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Why am I flaring up again?

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Ulcerative Colitis
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Posted 10/9/2008 1:23 AM (GMT 0)

Hi, all.  I'm new here, so please bear with me.

 

I'm 31 years old.  I'm Caucasian, roughly 5'10", I weigh approx. 190 lbs., and I live in Pennsylvania.  I don't smoke, and I drink very rarely.  I'm active, I run, bike, work out, play softball...  I'm healthy, though I've been suffering with colitis for 10 years.  I've always been able to link flare-ups with times of extreme stress in the past.  My student teaching experience led to a major flare-up.  Stress at work has caused flare-ups.  My father passing led to another flare-up (that was just last winter).  I get a colonoscopy every year, and whenever I get a flare-up, I'm put on steroids for a few weeks, and my asacol prescription is hiked up.  I'm currently taking three pills three times a day.

 

I've had a great, stress-free summer, my school year has been wonderful so far, and I'm not really stressing over anything at all.  And yet, now I'm flaring up, waking up at night having to go badly, barely making it to the toilet.  It's always liquid, and it looks like cherry Kool-aid every time.  This has been going on for the last two weeks, and it's the first time in 10 years that I can't look back and say, "This must be why, because I was stressing over this or that."  Even while taking 9 asacol pills each day, I'm flaring up again.  It's very frustrating.  I've always thought that my flare-ups were tied to stress, but this time has to be different. 

 

My doctor has never really had any answers.  No doctor has ever told me anything about what I shouldn't be eating aside from "No aspirin," so I never take Aspirin.  It's always more pills when I get a flare-up.  The last time I saw my doctor was last March, when my last flare-up went away after a cleansing solution treatment, a colonoscopy, steroids, and more asacol.  I haven't contacted him since the bleeding has returned, simply because I don't want to go on steroids again.  In fact, he's even said that he's not really sure if I have Crohn's disease or colitis (which I known is a common confusion).  He's the second doctor that I've dealt with, and the first one really didn't have any answers either.

 

Could it be my diet?  I drink Diet Coke exclusively.  I eat cereal often, mostly Apple Jacks lately.  I've been eating a lot of tuna lately.  I also eat grilled cheese (Swiss) with Campbell's tomato soup.  I stop at Arby's about every other week, and I order their turkey and bacon sandwich, curly fries, and a Diet Pepsi, but I don't frequent any other fast-food places.  I also have a die-hard addiction to Starbucks hazelnut lattes.  I don't eat sweats; I don't eat cookies, cake, or candy except on very rare occasions.  I eat pasta every so often.

 

Really, I'm tired of these flare-ups.  I'm also afraid that I will eventually contract colon cancer and either suffer a bag or death because of this.  I look at older people, and I wonder if I'll live that long if I continue to bleed out pints of blood everyday.  The idea that the contents of my colon could be seeping into my bloodstream is something that terrifies me.  Does anyone have any advice?  Could it be my diet?  Should I find another doctor (despite getting the same treatment from two different doctors already)?  Should I clean out the colon with a cleansing solution and not eat for a day?  Should I give in and go through the colonoscopy/steroids again?  Am I just doomed to suffer flare-ups for the rest of my life with no warning and no reliable way to combat them?

 

Maybe I just need to communicate.  Any advice is dearly appreciated.

 

Thanks.

Post Edited (Crust) : 10/8/2008 7:38:03 PM (GMT-6)

Posted 10/9/2008 2:03 AM (GMT 0)
My naturopath says I shouldn't eat the same food but every four days. "Food" for thought. Maybe you would benefit from seeing a Naturopathic doctor, check food sensitivities. Otherwise, everyone is different when it comes to food, so I respect a doctor that doesn't generally say this or that food is taboo. Have you tried probiotics? It seems GI are indifferent about them, but not the folks on this message board and not Naturopaths, they are important. I find not eating to be very irritating so I would not fast or cleanse voluntarily, I do better to have a least a little something to eat.
Your flare might also be seasonal, some of us experience that. Stress doesn't affect my gut, but change in seasons seems to, go figure.
I don't worry about the blood, my body just makes more. I might bleed daily for years but am strong except for this (no one would suspect). The doctors order colonoscopies often enough to catch pre-cancerous polyps. So please don't worry...but we are doomed to suffer some.
Posted 10/9/2008 2:20 AM (GMT 0)
Food doesn't cause flares. Stress can. But remember, the natural course of UC, with or without treatment, is one of remissions and flares. Sometimes flares come for no identifiable reason, and leave the same way.

Unfortunately, as much as we would like to feel we have control over our bodies, with this disease we just don't. UC comes and goes as it pleases. It teaches us patience and acceptance, I guess, but I know we'd all gladly trade those lessons for no more flares.

I think your best bet is to call the doc, bite the bullet and take the pred for a few weeks in order to get healthy again. The only way to assure no more colitis flares is to have the colon removed, and it doesn't sound like your disease is nearly serious enough that you want to consider that.

Good luck.
Posted 10/9/2008 3:51 AM (GMT 0)

First, get a doctor that can diagnose you with chrons or colitis, it will make a big difference about how to treat it.   There are very high confidence tests that can prove one way or the other to about 95% accuracy. 

Secondly.. seasonal my friend!  I have never, ever had a colitis outbreak in late spring or summer regardless of how stressed/sick i am(maybe i should move to FL!!).   Once the end of september and october rolls around, any stress, or illness, will send my sorry *** right into a flare just like right now.   Foods can cause me some pain, but usually its never sent me into a flare.  I am like you, same height, same build, very athletic and a gym freak.  Perfectly healthy otherwise, and i haven't flared in 2 years either. 

This is just the way this disease is unfortunately, and i hate to accept that.  I am actually going to talk to my doc tomorrow about surgery as my latest flare hit me so hard out of no where that i was hospitalized out for 7 days(very minor symptoms for a few days, and then passing out).  If i don't get any warning that it will be that severe, well, i just dont have much confidence in myself. 

For me, it has to be an allergic reaction to something during the change in seasons.. such as when people get allergies they get stuffy noses, itchy eyes,etc... i get an inflamed colon!  joy!

Ultimately, because we have an autoimmune disease, there could be lots of reasons for a flare. 

Unfortunately i don't think most of us can pinpoint anything so we either cope with the drugs, or get the surgery. 

I think you have 2 choices, like most of us.  If you flare severely, and its interrupting your life where you are sick all the time... you can choose drugs or surgery. if the drugs work, but the drugs are degrading your life, you are stuck with dealing with it, or get surgery.  If the drugs are acceptable and you can live with it, take the drugs.    If the drugs aren't working, then surgery sounds like the best bet.  At least we are lucky enough there is a cure.  Sure, a bag ain't so pleasant, but at least you won't feel sick and have to worry about getting sick all the time.  Done deal. 

Choices choices.  Rant all you want, i think i just did :). 


Posted 10/9/2008 5:47 AM (GMT 0)
Probably not your diet, however, there are two things that always make my flares worse...Coffee and diet beverages.  Unfortunately Im really addicted to both.  My ultimate favorite is sugar free redbull...but when I drink it I get crazy sick the next morning which led me to cut out caffeine and diet drinks, and I did feel better pretty quickly.  Everyone is different though, but for me any caffeine especially coffee is bad and anything with aspartame and such is bad too. 

Posted 10/9/2008 6:16 AM (GMT 0)
Its hard to be precise when it comes to the variation of this disease as it affects some differently. However, I don't think that your diet is the cause of your flare but some of the food items you listed could contribute.

I read a medical study awhile back that seems to indicate that seasonal or food allergies, stress, infections, or anything that engages the immune response is most likely the cause of UC flares in those who are predisposed to the disease. UC patients appear to lack the ability to switch off the immune response for a period of time.

I believe that the messages to shut off the immune system are produced, but in small quantities. They must build up over time, which I think can be the governor of the severity of flare... unfortunately the damage is done and the body must begin to repair itself. This is just a thought.

I try to limit these stressors as best I can to actively avoid flares and remain in remission as med-free as possible. I take proper precautions when the seasons change, watch my dietary intake carefully, take probiotics religiously, and live as stress free as I can.
Posted 10/9/2008 6:42 AM (GMT 0)

supersaw said...
So what I'm reading is that, the flares is actually worse when autumn comes (like now), and alcohol, and high salt diets don't make it worse?

Theoretically, I can expect to have an entirely pain-free April-August?

That is exactly how it is for me.  I can eat, do whatever i want in those months.  I can drink alcohol, eat buffulo wings, whatever and not have any problems.  Once fall/winter rolls around, I scale back my diet to bland foods, cut raw foods out, cut out alcohol, cut out protein shakes, gassy foods to minimize things as well as can be.   Anytime I'll eat any of that stuff, i'll start cramping, getting some pain, and potentially seeing blood.  However, food hasn't set me into a flare, only made my flares worse, or caused symptoms for a few days that then cleared up.  Usually for me its the onset of an illness like allergies, a cold, the flu, or extreme stress.  

I actually got a nasty virus this summer in July, and that didn't effect me colitis wise whatsoever!

Strange indeed.  For us seasonal folk, there has to be something in the air thats causing an allergic reaction/inflammation in our colons.  I wonder if a change of scenery, or another country would could possibly be an indicator.  I am sure there have been people who have tried that.  I know certain countries have much much lower colitis rates than us.  I also wonder if us seasonal folk all have an allergy to a specific something other other.  Or maybe thats just our bodies response to any illness like most people get stuffy noses, sore throats..we get all that plus colitis.  its hard to say and frustrating because there are no clear cut answers.

 

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