Colitis Q&A

Great Job, with the record participation of 912 people (plus my GI doctor’s answers to the same questions) in the August 2014 Colitis Q&A Survey!

Incredibly, this survey had participants from 37 countries (for anybody who didn’t know, UC is an International deal, it’s not just a few countries who are living with UC).

How the survey data is presented:

1. The top of this page begins with all the survey questions, and charts which show the answers and the amount of responses per answer.  (For example, 760 out of 912 people responsed “Yes” to the question – “Can you gain weight after a UC flare?”
2. Below each question, there is a response from Dr. Neil Stollman who is my current GI doctor (although I live 6,000 miles (~10,000 km) from his offices…)
3. Also included are some notes from me, which more often than not is a list of comments from participants in the survey which relate to specific questions
4. [highlight]Farther down this page, you’ll see PICTURES!!!!!! of over 60 UC’ers who uploaded their photos along with an answer/advice in question #10[/highlight]
5. At the Very bottom of this page, you’ll see a link to a separate page which includes ALL the pictures that were uploaded from over 150 UC’ers & below those pictures are all of the answers that were submitted as advice to other UC’ers in question #10.
6. Lastly, if you’re new to iHaveUC or the survey’s that I put together and you are interested in these types of things in the future, whether to participate or to simply read them right away, Join the Free Newsletter so you don’t miss anything.  The newsletter is where I announce new surveys each month.

[hr]

Question 1:

 

Yes

sometimes, especially after resolution (and/or if given steroids)

[hr]

Here’s a post with many user comments from the facebook page related to this topic that you can check out for more on weight gain:

[hr]

 

Question 2:

No

[hr]

Question 3:

Not Sure

[hr]

One of the participants included in their response to question 10 the following:  “I have received a few Remicade treatments at night and see no difference. Everything went fine.”

So, with that noted, evening/night time remicade infusions may be more limited to the place providing the infusions and their office schedule.  In quite a bit of searching online, I wasn’t able to find much in the way of studies on this topic/question.

[hr]

Question 4:

Not Sure

[hr]

One survey participant added in the comment sections this: “Q4 Doctors told me that I could not go back to remicade because I had created antibodies to it.”

I myself don’t recall anyone writing any stories on the site about this, and like most of the participants, my best guess would be in the “not sure” category as well.  With that said, my thinking is that if you had tried an anti-TNF medication which didn’t give you the results you were hoping for and you tried another on with similar results that weren’t a good match for treating your UC, then I don’t see any reasons as to why you’d be interested in going back to a medication that wasn’t really working out in the first place.  Maybe there are situations where it does make sense, and if there are, I’d love to hear about them.

[hr]

Question 5:

Yes

I do!

[hr]

Most definitely there’s been quite a few people (maybe hundreds for that matter) who have shared stories on the site about their UC, and have made a point in explaining that their disease has been very mild compared to some others of us who have had very severe UC at times(myself included).  I think a very positive thing to understand is that even though UC can for some of us become extremely severe, it is also possible for years to pass with only mild symptoms that pop up from time to time as well:)

Question 6:

 

Yes

well….not TOTALLY normal, but pretty close…i’ve taken care of a basketball player with UC who played in the NBA after a total colectomy!

[hr]

Here are a few quotes from participants in the survey who’ve had their colon’s removed:

At the six month mark following my j pouch take down surgery and doing pretty well without a colon/rectum. The best part is no more flares, meds or diet restrictions. Hasn’t been easy but getting better each week. Was an easy decision based on how sick I had gotten (childhood diagnosis, 25 years symptom free, hit my 40s and UC was kicking my ass furiously), and had a great surgeon and support network so absolutely no regrets.

And here’s another one:

I had j pouch surgery in Jan 2013 and it’s the best decision I’ve made about my UC. Now I’m almost like I was pre UC!

Yet another person’s comments:

No matter what you think is not possible with UC or Crohns, there is always a way. I recently had my colon removed for sever UC or possible crohns. I fought UC for 3 years and in the end I was in the bathroom 25-30 times a day. I did everything I could medication wise and not. I tried different diets, probiotics, fecal transplants, vitamins, supplement powders, and anythine else I found. In the end I made the decision to get my life back and had surgery. I feel the best I have in years. Even with complications after the initial surgery and another surgery and hospital stay I feel great. I was down to 115 pounds after my second surgery in a week and a half under 2 months ago and I am back up to 140 pounds which is the most I have weighted in 2 years. Dont give up hope, try everything you can, and know that things will get better.

Teddy

[hr]

Question 7:

Not sure,

depends how you define ‘poop’, i guess. Of course you still pass fecal material….

[hr]

A comment someone left on how things can happen after surgery:

Per question #7 no you cannot poop normally without a colon but you can still poop into your Ostomy bag from your stoma! It’s a different sensation but you are still “pooping” in a sense. Once you have your new “colon” aka your J Pouch then you can poop again. It’s not a colon but it’s a replacement!

[hr]

Question 8:

Yes

[hr]

The topic of hair loss has been around ever since I can remember.  And there’s been a number of stories on the topic over the years as well.  One of the earlier stories that received quote a few comments from others was from October of 2010 – read here what College Carol wrote.

Some of the comments that were placed for this question were:

• I have recently started to wean off my medication (6-MP) and I’m finding my lovely thick hair is slowly coming back. It’s no longer falling out in thick clumps in the shower as it was when I was on my highest dose of the medication. As a woman, this can be very distressing, as I’m sure it can be for men too. But when your long glossy hair that you’ve always taken for granted starts to fall away it’s hard to stay focused on the bigger picture.
• If you’re on cortisone your hair might fall out.
• Hair loss can be due to anemia or other nutritional deficiencies resulting from uc, some people might find the medications they take to treat uc can cause hair loss.
• I would clarify that hair loss is typically a side effect from use of medications and not from the disease itself.
• I have pancolitis and I have lost some of my hair due to all the medicines I take.If you are losing a lot of hair, have your iron level checked. Iron deficiency anemia, among other things, can cause hair loss. Along that same line, be careful with iron supplements–they can be very harsh on your digestive system. Doctors think they only cause C. In my case, the 2 different ones I tried gave me the worst pain and D I have ever had. I am struggling badly with anemia right now.

[hr]

Question 9:

Yes

[hr]

I myself eat food and meals early in the morning and late at night.  Of course I don’t try/plan to eat right before going to sleep, but I’m sure there’s quite a few nights where I’ve had something to eat or drink within an hour or two of falling asleep.  But, I was pleasantly surprised to see all sorts of different thinking and ideas on this particular question from those who left personal comments.  Here’s a few:

• Yes, you can still eat late at night when you have colitis; but why would you want to? It is not a healthy partice to eat and go to bed on a full stomach even when you do not have colitis.
• I personally try not to eat late at night. Presently the only medication I am using if whole food through a paleo diet along with vitamins and other things recommended on your site.
• I feel very strongly about a NO answer to question No. 9. I have proven to myself, time and time again, that eating late at night is guaranteed to cause discomfort and depending on how late and how much I have eaten…will cause exteme pain. The only solution when this happens is to sleep in an upright position. It can help. It is just better to not eat anything for several hour before going to bed.
• You have to make a decision between “can I do this?” and “should I do this?’ Eating late at night is not advisable even with a normal-functioning colon.
• Wouldn’t recommend eating late at night as gut motility can disrupt sleep.

[hr]

Question 10:

Do you have any helpful advice which relates to any of the questions above?

The answers below are the exact answers for the people who participated who included a picture of themselves as well as an answer for this options question (#10)

For me, when I come out of flare (which can be bad for the first month and then stabilizes somewhat but lingers for a few months to 1.5 years), I loose weight (15-20 lbs). It seems like it can take four months to a year before I seem to go back to what would appear to be normal metabolism for my weight. this takes some getting used to, as I am accustomed to eating whatever and not having weight issues.

When I was really sick with pancolitis (colitis throughout my entire colon) back in 2008, my hair did fall out some. I was using hot rollers to hide the fact that my hair seemed thin. I also didn’t have any monthly menstrual cycles for a year, but my doctor. figured that was because of the health crisis. It’s been six years now and I have been on the SCD diet for most of that time and both are back to normal.

Generally when in a flare, if I eat past 6 PM I tend to have to get up more frequently through the evening. I typically go to best at 10 or 11 PM. It also matters what I eat. If I am famished, I typically will have some plain protein like a burger patty or hard aged cheese. I stay away from anything fibrous (vegetables) or anything that can have a laxative type effect if eaten in larger quantities (such as fruit) – with everything slowing down as we move into sleep time, with a flare, my body has always been way more sensitive in digestion.

[hr]

Do stress release activities daily (I.e) yoga, play w/pets, watch a comedy) to help from getting flares as stress is a HUGE FACTOR.

[hr]

Stay positive

[hr]

Used diet instead of HUMIRA and am so happy to be in remission for 6 months!!!

[hr]

Avoid time stressed situations, like running late to work or for the bus, that’s kind of stuff trigger my bowel. So I make sure I’m always 10-15 minutes ahead. Also as student I try to finish my papers not at the last minute like I used to do before but like until the middle of the time frame they gave us.

[hr]

Why would you want Remicade infusions any time of the day? Go on the SCD. Far less harmful and Hello, it heals you.

The drugs can make your hair fall out and maybe the stress of having colitis, but not the actual colitis itself.

If you can still eat, you can still poop.

You can eat late at night but only if you don’t have to go to work the next day because your guts will be in turmoil for a few hours into the night and you will be too tired to eat from getting up every 20 mins to go to the toilet.

May God abundantly bless you and heal you, in Jesus name, Amen. Chin up.

[hr]

Q4 Doctors told me that I could not go back to remicade because I had created antibodies to it.
Q8 I don’t think colitis causes your hair to fall out , but that doesn’t mean it won’t fall out naturally :-)

[hr]

No matter what you think is not possible with UC or Crohns, there is always a way. I recently had my colon removed for sever UC or possible crohns. I fought UC for 3 years and in the end I was in the bathroom 25-30 times a day. I did everything I could medication wise and not. I tried different diets, probiotics, fecal transplants, vitamins, supplement powders, and anythine else I found. In the end I made the decision to get my life back and had surgery. I feel the best I have in years. Even with complications after the initial surgery and another surgery and hospital stay I feel great. I was down to 115 pounds after my second surgery in a week and a half under 2 months ago and I am back up to 140 pounds which is the most I have weighted in 2 years. Dont give up hope, try everything you can, and know that things will get better.

Teddy

[hr]

Hair falling out and late-night snacking? Tough questions.

[hr]

be attentive to how your body react to foods. bad food becomes no go or you gogo…

[hr]

Wouldn’t recommend eating late at night as gut motility can disrupt sleep.

[hr]

colitis is and up and down fight.you just roll with what makes you feel the best.

[hr]

the best thing iv taken for my uc is the remicade.iv tryed everything u could think of
and this is the best ever. my uc hasent flared up in over a year.

[hr]

I have gained weight after a flare but very slowly. Colitis is not contagious. I have received Remicade infusions in the hospital and at an infusion center at any time of the day or night. Most of the time you will get a dose of benadryl in either pill form or by IV. I challenge anyone to keep their eyes open after IV benadryl. I have asked my doctor about Humira. Specifically if I could stop Remicade, the answer was no and also, can I go on Humira if Remicade stops working. There is a 10% chance of Humira working for me after Remicade. Also, if you stop Remicade it may not be as effective if you need to resume Remicade. I am in Remission, no syptoms, no diet limitations, regular bowel movements. I feel cured. I have asked my GI Doc if I can stop taking Imuran daily and Remicade infusions every 8 weeks and he has said no. Remicade and Imuran together took about 8 mos to achieve semi remission and about a year for total remission. Without a colon you poop in a bag (ileostomy). My hair fell out during my worst flares because of the lack of nutrition. I have colitis, I eat late at night whenever I want to. I am in remission, I am not cured. I am knocking on wood.

[hr]

High doses of vitamin D have helped me tremendously.

[hr]

I feel what works best for me,is having smaller meals more often during the day.especially fruits as snacks.

[hr]

Every person is different. I personally don’t recommend eating late at night (specifically before bed) for any person. However, it is possible….potentially painful, but possible. I’m not sure if hair loss is specific to the disease or more likely due to medications.

I’ve only had Remicade infusions during the day, during clinic hours at the hospital. So, I’m not sure if time of day matters………

[hr]

You have to make a decision between “can I do this?” and “should I do this?’ Eating late at night is not advisable even with a normal-functioning colon.

[hr]

I had j pouch surgery in Jan 2013 and it’s the best decision I’ve made about my UC. Now I’m almost like I was pre UC!

[hr]

1) Just like you loose weight during a flare, after it is over, you can still gain weight. When I was 22 and diagnosed with Crohn’s after a massive resection, I was told to eat or die. I went down from 190 lbs to 135 lbs in 4 weeks. The doctor told me in no uncertain terms that I was going to die or I would have to go through life with an aortic shunt to feed my body. I began to eat. Now at 65 I weigh 280 lbs and am fighting to get about 100 lbs off. Go figure.

2) You can absolutely not get colitis or Crohn’s from your partner. 5) Yes you can have a mile case of colitis or Crohn’s. 6) While I still have my colon, I have debated whether to have it removed or not. I have so many friends without and they do everything the want, ever sex. 7) You can still poop without a colon but not in the same form. 8) Your hair will fall out whether or not you have colitis or not. 9) You can eat whenever you want.

[hr]

It’s all a ” crap” shoot!! This is an up and down disease, I treat my body right and hope always for the best

[hr]

Diet and exercise have drastically helped me. When you are at your worst just know that things will get better.

[hr]

My helpful advice would be for anyone that hasn’t tried the scd diet or paleo diet to give it a go. I’m 9 months on diet now and med free since February!

[hr]

Keeping a daily log/diary of what I eat and subsequent bowel activity is helpful to track meta patterns. It’s motivating to see feedback that my diet plays a factor.

[hr]

You can still eat late at night, you might just have terrible stomach issues and pooping issues depending on your body.

[hr]

I’ve been on your site for just a little over a month. Many medications are discussed, however, I haven’t seen anything related to Lyalda which is the med I’ve been on since April. I first found out about my UC in February 2014. My father had colon cancer and I was told that UC is hereditary. Not sure if that’s true.

[hr]

At the six month mark following my j pouch take down surgery and doing pretty well without a colon/rectum. The best part is no more flares, meds or diet restrictions. Hasn’t been easy but getting better each week. Was an easy decision based on how sick I had gotten (childhood diagnosis, 25 years symptom free, hit my 40s and UC was kicking my ass furiously), and had a great surgeon and support network so absolutely no regrets.

[hr]

The loss of hair typically has to do with how sick you are. Your body puts energy into fighting the disease and hair is not a vital “organ” it must keep alive. It often happens after three months of severe illness. Of course medication can play a role in this too, but it’s not always the main culprit. I learned this while going through a horrible 3.5 year flare.

[hr]

I was told by my GI that the first biologic always works the best and as you change to another it is never as effective as the first. Humira and Remicade both caused allergic reactions for me. I think that was God’s way of saying He didn’t want me pumping medicine in my body for the rest of my life. SCD is a challenge, it makes life difficult at times, but it is really safest and healthiest way to treat your IBD, if you can do it, there is a certain “it” factor that it takes to stick with the diet. We can all do it, support is huge, and commitment to a healthy lifestyle.

[hr]

Most of the bloating receds when the flare is reduced

[hr]

watch what you eat and when. try to eliminate alcohol, walking really helps. drink lots of water.

[hr]

No matter how low you feel during a colitis flare, there is always a light at the end of the tunnel. Many times I have felt like giving up, but I’m so glad I didn’t.

[hr]

I honestly don’t know the answer to most of these questions due to lack of experience

[hr]

Every item listed above…everyone is different!

[hr]

The best advice I can give, Is to get the book “Breaking the Vicious Cycle” about the SCD Diet, (Specific Carbohydrate Diet). I had been in Prednisone, 40 mg. day for almost 5 months when I read the book and started the diet. I have now been in complete remission for 2 weeks. It…..really……works.

[hr]

I personally try not to eat late at night. Presently the only medication I am using if whole food through a paleo diet along with vitamins and other things recommended on your site.

[hr]

My ulcerative colitis seems mild as only get the blood: no cramps or pain and one bowel movement in the morning which is loose. Don’t know what ‘remicade’ is. I refused to go on any medication: trying SCD and juicing only which is making a big difference.

Thanks Adam.

your site is great and u down to earth

JacquelineMullally

[hr]

I have moderate UC. Know your trigger foods. For me, onion (especially raw) and hot pepper seeds wreaks havoc on my colon. My flares generally subside in 24 hrs.

[hr]

It’s hard for me to sleep at night after a big meal so eating before going to bed isn’t something I do.

[hr]

I would not advise eating late at night……I think the more you eat the more you will have to go to bathroom…..six small meals during the day really does work.

[hr]

Colitis doesn’t have to ruin your life. Work on the reasons why you got ill and then you can work out how to get well again.

[hr]

Had it 9 years and it sucks. My advice is how do ask about some sort of pain management with out the GI and his PA making me feel worse, “Take an acetaminophen, Chris. And do what you gotta do.” WTF does that even mean? -peace

[hr]

cannabis releves stress wich releves colitis

[hr]

I just had a colonoscopy done, and my doctor said that I have mild colitis. I have now had ulcerative colitis for 11 years and this year I feel like my hair is falling out a lot. Experiencing low iron constantly so I find it hard to tell whether it is my iron levels that is causing my hair to fall out or if it is my colitis. I wish I could find out which one it is.

[hr]

Living a normal life is possible.

[hr]

First I just want to say that I honestly don’t know the answers to most of these questions as I was diagnosed just last November. There’s a lot that I still need to learn about this disease. The one thing I’d say that could be helpful is to watch what you eat and listen to your stomach. I have been keeping a food journal by writing down what I eat and making notations of foods that irritate my stomach. This is how I know what to stay away from.

[hr]

It’s not a good idea to eat at night while in a flare. I believe the reason we lose hair is not because of colitis itself, but because of the medications for colitis. Our bodies still produce waste so we need a way to get rid of it, hence a colostomy bag or j-pouch after having the colon removed. My colitis started out as mild so, yes, we can have mild colitis. Our bodies produce antibodies to Remicade so actually, we can go back on Remidade after being Humira but we should not be on Humira at the same time and only if an anti-histamine is administered. Also, remicade infusions shouldn’t be administered at night because it takes several hours. Since colitis is an auto-immune disease, it isn’t contagious.

After my last flare, I lost 14 lbs. I craved protein, mainly meat, even though I don’t eat it, but I did eventually gain all my weight back, darn it.

[hr]

I had my colon removed a year and a month ago and all I have to say is…..BEST DECISION OF MY LIFE!!!! Yes I still poop, and my life is normal! Just went to Vegas! Living my life again for the first time in years! No meds! Working out again, looking better than I have in forever and feeling fantastic! I probably poop….2-4 times a day. It’s awesome! No pain, no urgency, no feeling like poop! Lol! I’m me again and I am grateful for my jpouch!!!! I kicked UC’s butt!

[hr]

Hair falls out as a result of medication, not the disease.

[hr]

If you are new to UC no matter how bad your UC is know that you are not alone. Eventually some combo of meds and diet will probably help you get into remission. Many have had successful surgery also. Tons of info and stories on this site. Can’t thank Adam enough!

[hr]

I tend to gain a pound or two after a flare up, but I have to be mindful of the food choices. I have received a few Remicade treatments at night and see no difference. Everything went fine. If my schedule has me eating late at night, i choose something lite and will take antacids and sit up for a while before going to bed.

[hr]

Everyone’s body is different and everyone will react to treatments differently. It will take time with some trial and error until you find what works for you. It will be difficult with lots of struggles and a lot of self doubt, but hang in there… It gets better!

[hr]

I have a mild case of UC. It doesn’t affect my day to day life much. I’m thankful it can be managed with medication.

[hr]

everyone/everybody is different-listen to your body and use the good common sense God gave you!!

[hr]

I feel with some of the medications you can defentley gain weight!
Prednisone, and imuran

[hr]

You can eat late at night, but you might pay for it the next day or day after. Super regulated nutrition has been a fundamental building block in constructing a life w/ UC. Since I’ve was diagnosed with left sided UC, my weight has fluctuated from a hefty 260 to a leaner 225 and all over the middle of that range. However, once I committed to a regular eating schedule, logged eating habits for a couple months, dumping certain foods, and 95% giving up alcohol (occasional beer/cocktail w/ dinner) i have maintained a paltry 230. My goal weight is 200 lbs….i’ll get there. After reading all the stories on here, and observing my own problem, I would classify myself as a mild case of UC, although I realize that I can make it worse with bad choices over the short and long term.

[hr]

Appreciate the great days !

[hr]

Hang in there! Use your down times to grow yourself so when you do feel better, you can make a difference in someone else’s life.

[hr]

Although you can eat late at night usually best not to if flaring! I’ve only really had hair thinning due to the drugs I take.

[hr]

You can do anything if you want to!! Even with this horrible disease!

[hr]

Be happy

 

[hr]

 More Info Available here:

To read all the colitis advice that was submitted by all 150 plus people who entered comments to Question #10, read the additional page with the full data available here or click this link.

-Adam Scheuer