832 Person Colitis Question and Answer Survey

Below are all the questions and responses listed as a percent (%) from the 832 people who took part in the survey.

MAKE SURE to check out the pictures that about 60 people sent in below as well…just to make sure you know what some photo taking colitis people look like:)

AND, a special thanks to my own Gastro doctor (Dr. Neil Stollman) who was super cool to once again take part in a iHaveUC project and share his own answers.  You can see his answers along with his comments (when he added them) next to his picture below each question from the survey.

Is salad bad for someone with colitis?

  • 45% – No
  • 29% – Yes
  • 26% – Not Sure

Dr. Neil Stollman MD GastroenterologistNot Sure: “different patients with colitis have different dietary sensitivities; there’s certainly no worry that salad (or Chinese food, or dried fruit etc) is ‘harmful’ to their disease process, and won’t cause a flare, but many people have worse symptoms, and the simplest and most accurate ‘answer’, in my opinion, is that there’s really NO obligate dietary restrictions in colitis, but patients need to be mindful of how their body reacts to salad (Chinese, dried fruit etc) and if a certain kind / type of food reliably causes increased symptoms, then of course avoid, but if not, go for it!”

Can someone with colitis eat Chinese food?

  • 61% – Yes
  • 21% – Not Sure
  • 18% – No

Dr. Neil Stollman MD GastroenterologistNot Sure: “see Q1″

 

 

Can someone with colitis eat dried fruit?

  • 57% – Yes
  • 23% – Not sure
  • 20% – No

Dr. Neil Stollman MD GastroenterologistNot Sure:  “see Q1. recognize that dried fruit can cause increased BMs”

 

 

Can someone with colitis visit India?

  • 60% – Yes
  • 32% – Not sure
  • 8% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Is drinking alcohol bad for someone with colitis?

  • 63% – Yes
  • 20% – Not sure
  • 17% – No

Dr. Neil Stollman MD GastroenterologistNot Sure:  “see Q1″

 

 

Does someone with colitis need to take medicine forever?

  • 46% – No
  • 32% – Yes
  • 22% – Not sure

Dr. Neil Stollman MD GastroenterologistNot Sure:  “most do, based on fact that most will relapse (eventually, although there are rare exceptions) and many meds, particularly 5-ASA / mesalamine, has good evidence that it lowers frequency and severity of relapse.”

 

 

Can someone live without a colon?

  • 86% – Yes
  • 12% – Not sure
  • 2% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can someone get pregnant and have ulcerative colitis?

  • 93% – Yes
  • 7% – Not sure

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can someone with uc live a normal life?

  • 79% – Yes
  • 11% – Not sure
  • 10% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can changing my diet get me off meds for uc?

  • 43% – Not sure
  • 39% – Yes
  • 17% – No

Dr. Neil Stollman MD GastroenterologistNot Sure:  “not usually, but occasionally”

 

 

Can colitis affect my joints?

  • 87% – Yes
  • 12% – Not sure
  • 2% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can i have a colonoscopy while on steroids?

  • 57% – Yes
  • 40% – Not sure
  • 3% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can my son have colitis if his dad has it?

  • 71% – Yes
  • 23% – Not sure
  • 6% – No

Dr. Neil Stollman MD GastroenterologistYes:  “there is familial clustering”

 

 

Can people with colitis work in law enforcement?

  • 73% – Yes
  • 24% – Not sure
  • 3% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can prednisone make you do irrational things?

  • 63% – Yes
  • 27% – Not sure
  • 10% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can the colon be healed?

  • 64% – Yes
  • 25% – Not sure
  • 12% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can ulcerative colitis cause night sweats?

  • 58% – Yes
  • 35% – Not sure
  • 7% – No

Dr. Neil Stollman MD GastroenterologistYes

 

 

Can you get addicted to prednisone?

  • 45% – Not sure
  • 34% – Yes
  • 21% – No

Dr. Neil Stollman MD GastroenterologistNot Sure:  “not in the most strict sense, like opiates, where the body craves and has withdrawal, but patients frequently get to really like their steroids, because they feel more ‘up’ and energetic and of course, if can improve their colitis, all of which is highly positively reinforcing, so then yes, they ‘want’ their steroids. Its their docs job to help them understand the long-term negative trade-offs that accompany this short term benefit, and plan accordingly.”

 

Below are the pictures that were submitted by some of the participants of the survey.(Thanks to everyone who upload your photos, we’ve got some super cool looking folks here with UC!)

**If you have any comments you’d like to add regarding any of the questions above, please feel free to do so in the comment section below**

Thank you to ALL of the participants who participated in the Q&A Survey.  There was not only a record number of participants, but also a record number of countries represented in the answers below. (45 countries, pretty incredible, viva Puerto Rico!!, Puerto Rico es un pais?)

  • United States
  • United Kingdom
  • Canada
  • Australia
  • Ireland
  • South Africa
  • India
  • New Zealand
  • Puerto Rico
  • Iran, Islamic Republic of
  • Sweden
  • Japan
  • Portugal
  • Italy
  • Ghana
  • Philippines
  • Pakistan
  • Peru
  • Norway
  • Cayman Islands
  • Latvia
  • Poland
  • Russia
  • Turkey
  • Trinidad and Tobago
  • Slovakia
  • Slovenia
  • Korea, Republic of
  • Saudi Arabia
  • Saint Vincent and the Grenadines
  • Estonia
  • Germany
  • Denmark
  • Czech Republic
  • Colombia
  • Belgium
  • Bahamas
  • Spain
  • Ethiopia
  • Israel
  • Iceland
  • Indonesia
  • Hong Kong
  • Fiji
  • Kenya

There will be more surveys to come in the future, and everyone who has joined the free newsletter will most definitely get notifications when they take place.

Thank you again for your participation, like so much of this website and life in general, there are no right or wrong answers.  My hopes and goals with this survey was to allow everyone to gain a better idea of what a large groups feels/thinks about some basic colitis related questions that common UC’ers have.  All of these questions have been asked from people and family members living with UC.

Lastly, if you are part of the newsletter group and want to see more of these types of surveys in the future, please let me know below in the comment section.  This particular type of colitis survey is much easier for me to manage on a large scale with hundreds of participants compared to the surveys in the past where everyone is able to write personalized comments.  That said, if you would much rather have the ability to leave your own comments for each question, that’s fine too, just let me know.

Best regards,

Adam Scheuer





48 Responses to “832 Person Colitis Question and Answer Survey”

  1. michelleSeptember 7, 2013 at 7:20 am #

    It would be good if you had put the correct answer next to the questions…

    • AdamSeptember 7, 2013 at 8:20 am #

      hi Michelle,

      Thanks so much for your feedback. The reality is that there’s not always going to be a “correct’ answer for questions about our disease. Just like there’s no 1 treatment that works for everyone. One of the main goals of the survey was to allow people like you and I with UC, to see what a large group of our peers felt about certain questions.

      That said, I will for sure try to do a better job of providing some info(or links) to stories that bring up the different topics mentioned next to questions in the future.

      For example, there’s plenty of stories about “pregnancy” and “prednisone” and even stories about UC’ers in the military, and people in India with UC on the site, which could probably paint some color to some of the questions.

      Thanks again for the feedback,
      -Adam

  2. bevSeptember 7, 2013 at 7:38 am #

    Thanks Adam!

    Great pics everyone!

    • AdamSeptember 7, 2013 at 8:22 am #

      yeah Bev,

      (I didn’t know Santa had UC or married a UC’er:)) pretty cool though eh! (you know what “eh” means right”)

      • bevSeptember 7, 2013 at 8:31 am #

        You are SO funny Adam…ay!!

        • AdamSeptember 7, 2013 at 8:31 am #

          so i don’t have the correct canandian “ay” figured out just yet…thx for the info bev

          • bevSeptember 7, 2013 at 8:32 am #

            :)

  3. mezySeptember 7, 2013 at 7:43 am #

    Michelle – but there might not be any correct answers. I’d imagine each answer would change depending on the person/colitis sufferer.

    • AdamSeptember 7, 2013 at 8:23 am #

      I think you hit it on the head there Mezy.

  4. Don
    Don MakowskiSeptember 7, 2013 at 8:01 am #

    Great survey Adam! I agree with the results. One question I would have liked to have seen. Do you think UC is being studied enough by the medical community? I’ll bet that would have been 99% – NO!
    Keep up the god work and know we all appreciate what you do!
    Good health!
    Don

    • AdamSeptember 7, 2013 at 10:44 am #

      What up big D,

      I think you’re right regarding the study stuff, but, on the bright side, its come a long way as well. Of course the more the merrier. Glad you be appreciating and enjoying this stuff, and thanks bigtime for being a part of el siteo.
      hasta la,
      adam

  5. Catherine WestSeptember 7, 2013 at 8:03 am #

    Makes you realize even though we all have the same (somewhat same) thing, that it does affect us all differently. Thanks for the survey and fun pictures!

    • AdamSeptember 7, 2013 at 8:24 am #

      Exactamente CW!
      great realization we all should keep in mind

  6. Brookie G
    Brooke GramlingSeptember 7, 2013 at 8:10 am #

    LOVE the representation from all the countries~

    • AdamSeptember 7, 2013 at 8:26 am #

      What up Brooke (great to see you again:)

      Seriously, that makes my day reading your comment (and hpefully the same to others here).

      Wouldn’t this disease be a bit lame if it was only people in “our” country or town or city dealing with it.

      ***And whoever’s got UC in St. Vincent and the Grenadines….when the heck can I come over??? Right Brooke:)

      best to you,
      Adam

  7. NoelleSeptember 7, 2013 at 8:14 am #

    I was hoping to see the correct answers next to the survey answers. It would be a test of what we think we know and a way to educate this community with resources to back it up.

    • AdamSeptember 7, 2013 at 8:47 am #

      Hi Noelle,

      I just emailed my GI doctor who has done a Q&A session on the site before asking if he’d be interested in answering the questions from his point of view (with including comments).

      NO GUARUNTEES if he’ll take me up on it, but if he does, i’ll post his answers to the newsletter in the future. Hopefully he’s not too busy and will hook the iHaveUC site up once again.

      -Adam

      • AdamSeptember 18, 2013 at 8:35 am #

        Thx Noelle:)

        So pumped this is buen info for ya:). More to come

  8. Mary S
    MarySeptember 7, 2013 at 9:31 am #

    Thanks for the great survey Adam! Next time I’ll add my pic.

    Judging from the diversity of respondents, it seems that UC doesn’t discriminate with regard to sex or ethnic background, and isn’t limited to any one part of the world. Just imagine how many people worldwide have UC. Makes you realize you’re not alone in this.

    • Sherry C.September 8, 2013 at 11:14 pm #

      Does UC affect one sex-race- more than others ?

  9. Sharon RyanSeptember 7, 2013 at 1:03 pm #

    Hi Adam,

    Great survey. I love doing your surveys because sometimes questions come up that I never would have thought of !
    Its great to see so many countries represented….but im not surprised Adam your site is amazing.

    Fantastic work as usual.

    Stay Healthy
    Sharon

    • AdamSeptember 8, 2013 at 4:26 am #

      Thanks Sharon, thanks so much.

      It is indeed super cool to see the world take control of getting active with regards to UC.

      One thing to remember is that this website may be cool and interesting or whatever you want to call it, but without participation from the thousands who use it each month, it would be worthless. And very BOOOOORING. So thank you to everyone who reads, writes, comments, and enjoys the site. -Adam :)

  10. Trisha
    Trisha CollinsSeptember 7, 2013 at 1:18 pm #

    Adam ,
    You have had such a positive effect on my life! I immediately open emails I see from this site. Just recently I found a friend was recently diagnosed and referred him to the site because you and my fellow UCer’s alway have great feedback with a touch of humor. This illness is diferent for everyone and diet is a huge factor. It’s as diverse as the people in the UC world!

    My wedding is in less than a month and I am not letting UC take that from me. Even if I have to invest in some sequined wedding diapers!

    • AdamSeptember 8, 2013 at 4:28 am #

      Yo YO Trisha,

      Your comment makes my day, positivity is a pretty cool thing fo sho!

      I would love to come and see some sequined wedding diapers!!! You go girl!

      -Adam

  11. Sharon RyanSeptember 7, 2013 at 1:19 pm #

    Adam,

    I ment to say in my post that im the person from Dubin in Ireland who has emailed you a few times……and my son loves Michaela’s meat loaf !
    Hope you remember me from this description.
    Totally love your cook book it has helped me so much.
    Had my surgery in April….but i will write another post about that.

    Don’t know what I would have done without your site for the past 3 years.
    Adam you’re the best.

    Stay Healthy

    Sharon

  12. Graham from England
    GrahamSeptember 7, 2013 at 3:57 pm #

    Its great to be part of the biggest and best UC site in the world!

    We can also help ourselves by continuing to speak about this unfasionable disease and therefore raising awareness. Too many of us suffer in silence and unfortunately, bad things happen when good people do nothing…

    Its hard to push the cause when we need energy for the daily fight but we will get there, good luck everyone, keep learning!

    Honorary Knighthood for Adam please?

    • AdamSeptember 8, 2013 at 4:31 am #

      hey there G,
      You’re more than a part you know…YOU ARE the Olive Oil King of the Planet no matter what the Italians think. Thanks for the kind words, and your message to others. Can’t agree with you more. have a great rest of Sunday,
      -Adam

  13. Lisa HSeptember 8, 2013 at 10:39 am #

    Thank you so much, Adam, for your wonderful website. Although my teenage daughter has UC, I find it so helpful to read about other sufferers and their journeys.
    Keep up your good work!!!
    Hugs…

  14. Marion PerezSeptember 9, 2013 at 10:04 am #

    Adam, will you provide us with the right answers to the survey? I’d like to see how accurate my answers were.
    Thanks!

    • AdamSeptember 9, 2013 at 6:15 pm #

      Marion,

      Your wish is my command, no seriously, quite a few people have commented just like you (and about 30 emails to my inbox) and instead of me answering, I’m actually going to be posting answers to all the questions from my own GI doctor who has agreed to participate with his own answers. As long as you are part of the newsletter you will get notified when the answers are posted to the site. Stay tuned (and thanks Doc! for hooking up the iHaveUC site once again)

      -Adam

  15. StephenSeptember 16, 2013 at 11:17 am #

    I am pleased and satisfied with the survey and the answers given. I agree totally that our bodies have different responses to what we eat and drink in spite of the fact that we all have the UC disease. Thanks again Adam and be well.

  16. KristenSeptember 16, 2013 at 6:37 pm #

    Thanks for your doc’s responses. I would add in terms of dietary triggers I found keeping a food and BM diary really useful to identify and control triggers. I found salad in large amounts to be a trigger for me, possibly because salads are high in fibre. I have found that eating smaller salads is ok or only eating salads every few days.

  17. bustamoveSeptember 16, 2013 at 8:15 pm #

    I’ve been struggling with a flare for the last 3 months. Being ever so viligant on my diet. My one weakness is wine- I must admit. I’ve given up chocolate, coffee, sugar, wheat, processed carbs – I mean really. Wine is the last semblance of normality that I’m holding on to. Anyway, I absolutely loved the photos of other UCer’s. It makes me feel not so alone with this disease. You are also so beautiful, so worldly, and I feel connected to you in a way I can’t really describe but, it is humbling. Love to you all. May we all have better tomorrows.

  18. SilSeptember 16, 2013 at 9:22 pm #

    I’ve had UC for about 2.5-3 years it got so bad I refused to eat , with a careful diet , asacol and vitamens my life seems to be back on track ! I can’t stress how much diet has to do with my UC , any sweets , fried food , pizza , bread , pop , wine are the num 1 killers for me ! Please get to know your body and even eating clean will take a while to feel better !! Pro biotics , digestive enzymes (veggie) glutamine , vitamen D ,and asacol 3 in the morning and 3 in the afternoon for about 6-8 months and cut down to 3 a day is keeping me in line ..
    Good Luck to everyone and yes it’s possible to feel better !!

    P.s keep a good diary This will really help you learn more about what foods are troublesome , but when having a flare all foods may be hard to digest ..

    Ciao Sil

  19. Sheila CrucetaSeptember 16, 2013 at 10:17 pm #

    If you take remicade do you have to take it for the rest of your life?

    • AdamSeptember 18, 2013 at 8:33 am #

      Hi Sheila,
      I don’t think their is any final/fore sure answer. There are some doctors who say stopping can reduce the chance that a re-initiation of remicade working in the future(if in-fact it did work initially). I believe this is based on the immune systems response and immunity to outside agents, similar to that of antibiotics when nit taken”properly”. But I’m sure that there must be some colitis folks who have stopped and re-introduced remicade successssfuly as well. Anybody else with some thoughts here?

  20. Veronica MartinSeptember 18, 2013 at 8:32 am #

    Very helpful and quite interesting. I was diagnosed Sept 1992 – have had two children, I have a FT career in a Pharmacetical Company and an active life. Get to know your body, be compliant with your meds, and don’t be afraid to ask your GI doc about new meds, changing your diet, etc. Thanks again Adam, stay well!

  21. Sheila CrucetaSeptember 18, 2013 at 10:01 am #

    Thank you Adam this really help I have been taking remicade for 2 years now and it has done wonders for me I have been good on my colon for like a year but my mom want me stop taking it. And I feel like if I stop I’m going get sick again and then I can’t take it again but I will still take it

    • AdamSeptember 18, 2013 at 6:05 pm #

      Hi Sheila,

      Just in case you haven’t read already, you might benefit from reading other people’s review from this website regarding their experiences with Remicade here:

      http://www.ihaveuc.com/remicade-reviews/

  22. Sheila CrucetaSeptember 18, 2013 at 8:34 pm #

    Thanks Adam that’s help me a lot

  23. RobSeptember 21, 2013 at 7:46 am #

    I question that I think should be asked is what eating disorders are developing due to this disease? Anorexia, bulimia? All awful but I am sure some are dealing with.

    • Richele
      RicheleSeptember 21, 2013 at 10:03 pm #

      Hi (again) Rob,
      I was just thinking about the relationship between eating disorders and UC, or any bowel disease really.
      My weight has fluctuated SO much over the past 7 yrs….I’ve gained and lost 10 20 30 lbs in a flash, and I think that has led me to having a very f’d up body image, weird food obsessions, calorie counting, starving myself, guilt. It’s horrible. Before Uc I never thought much about my weight…
      I wonder if other UCrs have had/are having similar experiences…
      Thanks for bringing up the topic :)
      R

  24. RobSeptember 22, 2013 at 12:13 pm #

    Hey Richele thanks for your honesty. I believe it is quite common for some UVers to develop some type of eating disorders especially during a flare. From calorie counting, carb counting, amount of food intake, BMs and amount of solids passed how can one nit develop a disorder. Food becomes a love hate relationship and is constant on the mind.

  25. Jon SheenOctober 5, 2013 at 9:31 am #

    I don’t think this was a good survey. I’m no better informed after reading the results than before.

    Also salad and Chinese food has different ingredients for many dishes. These questions weren’t precise in the approach enough. A question like “do tomatoes cause a UC flare?” would have been better.

    • AdamOctober 6, 2013 at 4:24 am #

      Hi Jon,

      Thx for your input. It’s always great to hear contructive feedback from people like you.

  26. Courtney HendersonOctober 31, 2013 at 8:57 am #

    I’m soo glad the link to this survey was sent to me. Thank you for doing this. I would like to get your newsletter.

    I was diagnosed with UC in 2005. I want to say for the women wondering about getting pregnant with UC, go for it! I def recommend discussing with your doctors (both OB/GYN and Gastro) first so that everyone is on the same page; ie will have a game plan for if you should Hve a flare up during pregnancy. I have two beautiful little girls, Rubi Grace who just turned 2 and Izabella Noelle who is going to turn 1 in less than two weeks. Rubi was born 2 1/2 weeks eary ad Izzy was born 4 weeks early. However they were both great weights and perfect in every way! I have to admit I was a littl scared to get pregnant having UC but after talking with my Gastro about it, he put my mind at ease.
    Everyone is different as well as symptoms and severity so I would definently talk with your doctors first but do not let UC stop you from having a family!!

    Thank you again for this survey. I look forward to your newsletter. :-)

    • AdamOctober 31, 2013 at 4:34 pm #

      Hey Courtney,

      Thanks for your comments, and for joining the site. To get on the newsletter you can sign up at http://www.ihaveuc.com/newsletter if you haven’t already:)

      Best to you,
      -Adam

  27. UC Family Boy
    uc family boyJune 28, 2014 at 9:05 am #

    http://www.thirdage.com/digestive-health/good-vs-bad-bacteria

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