WOW, IT’S ALMOST BEEN a week since I got my colon probed (the full colonoscopy not a sigmoidoscopy) and I just received the “go ahead” email from my doctor to post the video I recorded (he’s talking in most of it, and I’m sure some doctors wouldn’t like being on YouTube, but not my gastro), thanks Dr. Stollman on that, and thanks for doing such a great job and being a gentle-man. And I’m not just saying that because you’re a cool dude, but everyone at the colonoscopy center was incredible. Who knows if I’ll be singing this song when the $1600 expected out of pocket bills come tumbling in over the next few weeks. That’s right, scopes don’t come cheap, whether it’s out of pocket or not, the costs for the procedure…wow they are up there.
MAYBE FOR YOU, and definitely for me, colonoscopies are a super important part of having UC. Yes the colonoscopy preparation isn’t always fun, and yes, getting a camera gliding and sliding up your colon isn’t exactly like going to Disneyland. But it’s a part of the program for most of us, and it’s nothing to lose too much sleep over.
As you might remember, back on June 22nd I wrote a post explaining that I was interested in getting a colonoscopy because “I wanted someone to take a peek inside the deep dark doodie hole and see what’s really happening.” So now three months later, my day came. Below is the video. I don’t have any of the pictures that were taken but I think this should give you a full idea of how my insides are doing.
Two Days Ago (October 2, 2012) was my 4 year anniversary of my diagnosis.
Back on October 2nd, 2008, my entire colon was severe with out of control UC and my symptoms were out of control. I’m super happy and very thankful that things are very different now, but I’ve still got a little work to do, and some decisions to potentially make. One thing that you may relate to from the video is that even though you feel fine/normal on the outside and in your daily life, there’s still a chance that you can have mild UC on the inside. Pretty interesting right? And in my case, that’s what made this colonoscopy super valuable. I wanted a sanity check back in June, and I got one. I’m feeling great, but the insides aren’t perfect, and that’s what I’m shooting for before 4 years is up and I’m at it again with the scope.
I wish you all the very best with your UC, and there’s a ton of more stories I’ll be posting that have already been submitted and are sitting in my inbox. And we’ve got a pretty cool survey coming up in a few weeks, so get on the newsletter if you want to participate.
Thanks again for watching and I hope you enjoyed the video,
PS: Way cool meeting I had today with another UC’er here in Berkeley named Vanessa. Really really nice meeting her and hanging out and hearing her story. I’m sure she’s going to get through some of the tuff times she’s facing right now. For me the first year was BY FAR the hardest, and that’s not uncommon.
PSS: If you’re in the Bay Area of California, or you don’t mind traveling to a super cool GI doctor, I’ve got to say that Dr. Neil Stollman is a pretty incredible GI. I’d say he’s got to be among the best of the best, and hopefully you got a nice warm feel for him here. (Maybe he can be convinced to get in on some more videos in the near future…:) ALSO, for those of you interested in Fecal Transplant stuff…good old/young Doctor Stollman was one of the doctors who was a part of the recent study that has been all over CNN and the rest of the news regarding C-diff and Fecal Transplants. That was actually a key factor in why I decided to pair up with him when I went searching for a new GI closer to me here in Berkeley. That study which was released back in March is titled: “Long-Term Follow-Up of Colonoscopic Fecal Microbiota Transplant for Recurrent Clostrodium difficile Infection”.
PSSS: The does anybody have any idea of what song I’m trying to play on my 2 week old guitar that I’m trying to learn how to play??? There must be some kick butt UC guitarists out there, anyone giving lessons…:)
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.
Thanks for sharing the video- it was both funny and touching. You are lucky to have found such a cool and humble doctor. It has been three years since my colonoscopy, diagnosis and 2 1/2 years since I have even seen a GI doctor. Finding a doctor with mutual trust and respect is a huge challenge and your video inspired me to start searching again- my experience with them has just been scary and demoralizing but I have to believe there are a few good apples out there!
Best of luck, don’t get yourself down that you still have 25% UC- figure that you have cured 75% of your colon and healed all the damage from all those crazy drugs to boot. Your body has been busy. I think natural healing takes a long ASS time and YES! the promise of a quick remedy (2 little pills a day) is so tempting (and maybe too good to be true). I am sure you know what is best. Just know I believe in your healing 100% whatever you choose.
Thanks again for this site- all the positivity and support really helped me out my (scary), first flare. I am feeling great again! This site is a daily ritual for me and I love it.
What up Allison,
Way cool to hear from you! I most definitely remember posting up your story just a short while ago, and it really makes my day that you’re enjoying the site. Glad you liked the vid! It was pretty fun watching it an re-watching it, I think my folks got a kick out of it too, so that’s always good right!
As for the GI search, I wish you well. And you know what, I got to pat myself on the back with this one, because I actually did some calling and the old fashioned walking into several GI practices in my area before deciding on him back in June. Maybe its easier where I’m at (in a big metropolitan area) but either way, it took pounding the pavement to figure out who I thought was going to be the best for me and my deal, and the added bonus of finding out he too has UC didn’t come up until during our first consult. So take your time, do some research, call the offices, and ask up front if there is a GI there that is into “this, this and that” and fill in the this’s with whatever you’re looking for, and who knows, you might find what you’re comfortable with and/or looking for…Stranger things have happened, and SO SO happy you’re feeling better!! Way to go.
Thank you for sharing this Adam. We all know the stress of waiting for those results and it takes a big person to film and share this. I know it’s not perfect but the fact that you’ve progressed from such severe disease to such mild colitis is inspiring and I don’t doubt with the addition of some meds you’ll be in full remission soon which is fantastic. Your GI seems like a lovely guy btw (and I’m sure it’s in part due to the fact that he has UC himself!)
Thanks so much Shelly for the kind words! I know I was still a tad… bit luuupy or yaked out, or whatever you want to call it during the video shooting, but I was pretty sure some of you would get a kick out it, and especially for all those reading who have never had a butt probe and are wondering kinda what it’s like, hopefully it gave a decent idea of what to expect.
Would have been cool to interview some of the other crazies who were in the scoping center…Downtown Oakland’s definitely got some charachters…For surezies!
hey adam! so glad your colon has healed from last time! that’s great! it takes a while for things to get back to normal. hope you do what is best for you. maybe it’s just a wake-up call to be more strict with diet or supplements.
I’m not positive, but I’m expecting an even better butt probe in a few more years. I don’t want to make it seem like a game because it’s not, but it kinda feels like one. Almost want to put a microphone on the end of the camera and start talking some trash to the old colon next time…:)
Take care and best of luck to you,
I took mesalamine in the form of Apriso 375 MG x4 a day and Canasa (suppositories). I had nothing but bad luck with it- experienced severe allergic reactions that I didn’t have with prednisone and hydrocortisone (steroids + enemas). I know that it works for a lot of people, but I experienced worse symptoms with it. Just a pre-cautionary tale here to watch out for! Your GI seems very comforting and keeps you well informed, glad you have him.
Thanks for the comment, and that’s too bad the mesal didn’t cut it for you. I’m not doing anything different just yet, but at the end of the day, I think we should all be thankful that there are always options for folks like us.
Hey dude, love the vid. Was thinking, didn’t you spent years ignoring your symptoms initially?!! So I guess to be where you are 4 years on is pretty good – going from severe to mild, inspires us all to think if you could travel this road we could get healed. I mean image if you give yourself another 2/4 years. Total remission no doubt!!!
What up Family Boy,
I got to tell you, I laugh get a grin just reading your user name each time it pops up man! I totally remember setting you up in the system a while back and laughing at it then too. I don’t know why, but you picked a great username!!
yeah man, overall its some pretty good news with the scope, and just knowing what’s really happening inside is some key input. Who knows where and what will be happening next time, but I’m definitely about to declare WW3 on the old colonius maximus.
Best of luck to you and your FAMILY!!:)
Its unfortunate that you still have some colitis going on, but its a way better sign then four years ago when you were debating at getting ride of your colon. You have came a long fuckin way man…, it sounds like its healing slowly but surely…. Props on mannin’ up and going in for the scope….
Gotta be one of the most embarrassing procedures out their. You definitly made a embarassing experience into a fun one with the video taping and what not, thats why we all love ya on here on this website haha
He does make a good point on the medications, but once again we all hate pills, I myself am down to two lialda pills per day, in hope of getting off in the future, but I hate it when docs scare us like that and act like we have to do it…. It seems like you been doing a hell of a job without meds, but once again the docs got the years of experience, but its our bodys and our choice but honestly if the biopsys come back good with no signs of cancer, and your feeling good, do you necessary need to put pills in your body? I surely dont agree completely about the no side affects like he acts,but defintitly way better then remicade and humaria etc..
Overall seems like a pretty damn chill doc.
Keep us fellow UC’ers updates and I hope to hear some more good results/news in the future..
Take it easy bro,
What up JD,
Glad you enjoyed the video amigo. I think what would be he coolest is if two of us on the site ran into eachother in the butt probe room someday… It’s gonna happen senor.
My gi’s pretty cool, I couldn’t ask for anything more. And at the end of the day, we’ve all got tuff decisions to make with UC. But really, it all could be alot worse.
I walked by at least 3 people today in San Fran who were cruising in wheelchairs, and other people with all sorts of other medical/physical things going on. And I crap you not, it puts alot of the minor UC stuff that sometimes comes along into perspective.
Take care amigo, and get your pullup on, shouldn’t you be practicing:)
Thx for sharing. Great video. You were surprisingly lucid for just coming out of the fog!! You sure have come a long way since 2008, and by your next scope, I’ll bet your colon will be 100% disease free!!
I swear I was in the middle of a deep REM sleep period moments before, and then whaaaam, baaaam, here comes my wife and my doc, and OH SHEEEEEEET, where’s the camera!
Talk to you soon,
Great video…pretty impressed with your abilities post-osocopy! I know I already posted on the other post-but you rock …okay, the guitar needs some more rockin-guess I can’t speak I have one from when I was 12! On my bucket list to relearn and better -i was hoping my fingers would grow longer! Maybe electric? Oh, I can’t read music well either! Dang.
Anyway, you are kickin’ some uc butt from all angles…we know (well pretty sure for now) it is a war-so keep battling.
Do I see the yogurt machine on its way back out?! How long you gonna keep those scripts in your wallet? I think last time we both had ’em till they were close to expiring! I’m not sure there is a “right” answer just what is best for you. Maybe you could try some things-the yogurt/probiotics, herbal? And they’d let you swallow the video cam pill? Wouldn’t that be soooo awesome?
Wishing you all the best and keep rockin’! Thanks Adam, Shelly…the one in Maine, of course! :-)
YO YO SFM, (Shelly from MAINE!!!)
Yogurt machine/ Guitar dig out contest. You ready…. Let’s see who can 1) Find 2) Dust off and 3) Put to use fastest! GO!
I’m so happy that someone made mention of my craptastic guitar skills…:)) I can’t promise a perfect colonoscopy next time, but I can promise some better tunes. But then again, when youre starting from basically nothing, improvement is quick eh… Learning curve maybe…heck, maybe similar with going from severe to mildness…OK, maybe different there, but either way, I’m going to look up some old NorthEast folk songs and start busting them out.
A little JT…classic new England! I thought your first video was a hint of Jack Johnson! :-)
Yo amigo! Nice video. Your doctor is way cool man. Sorry about the little bit of UC going on, but overall, that was a damn good colonoscopy result for a man fighting UC since 2008. I would suck it up and stick those enemas up my ass like he says… but they do suck. Who knows, you may start liking them after a while. Haha! I’m happy for you bud! Good idea to videotape the doctor afterwards because I never remember anything after waking up from the sleepy juice and cheers to your wife for being right by your side. Now it’s time to get your ass in gear and start your pull up training. Times a ticking away. Good news for you, I’ve gained 15lbs since my final J Pouch surgery. That’s 15 more pounds I have to deal with when I do these damn pull ups… but I ain’t scared. Peace homie!
You know I was bullcrapping you earlier when I told you i only did 5 pullups the other day right:)
I am expecting to hear sort of the same news when
Ooops…as I was saying above…I am expecting thr worst, but hoping to hear the best.
I am so bummed about the drugs, tho. The doc had a damned good case alright. Sheesh. Cancer is so scary…I really didn’t think the asacol would correlate with lessening the risk.
I just know that my pill pushing GI (not as cool as yours) will have at least the same advice.
I’m sorry you are not completely UC free. You sure deserve to be!
What up Noel,
Hey, don’t trip the cancer stuff. LIke he said in the video, its a very small percentage and not worth losing sleep over.
I can tell you this if it helps you out at all, since starting the website 3 years ago, I have not heard from a single person who’s said they got diagnosed with colon cancer. And I’ve talked with and received emails from thousands of UC’ers so no losing any sleep over it alright!
All the best to you in the future,
Great video, Adam. I do the mesalamine enemas every other night and the pills everyday. I go for my colonoscopy in a month – Nov 10th. Great that your disease is mild.
Good luck with the upcoming scope. I wish you the best with it.
I’ve just been directed to this website from Facebook. Great vid and nice to see what you have done can be followed and achieved by a fellow UC sufferer.
Going to purchase and print your book and get started. I am not an UC sufferer my wife is so I know exactly how you guys are feeling as I can see just how from my wifes condition.
If the book is followed at what point should she start to notice an improvement? Currently takes Mesalamine (8 tablets) as in flare up and an iron tablet because she is a vegeterian so lacks iron nutrients from red meat.
Many thanks and an very informative website.
Hey Chet out in UK,
Welcome to the site, and glad you liked the video.
If you’re interested in reading my ebooks, you should know one pretty big point. My books are not written as a “this is how you will get past UC”. But rather, they are a detailed documentary of how I went from undiagnosed to diagnosed with Severe UC to almost getting my colon removed to getting off medications and feeling better mainly through dietary changes all over the period of several years. When I started altering my diet, it was only a few days until I started seeing positive results, and I was off medications for a long while within a few months after that.
I wish you guys the very best, and way cool you’re researching out the internet for your wife’s UC,
Hey Adam, nice to see you got some great news! Did you ask the doctor what his thoughts are that you went from severe UC to very mild UC just by changing your diet? If so, what were his thoughts?
He actually knew all about what I was doing before the scope and was very supportive of it, he’d definitely met others doing something similar before. Besides what you saw I haven’t spoke with him since.
Gotcha, I’m interested to hear his take on it. The fact that you were on the heaviest meds with the most severe UC (pancolitis/severe) and facing surgery…and now only have mild UC with no meds….amazing man.
Just wanted to give a tiny update. I’ve spent the last twenty minutes doing some research into Cancer and UC and using Mesalamine.
Anyways, there is a recent PUBMed study by several doctors/researchers which talks in detail (not as complicated reading as you might think) about mesalamine and the costs/benefits etc…
At the end, in the “Conclusion” section, there is a pretty interesting comment which I hope will entice some of you to read the full study. Here’s what I just read:
“There may be additional benefits from mesalamine in chemoprophylaxis against colon cancer, but there is conflicting data on this subject.”
The link to this completely FREE PubMed study for those who want to read the whole thing in its entirety is here:
Happy Saturday UC’ers,
Thanks..pretty sure I read that back ago…thanks for the reassuring conflicting quote as a reminder! :-)
hey dude maybe your fellow colitis bloggers would be interested in knowing that …..HUMIRA was just okd for treatment w/ ulcerative colitis …just got the ok last week …im trying it ….and will leave remicade as a last resort ….ive told the doc no to remicade for a yr and a half now ….
What up Anthony,
Best of luck with the Humira buddy! We actually had a few posts over the past month regarding Humira being FDA approved, you can search them to read some of the responses if you wish. Good luck with it, and keep us posted how it goes for you!
Adam, so have you decided to take the 5asa drugs?
I haven’t made any changes yet, I’m going to be going back in and meeting with my doctor in the near future, no date set yet, and I’m guessing at that time I’ll have a better idea on what may or may not change with potential treatments moving forward. Thanks for asking thought.
Crazy enough and slightly related, I was in a medical office yesterday in SF for my job, and ran into the Lialda/Pentassa sales reps walking around with their oversized “samples” bag. was pretty funny!
I do have some questions for you. Congrats on improvong your UC but we all know that on any day for unknown reasons a mild case cna turn ugly and your joint pain and UC symptoms can come back with a vengance. If and when this happens what steps would you be willing to take and what steps would be left to take since it sounds like you have tried almost everything including your diet whoich seems to help some UCers. Will you be doing a survey to find out if any UCers that found remission with your diet have suffered any flares since? Thanks for the web site. It is great how a site so simple as this has helped so many cope.
Thanks for your questions, and I hope your making a full recovery from your surgery.(I’ve been reading your updates you’ve posted throughout the site)
As I’ve written about previously, I’ve had some good results with prednisone steroids for a few flares in the past in terms of resolving symptoms. That would always be an option. As for a survey on people who have used diet to help with their UC and how things are going afterwards, that’s a great idea! Anecdotaly I can already tell you that many people find relief once they make dietary changes, and like myself have found long periods of remission. But also like myself have ran into some short term flare ups in some cases too.
Best of luck to you once again,
Cool video Adam
Thanks for sharing!
Even cooler to have a GI Doc with Colitis and showing him working hard, looking well and getting on with life!
Have read your website for a year since my diagnosis and this made me comment as it’s one of the best videos and advice/content I’ve seen…trust me I’ve researched millions of sites over the year!
Thanks man and hope you continue to be well.
Thx Rob, much appreciated, and thanks for taking some peeks at the website pages.
Wishing you the best in 2017!
Thanks again Adam for your great web sight.
So many posts to appeciate and give prospective on living with this Dis-Ease. Cool post of the video! And thanks for the further research with the study related to Cancer risk increase, meds, link.
You are just too cool to be making use of the pages and comments in the site, right on Janet! and best to you:)