59 Responses to 157 Patient Ulcerative Colitis Flare Survey Results

  1. JamieIsLame
    JamieIsLame September 21, 2012 at 6:11 pm #

    Sweden represent! going there in May for the Eurovision song contest in Malmo!

    I didn’t really see anything here that I didn’t expect, other than 157 PEOPLE DID THE SURVEY!! WOWZA

    Good work yet again, Adam!

    • Adam
      Adam September 22, 2012 at 12:50 am #

      thx Jaime, and congrats on getting up to Sweden!

  2. Rosanne
    Rosanne September 21, 2012 at 9:51 pm #

    It would be great if some researchers would read these. Stress appears to contribute to flares hands down!!! Thanx for the great job on compiling this Adam!

    • Adam
      Adam September 22, 2012 at 12:51 am #

      Thanks Rosanne, pretty incredible reading all the responses wasn’t it. take care,
      -Adam

  3. Carina September 21, 2012 at 10:01 pm #

    Thanks for the survay, very interesting! JamieIsLame and Adam – welcome to Sweden! Right now we have 9 degrees C and rain, but it sure will be nice in spring and summer! ; ) In the meantime lets just wait for the snow : )

    • Adam
      Adam September 22, 2012 at 12:52 am #

      What’s up Carina,
      So you’re one of the lucky ones up in Sweden!! Lucky you, I’m gonna hit you up when we get up there.
      Take care and glad you enjoyed the survey…now time to find the blue and yellow candles…:)

  4. Grant September 22, 2012 at 12:40 am #

    You want to go to Sweden and Denmark but not Norway? Very disappointed in you Adam and you’ve hurt my feelings!!! :D :D :D

    • Adam
      Adam September 22, 2012 at 12:48 am #

      I’m sorry Grant, don’t take it personal, but I can’t afford the 500 kroner cup of coffee or $20 burgers I’ve heard about up there amigo:)
      No really, for sure Norway is most definitely on the bucket list for sure. Got a good buddy from there and would LOVE to visit someday.

  5. Jo September 22, 2012 at 12:41 am #

    Great read. So many people and yet there are obvious patterns and similarities in cause and what is done to control flares. Reading these things really help me, especially during a flare. Thank you.

    • Adam
      Adam September 22, 2012 at 12:53 am #

      Glad this helped you out Jo, I hope your flare ends soon and you’re back to normal again. It’s gonna happen, flares don’t last forever

  6. Dede September 22, 2012 at 8:05 am #

    This is incredible, Adam. Great job, and I agree that stress plays a major role, and for me too! I would love to help publicize this, and your findings…. Someone said that more people should read this, and I agree wholeheartedly. It will help so many and perhaps I can report on my blog somehow? I was also thinking, as I read through the fantastic responses, that it would be great to have a survey on whether and how exercise helps ease, or possibly even eliminates, flares…. I am writing a guest blog for PLoS Obesity Panacea, and I cannot find any contemporary studies about exercise and IBD.

    Anyway, would appreciate any ideas! And, again, rock on with all the GOOD that you are doing, Adam!

    • Adam
      Adam September 22, 2012 at 12:26 pm #

      Hey Dede,
      Great to hear from you, and I agree, the survey is pretty incredible. Feel free to post a link to this on your awesome site, and tell all the doctors you know about this too::)

      As for exercise and flares, that’s also a great idea for a future survey. I’ll for sure keep that in mind. Might coincide nicely with the UC PUllup Competition that is underway with several of us!
      Take care, and glad you enjoyed the survey!
      -Adam

    • Sarah March 19, 2013 at 8:58 am #

      Exercise was the only thing to pull me out of illness – I have less facial flushing and I wasn’t feeling sick every night at the same time when I exercised. (Until this flare)

  7. w September 22, 2012 at 11:02 am #

    Out of 156 answers, STRESS was mentioned 121 times in Question #4:
    What do you think TRIGGERS your UC flares? Is it always the same thing, or do different things trigger your colitis flares?

    Now, if that doesn’t convince medical professionals and researchers that stress is a factor, I don’t know what will.

    Thanks for putting the survey together and posting the results, Adam.

    • Adam
      Adam September 22, 2012 at 12:14 pm #

      Hey W,

      It is pretty interesting to see “Stress” mentioned so many times among UC’ers.

      It’s also pretty interesting how un-spoken or looked over stress can be when you’re in the exam room talking with your GI about active colitis symptoms. But, like so much of life, trial and error, and the super complex body we all live in has some mysteries that modern day (and old school) science is just beginning to understand.

      That said, Stress and the connections to UC and the immune system really is nothing new. If you (or anybody else is interested), I wrote a post over a year ago based off some of the findings from Dr. John Medina (who is a friggin super cool guy, and super smart brain doctor, who has written the best-seller book Brain Rules) that gets into some of the real details (IMO) about the stress-immune system response. It’s right here:

      https://ihaveuc.com/stress-and-ulcerative-colitis/

      And of course, the previous survey was all about stress and UC and that was pretty interesting, you can read up on that here if you like, the responses seem to pretty much confirm that there is a DEFINITE relationship in some way with many UC’ers:

      https://ihaveuc.com/colitis-and-stress-151-patient-survey-results-part-1/

      take care, and wishing you and all the others with UC the best this weekend. And once again, I’ll preach this now, I do in my own book, and I did last night at a friend’s house over dinner, Read Dr. John Medina’s book “Brain Rules” it’s absolutely amazing and it goes into some seriously cool details about how our brains work and the connection with so much of life…I think its about time to pull it out and give it a read once again.
      Ciao for now W,
      -Adam

  8. Bev September 22, 2012 at 4:14 pm #

    As usual…ABSOLUTELY RIVETING!!

    I love the surveys, Adam. They hit home the fact that alot of us are so different, and yet alot of us are the same.

    Cheers, and thank you for all the hard work. Thank you for all of the time you spend in your life taking care of us and this wonderful site. I don’t know where I would be without it. It keeps me going!! I’m so glad it’s here for all of us.

    You are APPRECIATED Adam!! Right everybody????

    Cheers:):):)

  9. Bev September 22, 2012 at 4:26 pm #

    I forgot to also say, Adam, that the gastro specialist wants me to now have a colonoscopy. I think it’s because I fell off the radar for almost 8 months and also because of the natural way that I attained remisssion. I think she may wants to guinea pig me out. She clainms it’s because I have had UC for over 10 years, and that she wants to do (or I am supposed to have) a different biopsy called a ‘flat’ biopsy for cancer staging, if there is any. I had a ‘polyp’ biopsy the other 4 colonoscopies. I call bullshit, but what the heck do I know. I wish I knew for sure…

    She also tested my inflammation levels and my vitamin D levels. I have NEVER had either of those tests before. She also asked me what strains were in my probiotic, and could I let her know. Is there perhaps some new research about natural remedies coming down the pipes, I wonder? Mmmm. I’m oddly suspicious. No doctor has ever asked me or listened to me about my self treatments. She isso very interested all of a sudden, now that I am med free and in complete remission.

    You are in remission and yours is coming up very very soon. I have scheduled mine for November, but I amy back out because I do not want to upset the proverbial apple cart at this point, you know what I mean? I don’t want any UC to start up again. On the other hand, I have this huge fantasy of being told that there is no sign of UC in my colon at all. That would be the SHIT, man!! Could you imagine?

    I don’t know what to do. My mother and husband figure that they are trying to pull me back into the ‘system’. I certainly don’t want that! Sheesh…what to do…

    Ciao for now!
    Bev:)

    • shelly in maine September 22, 2012 at 4:58 pm #

      Hey Bev,
      Just wanted to let you know that there is supposedly a big research thing going on with CCFA and probiotics. I have even taken a couple of surveys that now include what alternative things you are taking believe it or not!
      As far as the colonoscopy, I too am dreading upsetting my applecart as well and I know I’m due it’s been 2 years and that about how long my GI likes. Anyway, not sure when your last one was, but besides being a guinea pig, it may be time or a cya(cover your-the Dr.’s -ass!!)
      Best and continued applecart! :-) Shelly

      • Bev September 22, 2012 at 7:11 pm #

        You are SO awesome Shelly!!

        Thanks to yourself, and Adam the man, I think I just may now have the courage to go forth, and thus be violated by the doc! After all, this will be the very first time I am not in a flare when I have a colonoscopy, so maybe it will be alright afterwards!

        Thant is also GREAT news about probiotics! I can’t believe that the medical community is actually starting to recognize them. JOY!!

        Take care, and thanks for the encouragement, and the info…I needed it and I do appreciate it all!

        Bev:)

        • joe December 4, 2012 at 7:39 pm #

          i got out a militare hospital about a month and a half ago in wisconsin (usa) and they directed me to a few diet changes that got close to the scd diet & probiotics to take with my meds. they also told me about ccfa, so hopefully that means dos’s are getting better with giving all the options. i have another appointment with a civilian GI in two days, i’ll post how he responds to the herbal stuff.

    • Adam
      Adam September 22, 2012 at 5:15 pm #

      Hey What up Bev!
      Thanks very much for the nice words above, and I feel your dilema pretty hard as far as the reluctance to get violated again. I’m t-minus 6 days, and about a week ago I started losing some sleep over the things that you mentioned and the general “not wanting” to potential disrupt the happy party that’s going on inside, but that’s passed.
      Just like you, I’m wanting to get the inside scoop, (hopefully not too many biopsies) and make darn sure the inside is looking as good as I’m expecting. It’s been 4 years for me since my original anal violation and with the chance that I might be heading out of town for an extended stay east side soon, I want to make sure all is good.

      So, if its any encouragement, I’m now thinking “Bring it on doc” tread lightly in there please, take some snips, and a ton of pictures so I can see the real deal as well. And I’m thinking as well, if the prep/violation doesn’t disrupt the system to much, it’s gonna make me less tripped out the next go around when an inside peek is overdue. I’m giving myself 2-3 days of potential recoup after the violation, but hopefully just a day of gas, got some parties to hit up next weekend right!

      As for the probiotic interests, I’ll tell you what, the GI I met with who’s violating me next week is super duper cool. I can’t say I love him just yet, since I don’t know how gentle he is right…but he’s probably in the love category so far at least. AND, he told me that the GI convention he attended this year down in San Diego with GI’s from all over was heavily dominated with talk about Gut bacteria and topics along those lines, So….you fill in the blanks I guess.

      thx again for the kind words, and you are a rockstar up there in the North!
      -Adam

      • shelly in maine September 22, 2012 at 6:28 pm #

        Awesome survey once again.
        Good luck with the scope…here’s to some healthy, clear pics and continued good health :-)
        Besides you got yourself a serious pull up challenge-you lifting cases of t.p. yet? :-) Shelly

      • Bev September 22, 2012 at 7:15 pm #

        Aww, thanks Adam. As I replied to Shelly, up above, you are both so right about the procedure, and I am now less afraid of the scoping in November. The last push will be when you tell me that yours all went A-OK. Somehow, I just know that it will!

        Oops, it seems that you are now MY guinea pig…lol…sorry bout dat!

        :)

        • shelly in maine September 23, 2012 at 3:36 am #

          You’re awesomely positive Bev!
          Guess you both will be leading the way and being great role models for all us UC’ers since we are supposed to be scoped relatively often because of the UC and our increased risk for cancer. I think the prep is still a zillion times better than it used to be with the nastiest fleet phospho soda…makes me nauseaus to even and think about it plus the enema prep! We’ve come a long way!
          I think my primary care Doc. had a great point about doing things like trying meds., alternative meds., and even colonoscopies while you are feeling better so essentially your rebound should be faster and you’ll heal quicker-plus documentation those alternatives are working! The bonus! :-)
          Best, Shelly

          • Bev September 23, 2012 at 7:22 am #

            Oh yes, the prep is way better now! Thank goodness for that. It was truly dreadful earlier on.

            Again, I need the encouragement. Thank you Shelly!

  10. MALU September 22, 2012 at 4:46 pm #

    Hola!! I absoulutely agree with you Bev. Adam has made a great work with the webpage and the surveys. I found this web in the worse time of my last crisis that started last July and thank God I am recovering right now after megadosis of prednisode, probiotic, mesalazine, mylanta and a change in my diet. I found support, I felt I was not alone in this fight, I learned a lot of the others experience, and the best part was having a lot of laugh with Adam s sense of humor. I never thought I could find the funny side of this disease but I did. We need to learn to laugh more, I think this is the clue. Feeling crappy and depressed does not help at all. !!! a big virtual hug for Adam and all the UCers!!! from sunny and beautiful Asuncion, Paraguay Southamerica…Maria Lourdes, 50 yo., diagnosis at 12 years old. It has been a long fight already but here I am!! Cheers! Saludos!

    • Adam
      Adam September 22, 2012 at 5:21 pm #

      Senora Lourdes,

      Muchas gracias por tu commento.
      Yo recuerdo cuando nosotros escribiremos en el pasado, Y yo quiero hablar mas in el futuro, o si possible, mi familia creo que nosotros necesitamos ir al tu pais.:)

      No se cuando, pero cuando yo voy a tu pais, mucho chistes de colitis todo la dia! Buen idea?
      Pardon mi espanol malo, Si mi profesor de espanol de vente anos en pasado leer estes commentos, probable muy chiste:)

      Buen fin de semana, y muchas gracias por tu commentos!

      hasta la vista, y grande besos para Paraguay!!

      -Adam

      • Bev September 22, 2012 at 7:17 pm #

        Adam…I’m so jealous…you speak/write it so well!

        Show-off…LOL!!!

    • Bev September 22, 2012 at 7:16 pm #

      Right, Malu???

      Abso – f***ing- lutely!!

      You are fantastic, too, Malu!

      Cheers:)

  11. john gerrish September 22, 2012 at 7:45 pm #

    too late for survey ,,but found it very interesting and informative,, Would be most gratefull if i could have some feedback on blood loss in stools,? I have been in “flare “since January 2011,,then diagnosed by colonscopy in November 2011,, Hospitalised in February 2012 ,from April to now have had 12pints of blood transfussed,, Cannot get my blood count above 12,, was 15 before i was unwell ,,the normal is 13 to 18. my toilet visits average 8to 10 per day ,and are always Slurry ,Sludge or liquid,, everyone mentions stress, diet ,and medication ,both natrual and perscibed,which i can relate to on every leval,,but blood loss and it,s replacement ,no mention ???? Am i that ill ,and i don,t know it,, or have not been told ,,.?? Someones comments would be Appreciated..

    • Adam
      Adam September 22, 2012 at 8:01 pm #

      Hey John,

      I’m very sorry about all the blood loss you’ve been experiencing. What are you doing on the treatment side of things? Have you noticed any positive results (even if temporary from anything on the treatment side?)

      And, have you talked to your doctors about being tested for C-diff? C-diff is a nasty addition which you can read up more about on this site or if you just google it, but reason I’m mentioning is that it can lead to blood loss, and symptoms real similar to UC. I came down with C-diff not long after my diagnosis several years ago, and “they” say that its commonly contracted after taking antibiotics, while UC symptoms are active, and after/while in hospital enviornment etc…
      So, might be worth chatting with your doc about if you haven’t already as its pretty nasty but once taken care of its a world of difference. Again just a thought, but you’re comment reminded me of that.

      -Adam

      • john g gerrish. October 5, 2012 at 6:43 am #

        dear adam,, thank you for your response,,i will ask my doctor on monday to check for c,diff.. i am in transfussion clinic so my bloods are monitered,, for further blood transfussions ,,my count last week was 10.4 after 3pints of blood given only 5 days earlier.. my platelets are/were 515 (sign of inflamation /bleeding) been up to 600 max and a “normal” 300 many many weeks ago..When i was first diagnosed aftera colonscopy ,November 2011.I was given 40mg predisolone and 2400mg of mezzavant.. i had an immeadiate response, and was “normal”for 8weeks ,Then my motions became looser /liquid.. Chronic pain and was hospitalised for 10days in February.2012. on morphine every 2hours,the surgeon was called ,and this seemed my only option. was given i.v. meds antbiotics and cortisteroids,, given Azaproprethine? But gave me Shingles.. Also had blood clot on lung from the inactivity in hospital. Been having blood now since April,,always after my blood count go,s down to a place where i become pretty ill.. Like last monday the doctor could have given me another 2 pints ,due to a blood count of 10.4 ,,but we decided to wait another week ,has i “felt “ok to see were my count would be on monday next,,

    • gina October 24, 2012 at 6:32 am #

      John, I was also hospitalized in Feb for 14 days and am still in “blood recovery” I dont get transfusions though. The Dr gave me some iron pills which made things crampy, but it brought up my blood levels from 7 to 12 in a week!!! Owning and working a bar can be very stressful!! Alcohol should be omitted while you are in flare. I have to avoid anything bubbly at all times, but everyone is different. I do 1/2 gatorade 1/2 water all day while i am in these “speacial times” I also do plain white rice, banannas, toast (all gluten/wheat free for me) seems to work really well. I work in yogurt (all natural) for those wonderful probiotics, and eventually work in normal food. I keep a daily doo diary which includes stress levels (what stressed me), foods I ate that day, how many stools and what they looked like, it seems to help because you may forget what day you had the chili and what day you had the hotdog, and which one set you off. I also write down if i doulbled any meds, took away any, Drs visits, any kind of changes, then I can go back and see exactly what the culprit was and how to overcome it or stay away from it completely.
      Hope this helps! Good luck to you!

      • john October 26, 2012 at 5:46 am #

        Dear Gina,, Thank you for you reply/response..I have had 2 iron infussions,,also iron tabs ,both did not agree with me ..End ed up in A/E on 2nd iron transfussion .. Chronic constipation /or kidney stones,,which i also suffer from . I keep a log/diary of EVERYTHING.. by the hour.. looking for ways to improve my contion and quality of life.. My lifestyle seems to be a big problem!! also ,,eating !! Last night was the 1st time i have not have to go to the toilet in the early hours /or after 1/2hours sleep in 12months..!WHY? my last meal yesterday was at lunch time (1.00pm.).i had a SCD MEAL,at 5.00pm apint of welch,s 100%grape juice mixed half and half with water.. at 10.00 1 pint of water. Went to toilet at 7.00 pm and 10.00pm. Got to bed from pub around 1.00am up at 3.00am for pee,, then got up at 8,30am. had to go then ,,with urgency had slight missap ,,very rare ,but does happen ,,BUT NO PAIN or Discomfort. Although ,i felt sick ,which i think was from lack of food. This not ideal ,or even what i want,!! I am over 2stone lighter than my normal weight,my waist size is smaller now than when i was a teenager.. also ,I owned a Gym for 10 years and was a bodybulder ,so being like i am now is very depressing.. To date i have had 14 pints of blood .. the latest 2 pints 2 days ago .. I think i am not bleeding in my poo .. but still need blood ,????? concerned as to why.? My platelets score indicate bleeding/inflamation.(522) normal would be 150 to 250 ish .. only once for a week did i get 300. a few months ago. Seeing a consultant/specialist on monday next. Considering Fecal transfussion.. best wishes john g gerrish

  12. Leeza September 23, 2012 at 6:24 am #

    Great survey results! I agree with almost all the responses.
    I have had challenges with UC since diagnosed in 2005.
    On & off prednisone for years. Currently on prednisone since
    10/11. Exploring Humira next month. Thanks for sharing
    results. Will these be shared with any medical team?

  13. Dede September 23, 2012 at 7:46 am #

    ¡Saludos Amigos! (FYI, I am a beginner Spanish student, and Adam is not only our fearless leader, but he is way smarter than I am and KNOWS Spanish—well, let’s see what Lourdes from Paraguay says….the jury is still out! And Bev, and Shelly in Maine, are all awesome. I wanted to chime in on a cp,e of things…, if I may ;) Bev, I have been in remission for six years…. When I go to my annual at the IBD clinic, the nurses always ask me what I am taking, what I am doing, to stay so healthy. I thnk these people who work in IBD just see so many sick people day in and day out, that they are blown away when we come in with great bloodworm. and clean colonoscopies! Glad to hear that probiotics are finally being studied. I use Ultra Flora powder, and get it from my naturopath. Did you know there are more gut bacteri than human cells??? Yikes!

    Adam. If I may, can I post a link to my blogpost on The Dreaded Colonoscopy? It got picked up by Prevention Magazine, and they actually used my pre-colo recipe…. I prepare by slowly decreasing my solids naturally (upping protein and electroytes with organic chicken or beef broth) in the days PRIOR to drinking the stuff, so when I start the prep, I am clear much sooner, less stress ;)
    I have to go in October, and here’s what I wrote ;) http://livingwithcrohnsandcolitisbook.wordpress.com/2012/07/24/the-dreaded-colonoscopy/

    Hearing from the others on this site makes me less afraid, too! There is always gonna be anxiety about the results, but having a positive attitude is key. My GI is super nice, and very cautious and careful doing the procedure. Last time, he saw some inflammation around my surgery spots, which is to be expected, so I am doing some positive imaging about decreased I flammation before I go for the test!

    John, I don’t like the sound of so much blood….. Pernicious anemia can be really hard to recover from, so you need to eat iron-rich foods, like fish, and if you can tolerate, leafy greens….and take a supplement. The iron supplements make me more constipated, so may be a good thing for you to try?! The other thing you should talk to your doctors about is something called “iron overload,” from ALL the transfusions. that can be serious. Hang in there. My Vitamin B12 was non-existent when I was really sick, and it took one full year of weekly injections to get my blood counts back up. I would encourage you to speak up and work with your hospital team, and have them check for the C-diff, too, like Adam suggested. Are you getting tons of rest? Isn’t there something else they can give you to help get your numbers up? I have herd that this is a common problem with uc-ERs, so maybe there will be some better feedback. I just wanted to write quickly, so you didn’t feel alone!

    LOVE this site!!! Good luck to all my colo-buddies out there, and Adam, I think you are first! Breathe, relax, do some imagining of clear pink tissue colon wall, free of inflammation, polyps and ulcers. Just focus/meditate on the healthy vision of the colon! It works;)

    • shelly in maine September 25, 2012 at 4:46 pm #

      Thanks!
      Great info as usual including the article-i wrote above! :-)

  14. Dede September 23, 2012 at 7:48 am #

    Oops!! I meant bloodWORK!!! Don’t want to scare anybody ;)

  15. Dede September 23, 2012 at 8:04 am #

    This is a good article on colonoscopy prep I wanted to share with you. Better than the more recent one I posted above…. I did tons of research on colonoscopy prep for this story, and I hope it will be helpful!
    http://livingwithcrohnsandcolitisbook.wordpress.com/2010/10/09/colonoscopies-are-not-my-favorite-thing/

    • shelly in maine September 23, 2012 at 10:30 am #

      :-) Awesome post Dede! Very informative for all angles, SCD or not. You always offer up great info.
      Best, Shelly

      • Dede Cummings September 25, 2012 at 5:04 pm #

        Thanks Shelly & Adam, I did SCD for 3 weeks before my surgery, and it is what really got me on the road to recovery! I learned tons by reading Elaine’s book cover to cover…. Thanks for the note about the article, and I will be thinking of everyone during this time of getting colonoscopies, and other people I’ve read about above who are having flares right around now. I read somewhere that the changing seasons brings on flareups, and it is good to address that in terms of getting extra rest and taking supplements. Someone wrote that it is usually too late to address a flare, b/c we all are in denial leading up to the flares, and think they are gonna go away, right?! How about taking a preventative approach: Nip the flare before it starts: back off on foods that may irritate you (tonight roasted chicken for me and steamed veggies—yum!), slow the digestive system down, eat small frequent meals, or snacks instead of big, heavy, rich meals that can slow up the digestive track—there are these hairlike things called villi (http://en.wikipedia.org/wiki/Intestinal_villus) that form the inside of the colon wall, that kind of help move the food down the track (it’s all about motility!) … and we’ve got to keep things calm down there! Vitamin D is showing promising results in aiding Crohn’s/uc patients. I also take probiotics and ground flax seed EVERY NIGHT (this is what I swear by!) … and lots of water.

        Many of us suffer from leaky gut syndrome, and don’t even know it! The SCD is a great approach, probiotics, digestive enzymes (like plant based enzymes in the SCD) really help, Omega 3, multi-vitamin (I use a phyto-nutrient vitamin), for starters. Also, acupuncture helps with liver function, which for us is compromised by having an auto-immune disease…. I got once a month, and love it—i is very relaxing (note; if a child, or you hate needles, ask them to use moxa instead!)

        Don’t forget sleep, gentle yoga stretching (with twists_sit crosslegged, and gently twist right, one hand on your knee, the other on the floor and breathe and twist a bit more; switch your leg cross, and twist left, breathe and twist a bit more_this type of simple yoga literally helps the intestines keep from getting kinked!) Rest, relax, breath… and communicate with others….

        • shelly in maine November 17, 2012 at 3:19 pm #

          Dede,
          AWESOME BOOK! :-)
          I just devoured it home sick gave me the time to take it in while my brain is not on auto pilot after a full day.
          I loved it as much as Adam’s, James Scala’s(my original UC bible, too), BTVC and Tracie Rendino Dalessandro…your book is a great addition to the collection and encompasses the whole body. It’s amazing to me to have access to so much info/people….the internet…and we/they are still uncovering so much with the genes, probiotics, diet, meds.
          As a lifer with UC(30+ years-of diagnosis) I appreciate the info along with your personal experiences. Of course, you are always so informative and thoughtful in your responses on here as well-plus your articles.
          Keep up the amazing work.
          I encourage people to read all those books!
          Thank you, Shelly

    • Adam
      Adam September 23, 2012 at 10:17 pm #

      Great posting Dede. That’s really cool that you put that together for everyone! Thx so much,
      -Adam

      • Dede Cummings December 1, 2012 at 5:09 pm #

        Sorry I have been out the loop, Adam! Was just blogging today about have a bad flare-up…. So nice to have this site and you being a solid presence out there in the uc-land and for me with both uc and Crohn’s….. They want me to start taking 6MP, but I am exploring other treatment options and back on SCD! Hope you are well—ironic, that I was the one who researched colonoscopies and I had a really bad one, and am really sore from all the poking around they did in there! LOL, but am resting a lot! My best to you.

  16. Ade from Malta September 24, 2012 at 2:16 am #

    Hi there!

    Wish I had found out about this survey beforehand to add my own 2 pence.

    I was diagnosed last year with UC and I have been on Mesalazine ever since. The only flare-up I had was when I was when I took Neurofen (silly I know) during a really bad laryngitis. Otherwise I’ve been symptom-free since I started the course.

    Regards,
    Adrian

  17. Lisa OH
    Lisa September 25, 2012 at 6:15 pm #

    Great survey. Since stress & diet seem to be the most common triggers, I’m wondering why counseling & nutrition education are not part of the regular treatment for this disease. And by nutrition education , I mean the benefits others have experienced going gluten-free, SCD & GAPS diet. I know, I know, I know. I’ve heard it from the docs, ‘b/c there is no empirical research to show that ….diets do anything….’ It seems a disservice that docs are not talking about this stuff more with their patients. BUT I am glad this website exists to share others’ experiences w/what works and what doesn’t…Dede, I really like your explanation abt the gut science.

  18. john g gerrish. October 5, 2012 at 7:01 am #

    further,,another common thread of your survey ,,was stress!! and rest!! I own a Bar (pub in uk.) and do not rest . I work every day about 70 hours a week,,Is this a big factor in my inability to get to some sort of normal health sitution.?????

    • Adam
      Adam October 5, 2012 at 8:22 am #

      Hey John,

      You’ve got a real tough question to answer. I’m certain there are many people who have UC and are living a happy/healthy lifestyle with super stresful jobs/lives. But at the same, time, I think its clear that for a real big chunk of us, stress does play a role in colitis symptoms. Exactly how big a role is very debatable and equally hard to come up with any metrics and or formulas. That said, for me personally, I try to reduce stress in the day to day parts of life as much as possible. One example that worked real well for me is based on how I commute to and from work, and throughout the day. I used to drive an hour each way to the area I work, and then for my job I’d be driving around all day making many stops in San Francisco, which can get pretty crazy at times. So, back in May of this year, I stopped all that and its been almost a half year of taking public transportation ALL day, and geeez, let me tell you…BIG difference. No more panic/freak out sessions while driving over the bridge each day, no more fighting for parking spots, no more of that hassle. More walking, more reading everyday, and more relaxing. Of course I don’t know all the ins and outs of your day to day, but if you can think of some things to try out in terms of lifestyle changes that give you more control over situations, that might be something to think about. Again, its not easy, but maybe sittind down with a pen and paper and mapping out your day to day deal might allow you come up with some new ideas on how to get from A to B, or how to get “this” done or “that” done. I wish you the best,
      Adam

  19. Amanda June 27, 2013 at 2:02 pm #

    I have had uc since i was 15 or 16 years of age now 23 and im getting off my Lialda at the end of the month. Has any one else really got off any of there meds for UC? and for good im off them hopeing not to flare up like i did last summer ago i was in the er room for almost like a week and had to go back on my meds for and now i ask my dr and told him im not haveing any issuies of a flare up or nothing anymore and not feeling so sick anymore i feel great and im happy to get off them soon and hopeing to stay off them for my rest of my life..

    • bev June 28, 2013 at 5:31 pm #

      I’ll chime in!!

      I have gotten off meds and have been symptom free for 14 months! I was on asacol for 14 straight years.

      I must stress, however, that I take one ULTIMATE FLORA CRITICAL CARE by RENEWLIFE 50 billion strain probiotic, every day, on an empty stomach, and then no food for at least half an hour…AND…fermented L-glutamine powder…also every day, also on an empty stomach.

      I am convinced these two things will keep me in remission forever!

      Bev

  20. DavidD May 25, 2014 at 12:29 pm #

    I was diagnosed with UC 3 days ago. I am on day 40 with all the symptoms. The worse one is an intense pain in the middle of my abdomen. The doctor gave me a strong painkiller. Is the sharp pain also a common problem with you? I think I can handle going to the bathroom a lot, the bleeding, the big belly and the rest of it but I am concerned about being effective at work given the constant pain.
    Is the sharp pain also a common problem for you?
    Do you take a painkillers every day?
    Thanks

    • Adam
      Adam May 25, 2014 at 1:59 pm #

      Hi David,

      I’m super sorry to hear you’re in such pain right now. And I wish there was a magic bullet that could take that away instantly.

      I most definitely remember sharp pains back in late 2008 and early 2009 when I was severe with my symptoms, and I know many others have commented on that same thing. There was even a time when I was taking some vicodin pain pills that were prescribed for the pain.

      Good news is that the pain won’t go on forever. It’s often a direct correlation between symptoms and how active they are. (And, there’s a good amount of us who get sharp joint pains from other inflammation as well. Can be really painful too)

      Keep your head up, this will pass and you’ll be better again like you remember,
      Adam

  21. DavidD May 26, 2014 at 8:08 pm #

    Thank you Adam. Your words are very encouraging.

  22. Emran July 1, 2014 at 11:28 pm #

    Hi,
    I have been diagnosed with IBD two weeks ago ( UC or crohn’s – doc is not sure). I am on Lialda and was recently put on Uceris. Doc performed following blood tests
    – ESR – higher than normal
    – Vit B12 – higher than normal

    I am not sure why B12 is high. I thought it would be low. I’m scared if I have some other condition as well. Does anyone here have any experience with these tests and what they mean with respect to IBD?

    Doc has also ordered Calprotectin test.

    Lialda has definitely reduced my bowel movements. But I do see a lot of white mucus since I have started taking it.

  23. Dan N August 29, 2014 at 6:38 pm #

    I’ve had UC since i was about 22. I smoked for until 2 years ago before my daughter was born. Every time i quit smoking, 3 weeks later i would flare. But when i did smoke, if i got sick (mucus, coughing..ect) i would flare for 3-4 weeks. That would only happen in the fall when the weather turned. Once i quit smoking, i went to the doctor to get on meds. I look at pharma meds as a bandaid and not natural healing. There’s no way blood transfusions and all these drugs available for UC is going to put a stop to this. Yes, i see that it can help your daily life but i took that stuff for a lil over a year and it barely helped. What helped me was following a low FODMAP diet, cut dairy and get that nasty wheat out of my life. It helped my UC alot, then i knocked the little bit that was left out with a herbal treatment. that put it in “remission” or whatever they say it is. I say it goes away. After it was gone, i didn’t listen to my lifestyle change because i like pepsi alot and i like to drink beers, eat wings..ect.. so, i got a bug a few weeks ago at the peak of my diet fun and i started flaring. my fault for drinking pepsi and all that fun stuff but i went back to my herbal treatment and a few days later its barely a flare, just some diarrhea and a lil blood. But anyways.. hope this helps. I have UC and I refuse to let the doctors give me synthetic drugs when i know herbal combinations work way better. Take advantage of this dis-ease by forcing yourself to a healthier lifestyle.

    marshmallow root
    psyllium
    slippery elm
    camomile tea
    i also use bentonite clay
    it’s healthy, it doesn’t have side effects like synthetic drugs.. it’s just a better alternative.

    good luck!

  24. Diana February 10, 2015 at 6:31 pm #

    I just found this site and I dont feel so alone now. Wow stress is a killer it seems all my illnesses seem to revolve around stressful events, and quitting smoking lol. I became sick with IBD in my late teens it was the big D pain and blood. Went pancolitis a few years later, great GI that worked with me to get it under control..shhh he even recommened I start smoking lightly again since this all started when I quit the first time. It took a while but got it all under control I thought, then years later decided to quit again. And had a nasty flare that lasted 2 years had to go on disability and was set for the operating room. Then I grabbed a pack of cigs because I felt I had nothing to lose and within a week my bleeding had almost stopped and my D was going back to normal formed. I still went 4 or 5 times a day but at least it didnt look like a crime scene.

    Fast forward a few more times I gave up the cigs and had flares I knew then cigs had addicted more than just my lungs and brain. They was something in them that kept UC on a leash, funny cause its the opposite for people with Crohns. I developed Graves disease next stress event when my dad passed away, and 10 years later have now developed another set of autoimmune disorders. I am in the lupus scleroderma crossover disorder group now, but while this was active my UC was gone completely.

    Now that is coming under control, and I am flaring with UC for the first time in years. And I am panicked, and I hope I can get it under control again. I am living alone now, and very rural so an emergency would be very dangerous. One thing that also worked in the past was canned carrots. Cooked canned carrots have an soothing effect on deep ulceration from what I have experienced. And I did some checking into why, there is a document that was published years ago about a certain sugar or protein in carrots that when cooked acts like a sealant or repair fiber on intestinal ulcers.

    So no joke I ate a can of carrots every day when I was sick and it seemed to work for me. Ate them so much I got sick of them lol, so I stopped for about 8 months and started to get the old flare sensations back. Got back on them and now have about 3 servings a week seems to help. Of course i am flaring now because I hit a stress event started eating all kinds of junk and not eating decent at all, plus quit smoking again lol. I hope my old orange friends can help me through this one. I dont care what mainstream medicine says, food/stress/ habits/exposure can all make or break this disease. Here is where I started with carrots.. http://www.ncbi.nlm.nih.gov/pubmed/12244882

    But if you research you can find more up to date stuff like this… http://www.ei-resource.org/articles/candida-and-gut-dysbiosis-articles/intestinal-dysbiosis-and-the-causes-of-disease/

    It becomes monotonous to have to eat the same things all the time, but if it works for even one person with this debilitating disease its worth it. Wish me luck in this new flare, and I hope the best for everyone that has this.

  25. robert m February 11, 2015 at 10:26 am #

    Wow, read all these souls testimonies and 100% relate. Feel for all contributors and stay strong.
    I take Sulfasalazine EC 500mg.
    2 tabs 2xs a day and mercaptopurine (6-mp) 50mg 1 tab 2xs a day. After many other meds failed. Have UC for 4 years now on and off remission. Trust in prayer gets me through.
    Always mental stress before travel and know every spot I can find restroom just incase. Love to all you guys. Again stay strong.:-)

  26. Al Co Haul January 17, 2016 at 9:56 pm #

    IMPORTANT ! Notice all the different reasons ? If people would simply remember that they ALL had absorbed ( one way or other ) ALCOHOL before their flare-ups !

  27. Stephen April 5, 2017 at 2:21 pm #

    Hi All,

    I’ve just been diagnosed. Though it was a “flare” which notified me, I think I’m more on the mild side of the scale currently.

    A huge thank you to everybody that has contributed – truly a God send for me at this moment in time. I’m uncertain about what the future holds (from this perspective) but have resolve to keep pushing and fight against this condition.

    If and when it makes sense, I’ll provide updates so anybody else that has just been diagnosed can see what one person’s journey looks like. There seems to be a lack of consistency across cases, but I hope sharing my perspectives, as you al have, will help somebody one day (as you all massively have for me).

    Thank You

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