791 Person Colitis Question and Answer Survey

Below are the answers to all the questions from the recent survey that took place in October.

The participants this month are from 46 different countries. (I’ve listed all the countries in the video below.  All participants received an email to participate via the iHaveUC newsletter.)

Like the previous survey, the questions were the exact questions that have been asked by other UC’ers who use the iHaveUC website.

THANK YOU ONCE AGAIN to everyone who participated, and to EVERYONE who uploaded your pictures. Here are the pictures of some of this month’s survey participants:

A bit different from the previous survey last month, this time I have placed my own answers and comments below each question.  I’ve also included a few links to outside resources, and some of the comments that participants in the survey made.

At the very very bottom of the survey, you’ll find a listing of additional comments that participants left.

So, without anymore delay, below are the questions, and results from the 791 participants, and the answers I’ve added, which are my own opinions/answers.

Question 1:

Can you get a Flu Shot if you have UC?

• 75% – Yes
• 21% – Not Sure
•  4% –  No

I myself have never had a flu shot.  So, I’m not really able to answer this question with firsthand experience.  But, I can say for sure, that many many people who follow this website who have ulcerative colitis do get the flu shot, some religiously.  There are a few related stories about this question which you may be interested in reading up on if you like: “Getting the Flu Shot While on Remicade – https://www.ihaveuc.com/getting-flu-shots-while-on-remicade/”

Below is a comment that a participants left with regards to this question:

“If you want to get the flu shot, it is recommended that anyone with a compromised immune system receive the shot (dead flu virus) instead of the flu mist (which contains tiny amounts of live flu virus)”

Question 2:

Can probiotics make ulcerative colitis worse?

• 53% – No
• 37% – Not Sure
• 10% – Yes

As many of you know, I don’t treat my UC with “over the counter” probiotics (or any other medications for that matter) but many UC’ers do use probiotics successfully to treat their UC.  It is rare, but every once in a while, I receive a message from a UC’er where they have felt that probiotics hurt their recovery from a particular flare up or active symptoms.  I’m sure its rather hard to determine exactly if the probitoics are the reason for symptoms getting worse (as is the case with any other variable).  Below is a comment someone left with regards to probiotics:

“All probiotics are not the same. Some strains of probiotic are not beneficial, others are. The key is to take the beneficial ones and eliminate the ones that can make the condition worse.”

I’d encourage you to read the Probiotics Survey Results from February 2012 if you have not already:  https://www.ihaveuc.com/129-person-ulcerative-colitis-and-probiotics-survey-results/

And of course you can read Bev’s stories about probiotics and her success with them here: https://www.ihaveuc.com/author/bev/

Question 3:

Can you stay in remission for 1 year if you have UC?

• 89% – Yes
•   9% – Not Sure
•   2% – No

Of course you can.  There’s tons of UC’ers who have reached remission after being diagnosed who have gone on to live symptom free lives for years and years.  AND, there are many different ways for getting to and staying in remission.  Drugs, diet, and various “alternative treatments” have worked for many.  I myself have enjoyed that experience, and I’ve met many other UC’ers in person who have the same story.  There are even people who have gone for over 10 and 15 years without a single major flare up.  So, yes indeed, 1 year of remission with UC is entirely possible.

Question 4:

Can a 7 year old child have ulcerative colitis?

• 82% – Yes
• 17% – Not Sure
•   1% – No

Yes, a 7 year old can have ulcerative colitis.  Here is a story from 2012 from a mother (Susan) who wrote about her 7 year old’s UC:  https://www.ihaveuc.com/mom-needing-help-here-with-my-7-year-olds-colitis/

Question 5:

Can a headache come from colitis?

• 50% – Yes
• 38% – Not Sure
• 12% – No

Here’s a comment one of the survey participants:

“I think headaches are a result of the medication used to treat the UC and not the UC itself.”

I experienced a severe headache a few months after my diagnosis when my GI at the time placed me on a high dose of sulfasalazine.  It was awful, and since I rarely ever get headaches, I can still remember the feelings.  It turns out when we lowered the dose, it went away.

In doing some quick research on PubMed (which is surprisingly still up and running even with the government shut-down..) I did come across an article which I have not read yet.  Titled: Cerebral Venous Thrombosis in Ulcerative Colitis – http://www.ncbi.nlm.nih.gov/pubmed/23546367.  There is mention there how a VERY SMALL percentage of IBD patients may enounter this, and a common symptom is headache.

My wife gets headaches very often, and I still for the life of me can’t seem to figure out where they come from.  If you get headaches too, maybe you’re the same.  And it sure is frustrating.

A Primary care doctor I used to work with in San Francisco felt that nearly all headaches was a result of a decreased supply of oxygen to the brain.  He felt that changes in breathing and a short term limited supply of oxygen was the reason for the headaches.(Take it as you like)

Question 6:

Can a person fart after having your colon removed?

• 69% – Not Sure
• 25% – Yes
•   6% –  No

I selected this question because I fall into the 69% group as well.  My wife thought it was a pretty interesting question to include in this month’s survey.  Thankfully, we received a comment from a UC’er with experience in this area and here’s a pretty clear answer:

“About the farting after you’ve had your colon removed: It depends on the surgery. If you have a j-pouch then yes, but if you have an ostomy then not from your butt. Your stoma will release gas, essentially farting and sometimes make noise. With the ostomy the only thing coming from your butt will be mucus and sometimes blood after the surgery.”

Question 7:

Can colitis affect your sexual life?

• 86% – Yes
•  7% – No
•  7% – Not Sure

Sex, one of the topics we just don’t talk about very much on this website.  For any of you who’d like to get into more details on this topic, you can blame me for keeping it so under wraps.  We talk about our poop holes, and funky smells, and all sorts of stuff, can’t we just leave sex out of the equation…No.  We can’t.  It’s part of who we are, and like it or not, it’s on our minds.  Some people’s minds more than others.

Here’s my take from my own experience.  During times of severe flare ups, sex slows down and even stops for days/weeks.  When I was sick and in bed filled with nothing but gas and fatigue…come on…it wasn’t even on the mind.  But, when things are on the rebound colitis wise, and especially when in remission, it all comes back.

I’d encourage you to read the relationships survey, there’s a question there that has many responses from others:  https://www.ihaveuc.com/50-person-relationships-and-uc-survery/

Question 8:

Can colitis make your body ache?

• 93% – Yes
•   5% – Not Sure
•   2% – No

Yes indeed, colitis has an evil way of making all sorts of parts of our bodies ache.  Eyes, and ears and mouth and nose…I’m sure those parts of the body for some people, but cramps in the abdomen, and back and joint/tendon aches are often the most common for people with UC.  And these aches and pains can unfortunately be harder to deal with than seeing some blood in the toilet bowl.

It’s difficult as well for anybody who’s going through these pains for the first time.  For me, it was a shuffle from my GI doctor, and then over to see the Rhuematologist doctors, and back and fourth.  There was a ton of confusion regarding any relationship between my UC symptoms and the “other aches and pains”, but in the end I’ve learned they are most definitely related.  Feel free to read up on the “Colitis Joint Pains Survey” to find out what others think – https://www.ihaveuc.com/99-person-colitis-joint-pains-survey/.

Question 9:

Can you become a kindergarten teacher with ulcerative colitis?

• 93% – Yes
•    7% – Not Sure
•    1% – No

Here’s your answers directly from 3 different UC’ers who left comments:

“I am a kindergarten teacher with UC!”

“I am a teacher and I am making it work. I teach 7th grade. At first I was really hesitant about teaching. I have to leave the classroom to use the restroom. But I’ve become more comfortable with it. However, 7th graders can watch themselves better then kindergarteners. I am in a active flair too. I imagine its better when things are calm. I also keep a change of clothes at school.”

“I am a kindergarten teacher of 6 years. My symptoms range from day to day and the stress of the job does seem to create flares. Although , I have had cdiff 5 times this year… : (”

Question 10:

Can you take Asacol with Remicade?

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

Back over 4 years ago when I was being prescribed medications to treat my UC, I was taking Sulfasalazine when I started my first of 3 Remicade infusions.  It is not uncommon by any means for people to be taking one or more medications while also starting/taking Remicade infusions.

Like with ALL medications, you should consult with your physician/doctor.  They are the ones who should be trained in determining the chances that a negative side effect may occur while taking multiple medications at the same time.

I personally feel that due to the nature of our disease (especially when symptoms are present), it is very hard if not impossible sometimes to figure out what is working when there are multiple variables in the mix.  For example, if you are taking Remicade, lialda, and a mild dose of prednisone steroids…how the heck can you really know what is working if your symptoms start to improve?  It’s very hard.  But taking only 1 variable into account when symptoms are very active is not always an option that suits everyone, but it’s something I for sure think about when reading the stories on this site.

A few participants added their own comments to this question, here they are:

“clarifying Q11: I am currently on asacol and Remicade.”

“Remacaid has truly helped and I take asacol also”

Question 11:

Can you use an enema when you have ulcerative colitis?

• 77% – Yes
• 21% – Not Sure
•   2% – No

Enemas are a topic I definitely don’t know much about.  I was prescribed a 5-ASA based enema within a month after my diagnosis and I failed miserably at holding in the medication for any recommended length of time.  As you can read in this site, there are a number of people who use/used enemas to help control their UC, the same goes with suppositories.  So, my answer is Yes, you can use an enema when you have UC.  BUT, you should for sure talk with your doctor or treating physician before you take that step.  There is a huge online industry filled with thousands and thousands of different “quick fix” enema programs anybody can find online, and I myself sure would not get involved in any of those.  There’s a story from a UC’er written in 2011 titled: “Colonics for Colitis Therapy” which you can read here: https://www.ihaveuc.com/colonics-for-colitis-alternative-therapies/

Here is a comment which a participant added which I think everyone should think about:

“I think it would be helpful to have a “sometimes” or a “maybe” option to a lot of these questions, like Q12 – some enemas (prescription) can definitely be used, but other enemas (OTC) might aggravate and make things worse?”

One of the older posts on the site concerning enemas was submitted by a super cool girl named Marine who’s from Cyprus.  She has lots of experience with Vitamin E enemas, and she shared a story about how she creates them.  You can read about her experience here:  https://www.ihaveuc.com/how-to-make-a-vitamin-e-enema/

Question 12:

Can prednisone/prednisolon cause tooth decay ?

• 61% – Not Sure
• 33% – Yes
•   6% – No

I most definitely think that prednisone can play a part in tooth decay.  I’m no dentist, but I do have a set of teeth, and during the times when I was on prednisone 4 plus years ago, I had more sensitivity and cavity issues than usual.  And I’m pretty sure this is not just me.  There has been a constant flow of questions regarding this topic from time to time.  Here is a story that was posted several years ago on the exact topic, and you’ll see a pretty interesting comment right below the story from someone in the field of dentistry.  https://www.ihaveuc.com/dental-issues-with-ibd-and-prednisone/

I know there are some dentists with UC who follow the site, any professional opinions on prednisone and tooth decay?

I was not able to find any research specifically on this topic, however there was an interesting study that is somewhat related (orally):  Oral Manifestations of Gastrointestinal Disease, which you can read whenever you like: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657699/

Here are two comments from participants related to this question:

“Whilst prednisone/ prednisolone does deplete calcium levels which affects bone density and weaken teeth, essentially tooth decay will be caused by sugars and acidic foods as well as poor oral hygiene/care. Steroids may cause gums to become inflamed and even bleed, but this is temporary.”

“Question 13 Tooth Decay? Have not read any evidence on this, however as I have read prednisolone depletes calcium levels in the body I guess this is possible.”

Lastly, here is a story that was submitted November 10, 2010 related to this topic: 

Question 13:

Can ulcerative colitis stop monthly periods?

• 61% – Not Sure
• 20% – Yes
• 19% – No

Here is a comment from a participant regarding question 13:

“When I was in my 3 year long flare from hell I was only having a period about once every three months and it was really light. When I started getting better my periods came back really heavy and I had period pain for the first time in my life. But they have settled down and are nice and regular now.”

Also, there is limited information available online on this topic.  But, I did find a study titled: “Pattern of gastrointestinal and psychosomatic symptoms across the menstrual cycle in women with inflammatory bowel disease.”  Also, here is an email address to one of the scientists involved with the study if you’d like to contact them for further information: eparlak@ato.org.tr

Question 14:

Can you eat pancakes with colitis?

• 87% – Yes
•   7% – Not Sure
•   6% – No

I’m hoping that you realize this question is FOR SURE going to bring out different answers from different people living with UC.  I myself no longer eat pancakes, and I have not for years.(I used to chow on them at every opportunity, especially the Bisquick ones my mom used to make in the morning with tons of the Log Cabin Syrup that was basically corn syrup).  However, I know there are many upon many UC’ers who definitely do eat pancakes.  People who eat good old fashioned IHOP pancakes(for those of you who know about IHOP), and all the other varieties including whole grain, buckwheat and even almond flour pancakes.  For those of you who follow the SCD diet, the almond flour pancakes are probably among the most common/popular for those who still enjoy pancakes.

If you’re wondering why someone would even worry about pancakes and what the correlation may be with regards to UC…well, it depends on your thinking.  Some people believe that most (if not all) grains are not easily digested and negatively effect the colon and cause inflammation over and over again (active colitis symptoms).  So, those type of folks (myself included) would probably tend to steer clear of pancakes (minus some nut flour variations).

Here’s a comment from a participant:

“You can eat pancakes, but not make with regular flour or bisquick. You would need to use coconut flour or almond flour. There are many great recipes out there using both coconut and almond flours.”

And here’s another one:

“‘eating pancakes’  is not a yes or no question. It is yes ONLY if gluten free mixes are used (those with potato starch and brown rice flour). Going gluten free helps your digestive system regardless of whether you have an intolerance or not.”

Question 15:

Can you lose your job because of UC?

• 48% – Yes
• 36% – No
• 16% – Not Sure

Unfortunately, I’ve heard too many times from people who are in the middle of active UC flares that they have infact lost their job due to their UC.  It is very unfortunate to hear, and its amazing to think this is possible.

With that said, I have heard from an even larger amount of people who have been treated very well from their places of employment when complications from UC affected their work.  And this is GREAT NEWS.

Below are some comments from others on this topic:

“Legally they can’t fire you at your job because you have colitis….but if you myster mysteriously show up late all the time (BC you have to find a bathroom during rush hour), get nothing done at work (because of fatigue), and take 20 bathroom breaks a day without telling them you have colitis
… Odds are not in tour favor.  I once told a mgr abt my colitis. Turned out her husband has colitis, so she understood. Miracle.”

“I lost a job because I was too sick. Also I have terrible bodyaches which require me to take hydrocone.”

Question 16:

Is it possible to have a flare up while on Remicade or Humira?

• 64% – Yes
• 36% – Not Sure
• 0% – No

Yes.  It is possible.  I had a flare up while on both of those medications 4 plus years ago.  There is quite a bit of detail on these particular biologic medications not working for everyone and sometimes ceasing to work once started.  If you are interested in researching this topic further, I’d encourage you to use PudMed which is a free resource of clinical studies.  There’s lots of info there, and I use it weekly to learn more.

Question 17:

Is it hard to change your Gastro doctor if you are not happy with them?

• 58% – No
• 23% – Yes
• 19% – Not Sure

This of course depends on a number of factors.  For example:

1. did you like your doctor at any point in time before deciding to make a change?
2. did you and your doctor have a high amount of trust between the two of you?
3. Did your parents/friends/relative recommend the doctor to you in the first place?
4. How much time do you have to search out a new doctor?
5. Have you read the list of HUNDREDS OF GI DOCTORS here on the site yet??? (https://www.ihaveuc.com/find-a-doctor-near-you/)

Finding a new doctor is not a simple task.  But it is very important, and one which deserves your full attention.  Come on, this might be the guy(or gal) who’s poking around inside your butt hole afterall.

Sometimes you have no choice, and you can only get what is available, but that’s often not the case.

Just over a year ago I was living in a new spot, and looking for a new doctor to perform my colonoscopy which I was hoping to get before setting off on some travels.   It had been 4 years since my first colonoscopy, so it was time.  Here a story I wrote for the site about my first encounter with the new doctor I was about to get butt probed by:  https://www.ihaveuc.com/what-my-gastro-doctor-told-me/

I asked him a whole bunch of questions, and I’ll be darned, if things started to get super weird, or he gave me the hebbie geebies, I would not have hesitated to go and find a different doctor to work with.  We need to discriminate as patients, and not settle for just some average GI doctor to help us with our disease.  Call the different doctor’s offices around wherever you live, and ask questions.  Again, you can always read the doctors listed on the link above, I add more to the list each week as people like you send me doctor reviews.

Eventually, you’ll find the one that works best for you.(And that doctor might not be the exact doctor your friends/parents/wife/kids think is the best for you, and that’s OK!!)

Here are some related comments from survey participants:

“Trying to change Gastro doctors is very difficult living on a smaller city.”

“Currently experiencing issues with current GP and mismanagement of my symptoms. Have a Gastro doctor(referred by the same GP) but never seen different GP or Gastro doctor since diagnosis in Feb 2011. Now thinking it would be worth seeing a new GP/Gastro doctor so that I have a second opinion. The hard part isn’t changing doctors, but knowing who’s good and who isn’t, and who has extensive experience with UC patients.”

Question 18:

Is it normal to hide your colitis from your friends?

• 73% – Yes
• 21% – No
• 6% – Not Sure

Yes of course.  Hiding our symptoms is the easy thing to do, an we ALL have done it at some point in time.  But, I’ve felt that hiding our disease is actually not the most beneficial thing to be doing.  It often creates more stress in our lives than we think we are saving ourselves from, AND, friends tend to want to know what’s going on.  That’s right, FRIENDS want to know what’s happening.  And that’s a good thing.

I loved reading this comment below, and hopefully it will inspire some folks to make progress in this area if progress is needed:

” It is normal to hide your colitis from friends but in the past year I have found that talking about it with friends and colleagues has helped me learn a lot about the disease and that I am not alone.”

Below are the pictures that were submitted by some of the participants of the survey:

(the final section of the survey allowed participants to upload a picture if they wanted to::)  You can click on any image below to see the picture in full size, and you can then print out and paste up on your bedroom wall the pictures you like:)

Additional Comments that were left on the survey:

• Pancakes made with almond flour are fantastic!
• Hi adam,i glad there’s someone like you putting effort for people with this condition like us.  My question is, what “remission” exactly means, is it the count of poop or bathroom trips? Totally feeling normal( no bloating, flatulent and cramps, once a day bathroom trip? Is it the normal quality of the poo? Or is it minimal amount of meds required( i understand even we are on remission or even least symptomatic, we still continue our meds). My own definition of remission i, correct me if im wrong is when i need the least meds(3000 mg of mesalamine) mild tummy disturbance and can tolerate optimal activity. my g.e. refers remission as all normal g.i. Mucosa colonoscopically but still has the cramps, bloating and intolerance to milk products
• If you want to get the flu shot, it is recommended that anyone with a compromised immune system receive the shot (dead flu virus) instead of the flu mist (which contains tiny amounts of live flu virus)
• Get on the Specific Carb Diet. All your troubles will be over. From one who knows.
• A lot of these questions can be questioned by every single person with UC. The effects of UC are all across the spectrum.  I believe that everyone with UC can agree with the fact that being in the hospital sucks.  I can’t wait to see the results! Awesome questions, Adam.
• I don’t think it affect sex, but the embarrassment will. I don’t want to start a relationship because of it. I’m not afraid to tell anyone but I found a lot more ppl have it but I would have never know if I hadn’t let on I had it.
• Not sure about q 19 but I find it helps letting people know just incase u get caught short and need to make a dash
• Comment I would like more information on diet,would like to be med’s free.
• Question 13 Tooth Decay? As prednesolon effects Calcium in the body would the Answer be Yes.
• Question 13 Tooth Decay? Have not read any evidence on this, however as I have read prednisolone depletes calcium levels in the body I guess this is possible.
• I suffered from u/c for over 8 years, but have been in remission for almost a year. Over those 8 years I had been hospitalized several times due to server anemia that required blood transfusions. my remission is a bit of a fluke. (Tylenol with codeine) One dose stopped my gut spasms and with in 48 hours my ulcers stopped bleeding. I immediately (with in a month) gained over twenty pounds. I can now eat raw fruits and vegetables and typically stay away from fried foods. I feel blessed after suffering for so many years.
• Those were weird, random, ridiculous questions……
• Keep up the good work bro!
• Unfortunately a lot of the questions I had no idea, I can only answer from my own experience.
• Have put down not sure when I didn’t know the ans.
• I did the gaps diet for a few months and at the start of a flare and I helps SO MUCH. Makes bleeding stop! (Impossible ikikik) also LDN has stopped bleeding with no flares or pain or diet for over 6 months- I think GI doctors should look into this miracle drug! And no side
• I am a kindergarten teacher of 6 years. My symptoms range from day to day and the stress of the job does seem to create flares. Although , I have had cdiff 5 times this year… : (
• I was just diagnosed with uc a few weeks ago. This site has given me so much information on questions I have had. Thank you so much.
• I can’t believe some of these are real questions!
• colitis causes so many issues. Anything from arthritis, to embarrassment lol.
• Sometimes my body feels bruised all over, can that be from the colitis?
• I am a teacher and I am making it work. I teach 7th grade. At first I was really hesitant about teaching. I have to leave the classroom to use the restroom. But I’ve become more comfortable with it. However, 7th graders can watch themselves better then kindergarteners. I am in a active flair too. I imagine its better when things are calm. I also keep a change of clothes at school.  I kept my UC from my friends for awhile because I was embarrassed by it. I have now told a lot more people and it is great to have the support. It took me awhile not to be embarrassed by it though.
• You can’t be an airline pilot with UC. Don’t know if any other jobs have this restriction.
• Have many of you UCers heard of of experimented with an elemental diet?
• I’ve had everything removed during the past year and a half…was in and out of hospital since 2010-Since I have had everything removed I have been doing pretty good-Had the last surgery in March- my main problem is with tiredness and not being able to do what I did before and sleeping is next to impossible almost.. Through my experience I have learned you can’t believe everything the Doctor tells you as far as how life will be. Unless they have been through it they just don’t know. It was a rough go but is better now I just hope it continues.
• This survey was very interesting as I have been a Colitis sufferer for 2 years and had 3 flares within that time frame with the final flare landing me in hospital. I thought I had done plenty of research on the disease but clearly not, as there where plenty of questions that I was unsure about. Thankyou Adam for raising these questions, I definitely have some research to do.
• It is normal to hide your colitis from friends but in the past year I have found that talking about it with friends and colleagues has helped me learn a lot about the disease and that I am not alone.
• Q19: You shouldn’t have to feel like you have to hide your condition (UC) to your friend. As friend are meant to be understanding and supportive. Now this being said, there is different level of friendship that is true, in here I am taking in account that the word friend in the sense of close friend, sharing your every day life knowing your struggles as well as success. :)
• I would just like to say of you are feeling uncomfortable with talking about your disease pleeease go to camp oasis!!! It changed my life and I know it will change yours in the best way possible :D
• for sure . Be kind to your colon during flare up. Avoid food that may trigger flares . Medication and proper nutritious diet is essential .  during my first stage of heavy dose of Predisone , it effected my mansteration cycle. My hormone level drops and it does effect my sex life. And now, I am a sexless person. In my case, Predisone is a destroyer . To my entire well being.
• Hello Adam, up to now just read but not participated. Thanks for your advice. I have no idea on the answers to some questions so sorry. Yvonne Liverpool England.
• Currently experiencing issues with current GP and mismanagement of my symptoms. Have a Gastro doctor(referred by the same GP) but never seen different GP or Gastro doctor since diagnosis in Feb 2011. Now thinking it would be worth seeing a new GP/Gastro doctor so that I have a second opinion. The hard part isn’t changing doctors, but knowing who’s good and who isn’t, and who has extensive experience with UC patients.
• When I was in my 3 year long flare from hell I was only having a period about once every three months and it was really light. When I started getting better my periods came back really heavy and I had period pain for the first time in my life. But they have settled down and are nice and regular now.
• Some of these were tough ; ) Thank you!
• colitis is both a very physical disease but also depends on your mind. don’t see it as a limitation & hold you back from enjoying your life. people will be very subjective with these answers but ultimately it’s is up to yourself to make changes & see what works to improve your condition & lifestyle.
• CAn diet alone put you into remission. —I would ask that question because I have read people like yourself who have been in remission due just to food but I am not so lucky. But being gluten free has made a difference but I am still on pred and Imuran!  But thanks for your website and your book, they both are awesome. This website has made me sane after thinking I was going crazy when I was first diagnosed a year ago.Adrian Chicago il
• I wasn’t sure if these were supposed to be opinion based of based off of pure facts. Sorry.
• I’m surprised at how many of these questions I don’t know the answer to! Thanks for the surveys, Adam :-)
• Some of these questions are really odd! I’m assuming some one, some where has asked some of them or they wouldn’t be on the survey.I’ve been in remission from outward symptom since February 2013 until yesterday! I began experiencing stomach pain, which is NEW for me. I’m not sure. I think, but I can’t be sure (it’s really difficult to see some times) there may have been blood in the stool. I have crappy close up vision, and I ALWAYS examine my poop to be sure there is no blood in it. It looked to me like there may have been a layer of blood on top of one of the stools, but I couldn’t tell. The color of the blood & the poop are so close some times! Hate to be graphic, but because I had pain, I am probably right. I hope not. Up until now, naltrexone has been doing the job. I’m crossing my fingers.
• you should have a survey for people that have been taking remicade. i have been taking remicade for two years and have been suffering from severe joint pain. both my gi and my rheumy drnied it was caused by remicade. but it has been fettinf worse with each infusion and i started realizing the hoint pain was caused by remicade. but when i tried talking to my doctors they denied it and didnt want me to stop. thankfully i have been able to talk to ither people with similar experiences and so i feel more confident standing up for myself and refusing mire infusions. people need to be informed. it heloed my uc but has hurt me joint wise
• Will you always have some mucus leaks with colitis?
• I am 17 and was diagnosed 3 1/2 years ago. Having colitis has changed my life, but I refuse to let it define my life. I am greater than my colitis. Once I got used to the dietary changes, the probiotics and the supplements, I have been able to manage my colitis.
• Why is it that I see more blood in the loose BM from about 5 thru 9 AM than othr times of the day. I have been on Asacol, Apriso, now Lialda and Prednisone, along wih Curcumim, juicing, Alow Juice, L-Glutamine and am not sure what else. Nothing seems to ease the ongoing Flare-Ups. I truly believe that the Drs. know very little about how one should deal with this plague from hell. (Jack) Benner
• I love these survey’s!!
• The picture is of me while taking the test eating on my lunch break.
• Can UC cause your hair to fall out? (not on medication for UC)
• If possible it would be useful to have the answers to the questions Thankyou
• Question 6 asks if a headache can come from colitis. I think headaches are a result of the medication used to treat the UC and not the UC itself.
• ‘eating pancakes’ (Q15) is not a yes or no question. It is yes ONLY if gluten free mixes are used (those with potato starch and brown rice flour). Going gluten free helps your digestive system regardless of whether you have an intolerance or not.
• II lost a job because I was too sick. Also I have terrible bodyaches which require me to take hydrocone.
• Took some shots in the dark here, but good survey!
• June 2013 I stopped all of my meds (Humeria, methotrexate, protofoam) b/c I was in the ER every few weeks with the side effects from all of those drugs. I decided that should I deal with the colitis and handle it as it comes with home remedies. I have doing okay with that, however; I have had to call into work now 3 times in the last 3 months (high chance of losing my job!) and don’t have a doc to back me up on reason I called in sick. I still feel better without all the meds and everyone is telling me I look healthier, so I’m sticking with it. Just wanted to share that…
• Would like to know more about muscle and joint pain. When had flare up, no pain there but since taking 6MP (which helped very much) have had severe body aches and stab like effect in shoulders, knees, feet especially at nighttime. Thanks….I am told by gastro it is a symptom of the disease……..and to what extent is this true. Appreciate any and all info on this matter. Most gratefully, N. Anderson
• I have realized that I don’t know much about my illness
• Trying to change Gastro doctors is very difficult living on a smaller city.
• I am currently on Remicade but keep having flares mid cycle. I don’t know why snd my doctor has n I t been helpful. Any adeas?
• Some of them are silly and I probably won’t participate again.
• People need to make sure they clear out at least six weeks after their first infusion of Remicade in case they have a bad reaction to it and become bed ridden. It is NOT a great drug for everyone, it is extremely dangerous.
• What works for some wont work for all. it’s trial and error. I am OK with some food and drink and not so good with others. it’s all about finding what the right balance is for you. no one wants this awful condition but everyone is looking for the golden answer of finding a cure. Stay strong everyone and never give up . United we stand. together we will overcome.
• Just like every person is different…every person with UC is different. What works/bothers you isn’t the same as the next UC patient.
• where are the results posted?
• Never lose hope. Never lose faith. NEVER GIVE UP! Be your own advocate and always be open to anything and everything. Take time to research and look at all options wether its alernative medicine or conventional medicine. Stay active and always get second third fourth opionions before you make any huge decisions!
• What percentage of patients diagnosed with Colitis actually have to have their Colon removed?
• The fart question depends on if you keep your anus or not for reconnection/ileostomy. My periods stopped due to the anaemia
• Funny, farting and not having a colon is not anything I ever thought about as I still have my colon but even though I just got out of a flare, if I didn’t owe so much money on my credit cards, having my colon removed would now be something I’d consider.
• Adams the best! Love your website, many smiles, Colleen
• Q3. All probiotics are not the same. Some strains of probiotic are not beneficial, others are. The key is to take the beneficial ones and eliminate the ones that can make the condition worse.
• UC is different for everyone. I was first diagnosed with left side colitis, which was treated topically and, as such, I lived a fairly normal life. Seven years later, the disease progressed and I now live with pancolitis, which makes is a lot harder to travel and partake in normal day to day activities. I have gotten two surgical opinions, and both surgeons basically told me I am not “sick enough” and would have to exhaust every available treatment before they would remove my colon. I now have to live my life day to day and find out what I am dealing with when I wake up each morning. So,yes, some days I might eat a pancake and other days, I wouldn’t even think about it!
• Whilst prednisone/ prednisolone does deplete calcium levels which affects bone density and weaken teeth, essentially tooth decay will be caused by sugars and acidic foods as well as poor oral hygiene/care. Steroids may cause gums to become inflamed and even bleed, but this is temporary.
• UC is a very personal disease, and is not one size fits all. What works for one person may not work equally as well for another. One must consider this when searching for answers. After dealing with UC for over 15 years myself, trial and error, along with educated guesses and common sense, has served me well.
• Can’t answer a fee if these because of gender and/or circumstance~
• I would like to know more about the affects uc has and anxiety or depression in people and how long they have been diagnosed
• Keep the tips coming on anything helping to manage this awful disease.
• I was just diagnosed two days ago, so I am still learning. Thank you so much for all the great information!!
• I think it would be helpful to have a “sometimes” or a “maybe” option to a lot of these questions, like Q12 – some enemas (prescription) can definitely be used, but other enemas (OTC) might aggravate and make things worse?
• I have a Question. Does anyone notice dry, split and painful skin under and around fingernail(s) just before and during a Flare-up?
• I am currently enrolled in a clinical study for fecal transplant in Canada. I will share my results at the conclusion.
• I currently am trying to keep my UC under control with diet and supplements, no prescriptions, so I am unfamiliar with any of the drugs mentioned in the survey.
• I was diagnosed with UC in 2010. I would think an employer could not fire you because of a medical condition but in this day and age who knows!!
• I’ve been with my gastro for almost 20 years. I am wanting to change because he seems to be too busy and hard to get an appointment in a timely manner with. It is hard to change because I feel some loyalty and have a history. I am afraid if I change and don’t like the new doc any better it will be difficult to go back to my original. You never know what docs or anyone is like until you have spent time with them.
• Remacaid has truly helped and I take asacol also
• VSL #3 has been great for me but was AWFUL for a friend. Just like everything with this dang disease- it’s different person to person
• clarifying Q11: I am currently on asacol and Remicade. Q18: I found changing doctors was emotionally hard. It’s certainly possible, but depending on your personality and the stage of your condition, it can be traumatic.
• I have only been dignosed since Feb. But have been on all the meds. 3 months on Humira, and I am having another flare. High dose prednisone 60mg is only thing helping. I only had a 2 month remmission. I am still learning…love this site. I am really scared. I am 23 and in Law school, hoping to get in a trial in Chicago.
• Thanks for all you do, I do not feel alone anymore.
• Legally they can’t fire you at your job because you have colitis….but if you myster mysteriously show up late all the time (BC you have to find a bathroom during rush hour), get nothing done at work (because of fatigue), and take 20 bathroom breaks a day without telling them you have colitis … Odds are not in tour favor. I once told a mgr abt my colitis. Turned out her husband has colitis, so she understood. Miracle.
• be good to see the answers x
• About the farting after you’ve had your colon removed: It depends on the surgery. If you have a j-pouch then yes, but if you have an ostomy then not from your butt. Your stoma will release gas, essentially farting and sometimes make noise. With the ostomy the only thing coming from your butt will be mucus and sometimes blood after the surgery.
• Thanks for this! I look forward to the answers. Some of this I should have known years ago but information was “you will learn how it affects you”.
• I do not understand if this was a survey or a test.
• Most of the answers to these questions depend upon the person.
• hi anti depresants , definitely help to bring uc under control, I am taking no medicine and eating and drinking anything , I have now stopped, all medicines after three months on anti depressants, it brings stress levels down , how long it will last I don’t no yet
• Day 6 on Prednisilone is making me weepy
• Just an FYI……I took this for my daughter who is now 12 & has had UC for over 2 yrs.
• Smoking cigarettes has been the only cure for me to prevent a flair up. I would like to quit but too affraid of getting sick again.
• UC sux!!
• How common is it to eventually have your colon and rectum removed?
• I’ve had Colitis for 5 months and i’m having a hard time adjusting to it. I suffer from chronic pain in my joints, fear of eating, 20 plus bathroom trips,and sometimes i wake up and can’t even walk or im stiff and ache all over. I’ve had to call in atleast ten times since being released from the hospital back in May. I wish this on knowone.My job is in question because of lack of knowledge or compassion from management. Just wanted to share to vent continuous frustration.
• I couldn’t really answer the question about periods and UC since I’m a man haha but other than that this was a good survey, and I look forward to seeing the results!
• I wish the fda would approve fecal transplant and insurance would pay for it !
• Is it normal to hide your colitis from your friends? I know a lot of people do but I can’t understand why. You’d tell your friends you have the flu, stomach flu, colon cancer, asthma, etc. why not UC? No need to go into the horrible details but enough info to explain why you can’t go somewhere or always need a bathroom nearby. Do you think your strange behavior and hours in the bathroom is going unnoticed? Help others understand what UC is all about. Knowledge IS power. About the fart question, is this after small intestine has been reconnected? Unclear on state of what is connected to what!
• I have had UC for 16 years and apparently I STILL don’t know much about it. I was iffy about the pancake question, because I steer clear of those things now that I am on the SCD, AND it has worked so well!
• The more you read about UC the more you realise that Doctors and medication does not seem to help!!
• Some of The Qs can have other meanings than intended. For example: ” Can you become a teacher?” Technically You can become it depends on so many things, but most probably you won’t be able to practice it if you have UC mild or worse. Even in this conditions you can try and practice it :).
• You can eat pancakes, but not make with regular flour or bisquick. You would need to use coconut flour or almond flour. There are many great recipes out there using both coconut and almond flours.
• I am a kindergarten teacher with UC!
• I don’t think there is a right or wrong to some of these questions. Perhaps some peo do not feel comfortable telling a friend about they have colitis while others are more open. Technically, it is illegal for one to be fired over the fact that someone has colitis for any other medical condition. but that does not mean it has not happened.
• A lot of things I don’t know about the drugs and combinations/side effects etc – I’ve only ever accepted short doses of Predisone but then I’ve used diet to get back to rude health – UC has and can effect so many parts of my body and life that it wouldn’t surprise me if it effects everything mentioned in this questionnaire – hope everyone is OK – Kirsty, London, UK
• It isn’t actually hard to change your GI but it can be daunting to find a new one that will work with you. I am on my third GI and finally have a doc that I feel will do everything he can for me without pawning me off on PAs all the time.
• While it may be normal to hide your UC from your friends, I don’t think it’s very helpful. You will ultimately end up cancelling plans or not making plans with them and if they don’t understand why it could hurt your friendship. After more than 20 years of chronic illness, I just let everyone know what the deal is.

That’s pretty much it for this month’s survey.

THANK YOU THANK YOU THANK YOU to everyone who participated.  Without your participation, as you for sure know, these survey’s would be worthless, but because of you, they can end up being a learning experience and a great time for realizing that we’re never alone with UC.

Have a great month everyone,

Adam Scheuer