So traditionally, the fall and winter times have been the hardest times of the year for me and my ulcerative colitis. I can’t really say that I remember a flare up coming on during the summer months. But…maybe there was one that I just don’t remember since 2008(when I got the UC diagnosis).
Either way, the winter time is coming really soon. Right now, I’m in the Czech Republic living once again and it gets dark at 4:30 pm, cold as the opposite of hell nearly all day, and barely any sunlight. No joke about the sunlight, until Friday, it was 13 days of overcast grey with zero direct sunlight. But, I know it is not just me. And unfortunately, there are alot of UC’ers who are also in the middle of active nasty flare ups right now. That is 100% beyond a shadow of a doubt zero fun, scary, not even close what you want to be dealing with during the holiday season (or any season for that matter), and hard to explain to some family and friends since nobody knows what a UC flare is like as well as a UC’er. So with that said, I can’t sit here and complain…yet.
My health has been as close to amazing as I can remember, and I’m going back well over a decade in review when I say that. Definitely I don’t remember feeling this good since my diagnosis. But although there are over 200 stories of mine on this website since (you can read those here if you wish), it might help to explain how I score “feeling good” and what types of metrics I use to evaluate that. Because I’m pretty sure we all have different metrics for deciding “how we are feeling”. And if you just are getting out of a nasty 10-20 times a day flare… getting down to 3-4 times a day in the toilet might seem like a major win…
So, here is how I score the “how are you feeling?”
- Sleep the past several weeks? (10 possible points)
- Sleeping through the night, and feeling rested in the morning (+10 points)
- OR… Not. maybe because instead of sleeping thru the night… waking up several times a night, difficulty falling asleep, not rested in the morning ( 0 points)
- Regular with the bowel movements the past few weeks?
- Yes, 1-2 day and similar times (+10 points)
- No, all over the place with timing, can’t depend on it (0 points)
- Stool Check the past several weeks on average
- Hard or darn near hard (+10 points)
- Nope, not hard, soft and scatter poops often, or some other variation but not hard or darn near… ( 0 points)
- Happiness when falling asleep (+20 points)
- 9 out 10 past nights fall asleep with happy thoughts in the head (+20 points)
- Too often falling asleep with other than happy thoughts (0 points)
So that would be a total of 50 possible points. Right now, I’m at the 50 out of 50. And I’m super happy about this, and I know it can change very quickly if I’m not careful. And unfortunately, I can be as careful as can be, and it can still go to hell in a matter of days. That’s the reality, but, even if it gets ugly and go sideways or backwards, it can also return to the happy state. That’s the nature of our disease, and that seems to be the nature of so much else, at least for me.
What’s also interesting, is we can all have our own unique measurements of what “feeling good” is. And no doctor, friend, parent, or anybody else can say you are wrong… Nope, you can decide that one. Always. When you are a UC’er and you are feeling good, that’s is a great day. Period.
Best to all of you, especially if you are in the northern hemisphere and have traditionally have a tuff time with these months and the season change, and especially if you are also dealing with covid related tuff times, and MOST especially if you are in a difficult flare up right now while you’re reading this post.
It is hard to think of too many things in the world that are worse than an ulcerative colitis flare up, but as someone who has suffered through several of some super whale killings in the toilet bowl flares, I can say for sure that they don’t last forever. And sooner than you think they will be overcome by you. And that will for sure make you feel good once you are out of that.
For the American’s celebrating Thanksgiving this coming week, enjoy yourself and perhaps your family and friends if they are near. I’m not going to be doing a traditional turkey bird night this year, but maybe a chicken bird at home (in frigid Prague). WIshing I could be on the other side of the Atlantic with the fam and friends, but it just don’t always work out. So enjoy if you got it.
Thanks for reading,
Adam
(if you are interested in some more stories and UC related conversations, you can join the iHaveUC newsletter 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.
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I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
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Thanks for checking in Adam. I am so happy that you continue to be well. I too am finally feeling about a 40 out of 50. I was diagnosed with UC over 10 years ago and have gone through so many treatments. Last May I had decided to talk to a surgeon about removing my colon. But I decided to try one last medicine and I was done. Finally, am happy to say that for me Xeljanz has been my miracle. I now have a quiet stomach, regular bowel movements, and can sleep all night. I know it can come back at any time, so I am eating more greens and taking vitamins and fiber in my diet. It stays constantly in the back of my mind always. Blessings to you and your family!
Yes , Xeljansz has worked for me too . Solid now for close to 3 months. Thats after a very bad flare up. I’m hoping it continues to work. Sometimes I forget that I had UC and eat anything. But generally try to be careful. Drinking kefir and also eating some saur kraut. Trying to avoid junk food and too much bread/wheat priducts
Hi Mary,
Thank you so much for checking in and letting us know how you are doing. And that is some really great news for you about Xeljanz! I remember posting a news story about that when it was released several years ago. And, I just checked the page and noticed that there are quite a few comments on the medication but not a single review yet. So….if you want to do me and the rest of the UC’ers a huge favor, please post a review on this page on how its going for you. Sounds like a five star review…but that’s up to you. here’s that link: https://www.ihaveuc.com/xeljanz-tofacitinib-medication-for-ulcerative-colitis/
I hope you can get to the 50/50 mark by the new year, and I’m sure you can.
Thx again for writing, and thanks for being a part of the site.
-Adam
Thanks, Adam! I like your fifty point happiness scale. You are the first person I’ve see to actually quantify happiness, and I think it makes a lot of sense. I’m glad to say I’m at 50 out of 50 these days too. I owe it all to Entyvio. I have to say that is really a miracle drug. And it didn’t even take long to take effect. I started feeling better the very day after my first infusion. Now it’s just an hour with a needle in my arm once every eight weeks. Small price to pay for happiness. I’ve been dealing with UC for about seventeen years, and had many different treatments, but this one has worked longer and better than any of the others. Take care, and stay healthy!
Me too! Entyvio has been a Godsend. I have had chronic Ulcerative Colitis for about 26 years and for the past 3 years I have been getting Entyvio infusions and feeling great. No other medicine worked well all those years. Best wishes!
Wow, great to hear Mark that you’re getting awesome results as well as Jake with Entyvio! thx for chiming in and best to you with continued success!
How goes Jake,
Thank you for sharing how its going with you. And I’m glad you like the happiness scale. You know, there is an old high school friend of mine who is very active on social media, and he has started grading on a scale just about anything he reads or writes…(literally everything…i.e.: -2 points for mentioning this… +4 for toasting your tortillas on your tacos, – 3 for using this mustard compared to that…) and I thought maybe some variation of that might click with some folks….You never know these days.
But for you, that is fabulous news that you’ve found something that’s working wonders after 17 years on the UC wagon. very very happy to hear this, and as I’m just starting to read through the comments people like you have written on this posting, it seems that both you and Mary (the first 2 comments I’ve read so far) are both super happy with 2 separate ulcerative colitis maintenance meds. Great. Have you also checked out the Entyvio reviews page to add yours:)? I just skipped through the first two pages of reviews, there’s about 67 total reviews to date so my bad if your’s is already there. Seems like quite a few people have had similar success as you. All good news. here’s that link: https://www.ihaveuc.com/new-ulcerative-colitis-medication-vedolizumab/
Thx again and best to you this holiday season.
-Adam
Thanks Adam. I also like your feel good scale.!I’m happy to say that I’m rating myself at 50 also and attribute it to getting enough sleep, being physically active and following the SCD diet which has made me feel normal since starting it 10 years ago . This regimen works far better for me. I’ve had moderate to severe UC for 44 years, hospitalized twice , failed Remacaide and Entyvio.
Wow Elinor,
Great to hear the 50/50 report coming from you. And 44 years of severe ulcerative colitis, that is quite some time, I’m sure you have some incredible UC stories to share indeed. Best to you with keeping up the diet and following the SCD principles. 10 years is a long go at it, and I’m sure glad you are seeing the benefits that a diet change can provide many of the UC tribe.
Thanks for sharing Elinor and happy holidays to you and your family,
-Adam
Hi Adam! As Elinor, I believe in the SCD, and continue to follow it fairly religiously. That said, I can “cheat” here and there, and generally don’t have detrimental results. I make my own yogurt (using YoGourmet starter, as recommended by the SCD) and have it for breakfast with fruit daily; that adds a lot of good flora to my gut. I do have to use Rowasa (mesalamine) enemas every third night (my UC is only in my colon) but it’s doable, and I’ll join Adam in rating myself at 50.
Eat well, keep active; that’s my motto — 18 years now with UC.
Well how cool to see yet another comment from Mrs. Barnby, (MY 12th Grade AP English Teacher, or maybe it was 11th grade at the good old Menlo Atherton High School!!!) What up Mrs. Barnby! Been…oh woow, nearly 25 years sine I was in that classroom. And, although I was not your best student, I am your biggest fan.
Come on now folks…how crazy to stay in touch with your high school English Teacher via a UC website…pretty cool.
And Nancy, way cool to hear you are feeling good still. And glad to see you are as well doing well with keeping up the SCD principles.
For all those who might not heard the new old news, Nancy posted a famous posting here on iHaveUC way back on April 20, 2010 which detailed the “daily bread” recipe that she makes. It is a specific carbohydrate legal style bread, and you can read all about it here; https://www.ihaveuc.com/my-daily-bread-recipe-scd-legal/
Thank you so much once again Nancy for writing in letting us know how you are doing.
Best best to you,
Adam
Hello there , good to hear from you Adam !
First thing I noticed besides that you’re looking healthy , is that you have bread! .Bread is a no for me, unless it’s sourdough then I seem to tolerate it. I too have been doing the water kefir & making 24 hr yogurt , and when I’m on the run I grab a kombucha for what ails me. Since my daughter found you and all of your wonderful info I’ve been on the mend . A few yrs of Remicade in the books , would RLLY like to just try diet to control my UC …so tired of the side effects. If you have any insight on when a person might know when to get off Rx and give it a go I’d love to know.
Be well all ! And again thank you Adam for this wonderful service !
Hi Susan,
Thanks for sharing and commenting in, and glad you are well and two thumbs up to your daughter!
Yep, you did spot the bread in the picture. And surprisingly, I’ve been doing fine on the non-white breads that are common out here in the Central Europe land of Czechia… I am not even sure where to find common US style white bread, although I’m sure it has invaded some stores around. But anyways, I do not know why, but somehow my body has changed I believe as I was not able to eat any breads for years and years no matter what color. I’m really starting to wonder if the 61 weeks I spent down in Australia from February 2020 to April 2021 had something to do with some overall system change…tons of sunlight…lots of natural water…I have no clue…
But to your question about when to stop or think about stopping medications. That is a very good but very very difficult question to begin to answer as you know. I would start by talking to your doctor. See what doc has to say. I’m guessing the answer will be along the lines of, “if you stop, you will probably have a flare up..”… but perhaps doc has another angle.
For me it was relatively straight forward. The medications I was taking (Humira and before Remicade) were giving me such side effects, which I’ve written about extensively many years ago on this site in various stories), that I was simply not willing to take them anymore. Side effects were so bad they were worse than the UC symptoms which were severe and bloody and awful…so yeah, side effects were worse. So i stopped, was getting ready for surgery, luckily met another UC’er who was treating with diet, and that was that for me. But, its not so simple for others. Your case sounds like one.
You know, so much in this game of UC management can be looked at as a cost/benefit equation. But at the end of the day, the UC tries to have the upper hand by dangling over our heads the thought of a “future possible nasty flare”. and then to top it off, the medications if they are seeming to work can dangle that as well if we try or think or actually stop them. Yet it is not ever possible to 100% conclude what caused what….Absolute mind you know what.
I”m sorry Susan, I don’t have a great answer for you here. I think you need to make the decision no matter what, and do what simply feels right. You will ultimately make the best decision. I think the same is true for so many UC’ers, some who have commented on this post with trying a new medications and eventually it ends up being their miracle….we all be different. best to you,
-Adam
Hi Adam… brilliant news that you’re feeling on top form despite the lack of sunshine. Loving the matrix you’ve produced as a benchmark which we can all use – many thanks. At the moment I’m about 30 on the scale. Working on a better sleep pattern which will hopefully reflect on a higher score. Currently taking Symprove (probiotic) and mezalazine granules daily. Also mezalazine suppositories a couple of times a week. SCD diet follower. Wishing you continued good health and happy days ahead.
Hi Maureen,
Thank you for checking in and letting us know how you are feeling. HOping you can bump the scale up by the new year and start of 2022 with some great happiness and minimal UC worries.
THank you so much for commenting,
Adam
How cool you are living in the Czech Republic! And from the looks of it in a cozy cabin. Would love to hear more about what brings you there and your adventures. I am currently doing amazing with my UC. I’ve been doing the SCD for about 4 years, that gave me 75% relief but now I’m feeling even better after becoming a Reiki master and Energy healer I was able to focus my learned skills on my own healing. This is something I highly recommend to anyone suffering IBD or any autoimmune condition. Taking care of mind/body and spirit is key. Best wishes to you and a Happy Thanksgiving to anyone who celebrates.
Hey There Liz,
Thanks for writing in and wow, had no clue we have a Reiki Master among us!! Way cool.
And, perhaps you can share a story about Reiki and how you feel it can help the other UC’ers (and selfishly me..:) in the future. Would be nice to hear more on this from a UC’er too!
As for me and CZ, well…i’ve been living the past 6 out of 8 years here, my wife’s from this country and that is the main reason for being here. But, yep, the cozy cabin life is definitely for me, especially when the capital city is busting out awful covid numbers on a daily basis and hospitals are reaching their limits once again…(the not so cool part of living in a not so much vaccinated country)..
But…let’s see…yeah, I will try to put in the mix some more Czech living posts or at least pictures. I have started doing some once in a while live videos on my youtube channel where I’m basically talking to the camera and walking around Prague…you might get a kick out of those… OR….we could do a video chat together someday and talk abotu Reiki and I’m sure other UC’ers would like to see that. You let me know, my email is ihaveuc@ihaveuc.com. and you can hit me up whenever!
–Adam
My daughter is 19 and is just trying to get out of a flare. She was diagnosed ab 6 months ago. Her bleeding and cramping is better but she has been getting swollen eye lids and then reddish rash around her mouth, nose and on her throat. Do others w UC get this and What do u all do for relief
Hi Deanna,
I have not heard of those symptoms before as ulcerative colitis related symptoms. As Mark suggested below, I would definitely consult a doctor about this.
I’m sorry, I have UC for well over 25 years but unfortunately never ran into this. I would definitely consult her gastroenterologist. Best wishes.