story, how well you cope m ready for it.
Hi Curtis,just manage to watch the video,thank you and ya to Adam for this wonderful site,here some of the people are negative about the surgery i even met a surgeon who only talk about the chances of getting UC after j-pouch so i went home bit upset.but with all d support i get from frens, my boyfren,m family and watching your video makes me stronger and ready for it,i realy like wat u said about having a positive mind.i have been to mind power classes there the people who trained pierce needle to themself between their fingure and feel no pain so i believe its all in are mind.well the fact is this is apart of me saying this,but m bit afraid but look forward to my surgery m fadeup of staying home whole day.im an active person initialy whn my UC was mild when i was 15/21/23 i would play busketball, go for dance in d club,shopping even with my flareup,those days i would wear pad.thank you once again,i always say il not write long mail but that never happen coz i hv so much to say to UC ers coz people who dont doesnot understand much i feel like an allien trying to explain my feelings and my pain.when m in pain or feel depress i would just cry for few minutes and feel better,n when i do that, my boyfren wont understand she would just ask me do you have pain,dont be scared m with you.but its just the feeling of crying n feeling ok:-)i usualy dont hv pain.im now 34 today m going to see the surgeon my GI doctor suggest hope m comfortable with him.i dont like doctor who are materialistic or who without listening just tell me anything they want to.
Sorry no proper punctuation and spelling my typing from my mobile
Hi, I watched the video and I will have my 12 yrs old son (Dx UC in 2010). He has been struggling with the damn disease for so long and his UC has been so aggressive he has run out of meds…and he’s had them all up the Humira once a week. Surgery is our last resort to kick UC’s ass! My baby has been so alone in the disease…he has never met anyone else with UC his age who could identify with his UC rollercoaster journey. We went once to the Painted Turtle Camp in LA area and the was the only time he was with other kids he could identify with…long story short…could we arrange for you to contact him as he is scarred about he impending surgery with will be sometime this March. He is the best lil guy, and he’s tired of being sick all the time :(
Thanks in advance.
My daughter is 9 . Diagnosed 2 years ago. Major flare in hospital for a month… Released… Remicade now not working…. Being re-admitted. … Decision on j ouch surgery vs cyclosporine / azathiorprine duo therapy…..any advice?
Hey dude I am amazed that you were able to survive your surgery after finding out so quickly that you had u.c. mine wasn’t as sure as yours was I was that goes why I was 9 had the surgery 15 almost 16 years later. I would absolutely love one of your shirts I’d be proud to wear it. If you could send me a 3X I’d be more than willing to pay the extra fee for it that would be great.