Main Points
Here are some main points I think are important for anybody living with UC or for relatives living near colitis, maybe some of this thinking will resonate with you too:
- Remission periods can be very long, or sometimes very short
- We, the UC patients know our bodies real well, and we need to hold ourselves responsible to monitor how we are doing over time
- No matter how you treat your colitis (i happen to use diet), you don’t need to settle for only partly feeling good, great health and happiness is possible, even if you have UC
- When symptoms are present after a remission period, some changes may be needed (maybe just slight changes too)
- If you have a re-boot plan (or some program you use to help fight potential flare ups)…GREAT, if not, its time to develop one
- Put your re-boot plan to use earlier rather than later, as it’s very easy for a super super mild flare to turn into a monster one in just a few days
- It’s always helpful to look at controlling your UC as a challenge, something that you’re excited to overcome (that’s what i told my wife yesterday morning after shooting yesterday’s video)Â And what i’m getting at here is – don’t get down on yourself and all bent out of shape, instead look at your UC symptoms as the oponent and YOU, You are going to be the one to eventually win the game and let UC know who’s really in control here.
- As for doctors and your GI, make sure you trust your doctor. If you don’t trust your doctor, or if you don’t see eye to eye with him or her, spend some time trying to find another one who might suit you better. At the same time, you can’t solely rely on your gastro doctor to fix every single ulcerative colitis related problem that comes up in your life. If that is how you handle your UC right now, I think you’re in for a very hard time. We as UC patients have the ability to learn so much information, facts, details, and survival skills about our disease. Take advantage of the growing knowledge that exists, this will make your UC journey much easier.
In the end, I wish you all the very best with managing your colitis in the coming weeks and months. September and October have proven difficult times for many a UC’ers over the past 5 years since I started this site. UC’ers are heading back to school, some are starting new jobs, others are welcoming new family members to the family(well..I guess that’s always happening year round) but life will go on. For each and everyone of us.
As for me, I’m going to be heading back to school come early September, going to be tuff sitting down at a desk in a classroom once again after nearly a 15 year break, but I’m super pumped at the same time.
And if the past weekend’s softiness of stool run was only a shot over the bow for me to get my eating and drinking a bit more in check, EXCELLENT. And thank you to the colitis gods for keeping me honest. I’m pretty sure I’ve got you back in mind, and back where I want you to be, so let’s be friends once again.
Adam Scheuer
PS:
If you’re wondering what you can do to make this website a better place, do this:
Go to the reviews pages, and write a review on any of the medications you’ve already taken. It takes about a half minute, and here’s the links to the different medications, and supplements, and even my ebooks that I’d love for you to review so others can benefit from your knowledge:
CLICK ANY LINK BELOW and write your reviews (and read what others have already posted to learn more too:):
My Ebooks (Feeling Crappy & Cooking for UC)
(Thank you everyone, once you hit submit to your reviews on the pages above, they get posted very quickly afterwards:)
PSS:
have a great friggin day:)
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.
Adam, I’m so happy to let you and the UC world know that we’ve finally gotten my daughter Rosemarie’s bleeding in check. The funny thing is we aren’t sure what really fixed it. Our naturopath had us try a 15 hour fruit fast (no protein) every other day. She basically sleeps through it, and has a fruit breakfast. We started quercetin and l glutamine. Wish us luck! She starts school today, 5th grade. Good luck to you in your education endeavors! Thankyou Adam and God bless!
Great to hear Rosemarie’s bleeding is under control and she’s turning the corner! Nothing like some good news to start the day:) Thanks so much for the update and best to you and your family,
-Adam
It’s interesting that you think of your colitis as an opponent. I do the same thing. It may sound counter-productive, in a way, because we are supposedly supposed to be all Zen and meditative and stuff to help our gut settle down. That may work for some people, and that’s great, but doesn’t seem to work for me. I definitely try not to get all panicked about it, but I also know I have to counter attack! :)
I am having iron infusions now (couldn’t tolerate ANY oral iron supps), and even though it’s all intravenous, the iron kicks my colon’s butt.( wait….what?) Was doing pretty well before these infusions, and hopefully I will get back to less symptoms (not remission, but manageable on just asacol), soon.
Thanks for the videos Adam! Keep em coming, please. :) One question though: Where’s your Lucky shirt? Non-lucky-shirt videos are….”unnatural”… ;) j/k
Kelly…I just have to say that I also can not tolerate any oral iron…until now! I take IRONSMART, which is a liquid elemental iron that tastes like caramel. It’s really sweet, but it’s easy to take and for the first time ever…it does not make me nauseated at all!!
I had two iron infusions….and they never lasted…I will likely always have to take iron and this product is fabulous, I promise!
:)
Bev, Thanks for the tip on the iron. I don’t think I will try anymore oral supps. I even reacted badly, GI-wise, after the first dose of IV iron (Ferrlicet). They switched to Venofer, and although I still notice a reaction, I have not had anything remotely as bad as the Ferrlicet. I will find out if the infusions are working when I get labs next month. (I get monthly labs to monitor my prograf level and liver numbers–had a transplant in Oct. of 2013 due to PSC). Hopefully these infusions will fill my tank. :) The docs don’t know why I’m anemic. Not losing blood through stool, so maybe I’m not absorbing it. That’s a whole new can of worms, anyway.
Just fighting the UC and enjoying my “new” liver. So life is pretty good, really. I like the way Adam keeps it light, even though the subject matter is far from it. I think we gotta laugh at ourselves once in a while, or go crazy.
For sure!
:)
What up Kelly!! Great to see Bev giving you some iron ideas:)) (Bev, you be a rocker:)
I still have the Lucky Shirt, and I’ll bust out the old greeny for you in the next video:) Glad someone likes looking at that one:)) take care, Adam
You said it Adam, it’s all about realizing and knowing that you can control UC if and when you have to.
It never even occurs to me to go running to the doctor at all any more, at the first sing of a flare, and that’s a pretty wonderful thing! Nor do I freak out or get down or depressed, which I always used to do when things went awry…like when I saw blood, or when things got loose. It feels the best to feel so powerful in myself. I think to myself…oh well…here we go…time to get serious and heal myself!
I am back to remission again, after a fairly bad August. I think that the extreme heat (which I do not like at all), cherry tomatoes, and a bit of stress from company that I weren’t all that fond of…lol…all contributed to the flare. I took it a day at a time, and now, all is well once again in Bev-ville.
Lastly, Adam…you are awesome! And human…even tho we all think you are a super hero…lol!! Rock on my friend…rock on!!
:)
Hey Bev, great news! Ah, it is always a battle…just wanted out to know it has been up and down and up and down and again with the ear thing…starting to thing Spring and Fall allergies as I’ve gotten older! More food for thought…looking forward to the cooler weather and we’re back to school and the petri dish!
Be well! :-)
Hey Shelly -girl!!
It IS always a battle…love how you put it…grim reaper UC…for sure! It is always lurking just waiting to present itself.
I try so hard to be vigilant, and then something ELSE causes it to flare, right?! It’s always different…yet always there. Ugh.
You stay well as well…lol :)
I agree Bev. Adam is a saviour. Its amazing to feel some control. Im afraid yet to cpme off the meds until I knpw my pneumonia is gone. But I hope to start cutting down in the next month.
Good luck and hope things work out for you.
Aine
Agreed on everything!
I know the fear that comes with deciding to stop meds. I have been there. Just know that you can NEVER just abruptly stop prednisone…you must wean off of it gradually.
Thank you Aine…I wish the same for you:)
Yo Adam…don’t forget about your stress factor…lots of changes in your life including diet/foods. We are all fierce Colitis Warriors…never give up! Damn Grimm ReaperUC…he’s always there! (Can’t watch the videos yet…boonies of Maine internet!)
Anyway, do your thing…you know I always say UC is a war and we just gotta keep winning the battles.
Healthy Thoughts, Stay positive as always and as you always say…there is a light at the end of the UC tunnel! (Unless ofcourse it is a train!! Had a cartoon of that!) And speaking of cartoons…lovin’ those…missed them!
Be well! :-) Best, Shelly
What up Shelly,
Gonna need to talk to the mainers runnign the internet, too many good videos to be a watching on youtube (FBI Files, Almost Got Away with it Full Episodes:))))) come on maine internet folks:))
Anyways, yeah for sure with the battling. Good news, all back to normal, its Thursday morning out here and feeling just fine. Laid off the coffee until the afternoon the past two days. Dropped the fruit smoothies completely Tuesday and Wednesday. And made BBQ chicken with some basic spices (NO BBQ SAUCE of course) and had some egg breakfasts and some soup and more chicken past few days. Basically my basic going back to basics style chow. ANd all good. So….(think its gonna be cool to have a few Vodka rocks this weekend at the 50th B-day party of Milan in Miletin, Czech…:))
Wishing you the best Shelly,
-Adam
Should’ve read this weeks ago. Now I’m in the hospital being pumped with drugs by a doctor I don’t trust. :(
Hang in there Nikki, we’re all pulling for you here to get well and out of there soon:)
Hello,
New here. Browsing the Web and came across your page. My 13 year old daughter was diagnosed with UC a week ago and I’m going insane. She’s loss 6 pounds in a matter of 3 wks. She’s also been experiencing these terrible headaches. I’m not sure if it’s due to the Lialda or the UC. Do you have any advice about medication and a diet plan for her; she’s so young it kills me that she’s going through this :(
Hi Kiana,
Definitely let your GI know about the headaches. Hard to say what’s its from, although in all of the surveys we’ve ran over the years, headaches have not been a common theme in terms of top 10 symptoms people complain about related to UC. People have mentioned, but relatively rarely. Much more common to be a side effect of medications. As for diet, there’s plenty of information on the site, I follow a certain diet you can read about here: https://ihaveuc.com/the-diet
Adam I found an article about increasing supplement of B1… Have tried all the other B’s except this “1”. Anyways it says it helps with fatigue due to colitis, here is the link:
http://naturalgrocers.com/nutrition/vitamin-b1-new-treatment-ulcerative-colitis-and-crohn-s-disease