Is this a flare? Dont know what to do.

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
Courtney508
Posts: 2
Joined: Mon Mar 25, 2013 9:35 am

Is this a flare? Dont know what to do.

Post by Courtney508 »

Hello everyone. I am new here and have come looking for advice. I think I am having a flare up but I’m not sure and I’m not sure what I should do about it. Symptoms: Frequent watery diarrhea (4-12 times a day), fatigue, muscle strain/tiredness, very bloated and lower stomach has this odd feeling I’m not sure how to describe.


Here is some background about me. I am 28 years old and I was diagnosed with ulcerative colitis around age 10. I first started having symptoms (constant diarrhea) at the age of 9. After about a year and a half of tests I was diagnosed (via colonoscopy) with ulcerative colitis. My last colonoscopy in 2008 said I had collagenous colitis. I had no idea it could change? I’m still not sure what to believe. I’ve been told my whole youth life I had ulcerative colitis and now this new GI doc said collagenous? Anyway, from age 10 I was on several different medicines and I don’t remember each. I started out on liquid sulfersalazine because I couldn’t swallow pills. Boy, will that stuff make you learn real fast!! Mostly I was on 6 pills of asacol a day. The medicine ended up causing a whole bunch of problems for my liver. I ended up near liver failure, got mono, jaundice, EB virus and some other stuff I can’t remember. And I missed about 2 months of the 7th grade because of it. Anyway, it was decided that if I could handle it, then we would avoid medicine for a while. It was also figured out around this time that a lot of my extreme lower abdominal pain was actually caused by ovarian cysts. I was put on birth control and that solved so much of my pain! Fast forward into my teenage years… For me, I hated taking pills! I really didn’t mind the diarrhea. It was normal for me. I didn’t know any different. Sure, when my diarrhea became extreme it sucked and I would go on steroids or get hospitalized. But for the day to day regular old diarrhea it was not worth it, for me, to be on loads of pills that just make me sick. The last time I was hospitalized I was 16/17 years old. I eventually stopped going to my pediatric GI because for the most part it wasn’t a problem. My last flare up was in 2008. I decided it was time to find an adult GI doc. She told me my flare up was caused by all the ibuprofen I was taking after my c-section. I had no idea ibuprofen did that! So glad my new GI doc told me. I had a new colonoscopy, it was over due. This is when I was told I had collagenous colitis. I had never heard that term before. I was always told I had UC. Things were back to “normal” at this point though. So, I decided to go on my way and she told me that if I ever needed to come back that I should come in. Fast foreword to now… I quit smoking 61 days ago. I know nicotine is supposed to suppress colitis. My colitis is back and back with a vengeance. I started smoking when I was 14… I wonder if that’s why my colitis was always so mild… or why it “changed” from UC to collagenous?. It’s been a nightmare. At minimum I have 4 completely watery bowel movements. Yesterday I had 8 or 9, and the day before 6. I’m tired. I’m so very bloated. And I have the weirdest feeling in my lower stomach. They only way I can describe it is that a battle just occurred and the beaten soldiers are trying to care for the wounded at the same time as preparing for the next battle.

I finally called the doctor today. Her next availability is sometime in May. I told the woman I could not wait that long and she had the nurse call me. She squeezed me in for April 4th but told me that I probably need care before then if I am having a flare. She said to either go to the ER or to my primary care. I’m not even sure that this is a flare because it has been so long. Going to the ER seems like an overreaction. The nurse said she is not concerned so much about dehydration as she is with the inflammation. I’m not even really sure what she means by that. I was so young at most of my GI appointments I don’t remember much. And my primary care doc is a very nice man but I just see him for colds. I have always gone to specialists since I had so many problems as a child so I was never very choosey when I picked my primary care doc. I just don’t think he would have any idea of what to tell me except to go see a specialist. And that appointment is two weeks away.

I am sorry for the long read but I would appreciate any thoughts or feedback.

Thank you,
Courtney
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Courtney,

Welcome to the group. I'm sorry that it takes so long to get an appointment to see a doctor. It's not possible for UC to turn into CC, so there are 2 possibilities:

1. Your UC is in spontaneous remission, and you have developed CC (unrelated to the UC, and probably caused by the heavy ibuprofen use and/or stopping smoking).

2. You never had UC in the first place — you had CC, but it was misdiagnosed as UC.

Did you ever have any bleeding with the UC? If so, then you definitely had UC.
Courtney wrote:I quit smoking 61 days ago. I know nicotine is supposed to suppress colitis. My colitis is back and back with a vengeance. I started smoking when I was 14… I wonder if that’s why my colitis was always so mild… or why it “changed” from UC to collagenous?
Yes, there are medical research studies that show that smoking is definitely protective of UC (but many/most doctors choose to ignore that fact). No official medical research has ever been done to verify whether or not smoking is also protective of CC/LC/MC, but we do know that many people develop MC soon after they stop smoking. I have a theory that the reason this happens is because stress is the primary environmental factor that predisposes us to the development of MC (and virtually all autoimmune diseases), and whether we develop MC, UC, or some other autoimmune disease as a result, is determined by our genes. And as we all know, stopping smoking is an extremely stressful event.

After many years of sharing experiences about both failed and successful treatment methods on this web site, here is what we have found to provide the surest and safest way to lasting remission:

1. Avoid all sources of gluten (gluten is the primary food that causes the inflammation that causes inflammatory bowel disease and other autoimmune diseases).

2. Avoid secondary food sensitivities that are often associated with gluten sensitivity, such as dairy, soy, and for some of us, eggs.

3. Minimize fiber in the diet — the intestines are already inflamed and hypersensitive, so fiber irritates them and perpetuates the inflammation.

4. Minimize sugar in the diet, and avoid all artificial sweeteners.

5. Eat bland, easy to digest meals, until remission arrives. That means that any vegetables should be peeled and overcooked. Fruit should be avoided when in a flare, except that some of us can tolerate bananas.

After we are in remission long enough to allow a significant amount of healing for our intestines, then we can slowly begin to reintroduce some of the foods that we have been avoiding, but most of us have at least several food sensitivities that are permanent, beginning with gluten.

The reason why we suddenly develop these food sensitivities is because when the genes that predispose to CC/LC/MC are triggered, the genes that predispose to gluten sensitivity are also triggered at the same time.

Please be aware that many GI docs still do not realize that food sensitivities have anything to do with MC, and they will argue that it is a waste of time to change our diet. They are wrong. Many of us here have been in remission for years (some as long as 10 years), by diet changes alone, but if we slip up and eat any of the foods to which we are sensitive, we will have a reaction that can result in anything from a few hours of diarrhea, all the way up to a full flare. So careful diet management is the key to successfully controlling this disease (and treatment by diet avoids all the risks associated with the drugs that are typically prescribed to treat this disease, which is very important for long-term health).

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Leah
King Penguin
King Penguin
Posts: 2533
Joined: Thu Feb 02, 2012 10:16 pm
Location: San Francisco Bay Area

Post by Leah »

Welcome Courtney.

Yes, you are in a flare.... big time! CC ( a subset of MC) is forever, so we can flare at any time if either stress, certain drugs, or food triggers it.

Tex is our expert and has written a book that you may want to buy. Just click on the book's picture in the upper corner of this page. It explains so much.

As he has said.. diet is EVERYTHING. I also have CC ( dx a little over a year ago). I went on a drug called Entocort ( budesonide) right away. It helped almost instantly for me. The thing is, that if we don't address the diet at the same time, when wean off the drug, relapse is likely. Tex has outlined the foods to avoid for now. It seems like a big list and the task is quite daunting, but if you can get through the first 6 months or so and give your gut time to heal, then you can test some of these foods back in. I ate mostly meats ( chicken, beef, pork,fish...etc.), rice, COOKED veggies, broth/veggie soups ,Chex cereal with almond milk, eggs, herbal tea, unsweetened apple sauce, corn tortillas, rice cakes with almond butter with a little jam...that's about it. No fun, but it works!

Fast forward. I have added many things back into my diet starting after about 6 months.... salad, raw veggies, beans, small amounts of fruit, dark chocolate....but continue to be gluten and dairy free and mostly soy free. I was completely off the drug in six months and haven't had a full flare since ( just a day here and there if I eat something I shouldn't)

So, it can be done. I'm sure many others will chime in.
Let us know how your doctors appointment goes. I hope you feel better soon
Read as much as you can on this forum. So much information.

Leah
jgivens
Gentoo Penguin
Gentoo Penguin
Posts: 315
Joined: Thu Dec 27, 2012 1:35 pm
Location: Kalamazoo, MI

Post by jgivens »

Wow, Courtney. Sounds like you have been through so much already that this is just another chapter for you. I am so sorry. Leah and Tex are correct though---you have come to the right place. Though I am fairly new (diagnosed with CC in December) to all of this it is easy to be overwhelmed with the information and I am constantly second-guessing what I have to eat.

Believe it or not, one of the treatments for the constant diarrhea is 2 tabs of Pepto Bismol four times a day. That is what my gastroenterologist prescribed for me and it worked after 15 days and with diet. I am still trying to figure out what I am sensitive to besides gluten and dairy products so I don't do sugar or soy or fiber. One of my friends jokes about what flavor of "gruel" I might be making for the week. I do eat a lot of broth.

The Pepto worked so well that now I am constipated. Quite often we will go from one end of the continuum to the other. I am working on a happy balance and I have yet to see it. I know what you mean when you say you were used to the diarrhea. If it was only a couple times a day, I did not mind. It is when it picked up speed and became impossible to function away from home that I couldn't abide it any more. Now I don't like the constipation because it makes me worry that I have not achieved remission and there must be something that I am eating causing inflammation.

Know that this is not endless and there is hope--patience is key in finding a resolution to the problem. I hope that you are in a good part of the country for gastroenterologists. See Tex's list of recommended doctors who people on this board have had positive experiences with. Most of all, welcome to our "tribe".
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
ladyathome
Adélie Penguin
Adélie Penguin
Posts: 101
Joined: Thu Feb 14, 2013 10:08 am

Post by ladyathome »

Hi Courtney!

Finding this site changed everything for me! I wish I had found it 3 years ago when I was diagnosed! I read everything I could on here. Use the SEARCH and ask questions; you will be very encouraged by these knowledgeable supportive people; they really understand what you're going through and have great advice.

I even gave this site to my doctor so she could learn! She got back with me and was very impressed.

Diet is everything for me! Many have had stool tests and used meds, but I have not. I did the Pepto Bismol protocol and concentrated on cutting the potential foods that most people on here have issues with. I cut gluten first, but it wasn't enough. I have now removed Dairy, Eggs, Soy, Grains, Beef, and Sugar. I had all the symptoms you talked about as well as severe heartburn and belching, but I can tell you that I feel completely normal again. The food I cut is nothing compared to feeling well!
Courtney508
Posts: 2
Joined: Mon Mar 25, 2013 9:35 am

Post by Courtney508 »

Wow. Thank you all for your heartfelt replies. I appreciate your personal notes and suggestions.

Honestly, I never gave diet much weight. My pediatric GI doc had suggested it when i was first diagnosed. But you cant tell a 10 year old not to eat ice cream! I think for the most part my colitis has been calm due to the smoking. Now that i am not smoking i see that certain foods are sending my belly into frenzy mode!

Each of you have mentioned gluten. About 4 months ago i asked my pcp for a gluten sensitivity test because i had read an article about gluten and colitis. My blood test cam back negative. Do you still suggest avoiding gluten even though i am not sensitive to it?
User avatar
tex
Site Admin
Site Admin
Posts: 35072
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Courtney wrote:Do you still suggest avoiding gluten even though i am not sensitive to it?
Unfortunately, many doctors assume that the blood tests that they use to screen for celiac disease can actually be used to rule out gluten sensitivity. The reality is that while they can be used to diagnose gluten sensitivity (in the form of celiac disease), they definitely cannot be used to rule out gluten sensitivity, because they are only capable of detecting fully-developed celiac disease. Those tests will not detect any other earlier stage of the disease, nor will they detect gluten sensitivity if the gluten-free diet has been adopted, nor will they detect gluten sensitivity caused by anything other than celiac disease. IOW, you have to have a celiac gene before those tests will detect gluten sensitivity, no matter how severely sensitive to gluten you might actually be. Virtually all of us have genes that predispose us to gluten sensitivity, but only a fraction of us have a celiac gene. That means that virtually all of us can be sensitive to gluten, but the celiac blood tests will only work for a fraction of us, IF we happen to have fully-developed celiac disease.

Some of us also have celiac disease in addition to MC, and for those individuals, the blood tests will show a positive result. For everyone else, they show a false negative result. The bottom line is that the those blood tests are worthless for detecting the type of gluten sensitivity that we have with microscopic colitis. So yes, unless you order the stool test offered by EnteroLab, and they show a negative test result, you definitely should assume that you are sensitive to gluten and you should adjust your diet accordingly, if you want to resolve your symptoms.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
ladyathome
Adélie Penguin
Adélie Penguin
Posts: 101
Joined: Thu Feb 14, 2013 10:08 am

Post by ladyathome »

Unless you have fully-developed celiac disease, those tests that you will have on Friday will yield negative results. The standard medical tests used by most doctors are not capable of detecting the type of gluten sensitivity that most of us have associated with microscopic colitis. Those tests are only capable of diagnosing fully-developed celiac disease, so they are worthless for detecting any earlier stages of the disease, or any other form of gluten sensitivity. Most of us here determined our food sensitivities either by submitting stool samples to EnteroLab in Dallas, TX, or by careful trial and error testing, beginning with an elimination diet
Tex wrote the above in another past post.

About a year and a half ago I had a DNA stool test done called GI Effects with Metametrix Lab and my results were negative for gluten as well, however I know gluten is a huge problem for me.

I want to do the EnteroLab testing Tex and others on here recommend soon to find out which of the other foods I react to the most, but, as I said, IMO, eliminating all the known offenders is a small price for me to to pay to feel well until then.

Educate yourself and be very careful, gluten hides in places you never thought of. Ketchup, SoySauce, packaged grated cheese, beauty products. Eating fresh unprocessed foods and using gluten free soaps, shampoo, and make-up is the only way I am sure to steer clear! Also, be very careful eating out.

The Pepto-Bismol protocol helped me as well, but I started getting constipated so I cut it to 6 per day then down to 4 and eventually 2 and none after about 4 weeks. Everyone is different, and my flare wasn't as bad as some flares in the past when I started the protocol. I'm a firm believer in listening to your own body.
tlras
Rockhopper Penguin
Rockhopper Penguin
Posts: 605
Joined: Sat Aug 18, 2012 8:15 pm
Location: Houston, TX

Post by tlras »

Hi Courtney,

So sorry you've had to deal with colitis for so many years and at such a young age. And it's too bad that no one has ever mentioned diet changes to you. My GI would have never mentioned diet to me if it weren't for my blood tests being positive for Celiac. If I didn't have Celiac, he probably would have never told me to go GF. And he has never mentioned going DF which he should have as it's a very common cross reactive food for Celiacs. I've learned everything from this forum. It's a Godsend. Read up all you can.

I gave up anti-inflammatories, my once-a day alka Seltzer (have issue with hearburn as well), gluten, dairy, raw fruits and veggies, fiber, beans, etc., like others have mentioned. I opted for the Pepto Bismol protocol as well and weaned off it my 3rd month. I took 7 pills a day as 8 made me constipated. I've now been off Pepto since December 10th and doing quite well. I can tell when I react to a food (very mild so far) and just simply hold off on it for a while. I'm now able to add in some beans and more veggies ( not so overcooked now).

Please keep us updated on how you are doing....you've suffered with this way too long.

BTW....gluten is a very high-inflammatory food. Best to take out of our diets for good!

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
ant
Rockhopper Penguin
Rockhopper Penguin
Posts: 1676
Joined: Sun Jun 28, 2009 11:59 pm

Post by ant »

Hi Courtney!

Just wanted to say Welcome. Nothing to add to the advice you already have got.

All our journeys are better for knowing that others, from all walks of life, all ages and many places are traveling and helping each other on the way.

Best wishes on your road to remission, Ant
----------------------------------------
"Softly, softly catchee monkey".....
Eric
Adélie Penguin
Adélie Penguin
Posts: 52
Joined: Tue Apr 02, 2013 8:55 am
Location: FL

Post by Eric »

hang in there
User avatar
Marie
Adélie Penguin
Adélie Penguin
Posts: 61
Joined: Sun May 27, 2012 8:23 pm
Location: FL

Post by Marie »

Hi Courtney,

I wanted to welcome you to the group as well. As a mom of two (under the age of five), I can completely empathize with you. You must have a kid because you mentioned having a c-section. Isn't it ridiculous that the doctors send us home (regardless of vaginal birth or c-sect) and tell us to take 800mg Motrin/Advil per day??? Those NSAIDs wreak havoc on our intestinal walls. Of course I was clueless when I took them. I really think physicians should double check the patient's medical history before suggesting such use.

Though our journeys have been different, my symptoms began during pregnancy (28/29 yrs old, diagnosed in 2/2009 w/ celiac and 2011 w/ LC), I can truly understand everything you expressed... especially: "The only way I can describe it is that a battle just occurred and the beaten soldiers are trying to care for the wounded at the same time as preparing for the next battle." No one should EVER have to know that pain.

I really hope you feel better soon!

I'm a click away if you need to vent. Congrats on kicking the smoking habit!

:hug1:
User avatar
Jazi
Adélie Penguin
Adélie Penguin
Posts: 171
Joined: Tue Mar 26, 2013 6:51 am

Post by Jazi »

Courtney508 wrote: .

But you cant tell a 10 year old not to eat ice cream! I think for the most part my colitis has been calm due to the smoking. Now that i am not smoking i see that certain foods are sending my belly into frenzy mode!
Of course you can, especially if it means your child's health is at stake.

Diet is everything and I have learned this not because of my experience (I'm too new at this) but because as soon as my daughter went gluten free last summer, all her problems vanished. She was never diagnosed with anything because doctors (not all) do not do the necessary testing. She decided to do it on her own and has much success. I admire her courage.

Good luck with everything you do and congrats on the quitting smoking! Never go back!! :smile:

Oh and I'm on day 5 of Entocort and I already notice a difference.
Joanne

"A Journey Of A Thousand Miles Must Begin With A Single Step"
User avatar
Gloria
King Penguin
King Penguin
Posts: 4767
Joined: Sat Jul 07, 2007 8:19 am
Location: Illinois

Post by Gloria »

Joanne wrote:Oh and I'm on day 5 of Entocort and I already notice a difference.
:thumbsup:

Gloria
You never know what you can do until you have to do it.
Post Reply

Return to “Main Message Board”