Ulcerative Colitis Tips


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Colitis Controlled

Introduction:

Diagnosed w/UC 1987 (9th grade)…living with it since. Brief periods of Asacol use to subdue flares…other than that, no meds for 18 yrs.
Rule #1 – NO ALCOHOL

Georges story about “Colitis Controlled”

Nothing brings on a flare up like stress and alcohol. Why do Colitis patients react this way? I have spoken with many in the last 24 yrs. and found a lot of common ground in our upbringing, values and to some degree diets. I have come to believe this illness is a physical manifestation of a mental illness. Coming from an upbringing where I did not feel free to discuss my problems, I bottled them up until my body couldn’t take it anymore. I have encountered a wide scope of personality types in my attempt to determine why I got sick, but found several underlying commonalities. PLEASE COMMENT if you have any thoughts about this. This is a disease of the civilized world with a lot of meat in our diets.

I have yet to meet a vegetarian that has UC.

European upbringing and value system…again these are purely hypothetical observations as I was looking for common ground. I was never allowed to give up or stop trying, unless I was physically unable to do so…did I create my own illness to help me deal with my personal doubts and fear of failure?? I was a skinny, picked on geeky kid that couldn’t talk to a girl to save my life. So I sought to remedy these perceived shortcomings in a few ways. I started playing guitar, it was a great companion during my illness that did not require me to be more than a few feet from a bathroom. Then I tried to “get in shape”, but have been unable to gain any real muscle mass regardless of how hard I tried. So martial arts entered my life, as a kid I used to be involved in judo…so I was into Kickboxing, Ninjutsu, Arnis, Wing Chun…until finally finding the right choice for my rather frail body type…Gracie Jiu Jitsu. Self perception is important for us. Guitar and Brazilian Jiu Jitsu gave me a confidence and strength I never knew I had. I am not cured, but I am mostly in control…which is more than I ever hoped for.

Colitis Medications:

OK, I lied when I said I don’t take any meds. Codeine has been used to treat my pain, then I noticed something…the constipating effect on my bowels was relieving my symptoms and rendering the disease controllable. I was told I would be on anti-inflammatory drugs for the rest of my life, they made me nauseous and degrade muscle tissue!! These drugs are also toxic to your liver and kidneys in the long term. 300 mg/day of Codeine makes me an addict…but it was my choice to use this “lesser of 2 evils” approach. I have no regrets, but I do wonder what shape my body would be in had I taken a more traditional approach.

written by George

submitted in the Colitis Venting Area

 




codeine

15 Responses to Colitis Controlled

  1. dan January 24, 2012 at 5:55 pm #

    Hey George,
    I agree that UC is to some degree a “disease of the civilized world” and diet related, but I’m the (former) vegetarian you never met. I ate zero meat for 10.5 years before coming down with a bad case of UC that landed me in the hospital for 3 weeks. During that time I started the SCD diet (and eating meat) to recover. That was about 2 years ago and though I’m no longer following SCD, I have continued to eat meat in moderation.
    Interesting take on the personality idea, though…your description sounds a little bit like me (I’m usually not so talkative or self-confident).

  2. sc January 25, 2012 at 12:16 pm #

    My daughter was raised vegetarian from birth, ate whole foods, organic, no candy, nothing processed. Diagnosed with UC at an early age. There are MANY vegetarians who have UC. She now does eat meat and does well with it.

  3. Bev January 25, 2012 at 5:15 pm #

    HI…I’d hate to think this is a type A personality disease…but who knows? I am most definitely type A, and a worrier as well! I’ve had UC for almost 15 years, now.

    I was a vegetarian 10 years ago, but not anymore. I was actually diagnosed while still a veggie. I don’t really think this disease has much to do with meat intake. I think there would have been research to that fact, by now.

    Who really knows why a person gets this disease. It is a real pain of a disease, tho. Very hard to live with. It makes me even more of a worrier than I already was! How ironic…

    Cheers, and good health to all.
    bev:)

  4. Jay January 25, 2012 at 5:30 pm #

    I am a big worrier, type A and have always had self doubt as well. I think those all contribute, but I’m convinced the disease is caused by lack of bacteria in the gut and those things just fuel it further. Were you guys all very clean as well? I wash my hands a lot and have always been somewhat of a germophobe…also curious if anyone with UC breastfed as a baby? I’ve heard breastfeeding goes a long way in preventing UC…

    • Peter Rye January 26, 2012 at 6:20 am #

      Hi Jay,

      I have had UC since June 2009 & I was breastfed from when I was born, June 23rd 1951, and was finally weaned on December 3rd 1951, so almost 6 months on breastmilk ! I have always been a worrier throughout my life, and they all say that anxiety & worry is felt in the bowels, thus I have always been at risk of getting UC. I ruptured my Achilles Tendon in October 2008 and had a very stressful time recovering, and just when I was pretty well back on my two feet properly, I got this wretched UC. I also suffer from the skin disease, Psoriasis, which is also Auto-Immune disorder but since being on my medication:
      Mesalazine Pentasa 8x500mg per Day + Azathioprine 4x50mg per Day it has got a whole lot better ! But I suffer from terrible Ulcers on my tongue & side of mouth quite regularly which really gets me down. I cannot find a good remedy for this. It’s all part of UC but so far I have not read of anyone else posting about their Ulcers !

    • George in Napa January 27, 2012 at 6:56 pm #

      Hi Jay
      I have a type B personality but UC snuck up and got me at age 65. Colon problems run in my family but I thought I would escaped the curse because I did not get it until my mid 60’s……..no such luck! I think heredity may have something to do with getting UC…. well at least in my case I think it does. I think that many type A folks might have their UC aggravated because of stress. Maybe stress is what started it in the first place. I think that a good balanced diet can help with our lousy flare ups. My flares are less severe when I am careful what I eat and when I exercise more.

      George in Napa

  5. Maggie January 25, 2012 at 6:37 pm #

    Diet, diet, diet! We have more processed foods available then ever before! Bad stress isn’t good for anything and like many diseases, stress can contribute, but from the time we were born we’ve put foods into our systems our ancestors never had the misfortune to eat, possible our baby bodies were also the product of what our parents ate. Environment has a lot to do with it, too. Eat as much pure food as is possible, not canned food from cans, maybe canned in glass containers, eat grass fed meats, fresh vegies, as much as possible follow the “eat right for your blood type diet.” I’ve been a vegetarian since I was 3 years old because I choked on meat and couldn’t eat it again, I know, pschological. I also ate a lot of wheat, later drank beer, later discovered I was gluten intolerant about 6 years after colitis diagnosis. Hope you figure things out, so many factors!

  6. erica January 26, 2012 at 8:31 am #

    I never took the drugs my GI threw at me and its been a year and a half and I’m doing very well. Emotionally, good days, bad days. I think it’s bacterial, enviromental maybe. We are too clean so to speak. I think we all have to find what works for our own body. I was a huge worry wart growing up…stressed out over nothing. We had a major move across country and months after that I was diagnosed with UC. I began a strict diet from day one….ate garbage before UC. I have sacrificed from day one to eat restrictive,restrictive,restrictive to maintain my health….its worked for me. I still dream of eating a big juicy whopper,though.lol

  7. Swirlibra January 28, 2012 at 4:53 pm #

    I’m trying to find a link with IBD and Vaccines in the developed world since IBD is found largely there. It has to be chemically trigger… And its hard to know every side effect from a vaccine since some may not show up until many years…. And who is to link them? Vaccines and the immune system…

  8. uma January 28, 2012 at 9:02 pm #

    Yes its the stress and my personality. I am a worry wart and principled and hate it when others are not principled like me. And alcohol is definitely a cause i.e wine beer etc. I am a vegetarian from birth and i dont live in the developed world. Having the good bacteria is true as i took several antibiotics while i was young. I have colitis since the last 22yrs and right now i am in remission since the last 2yrs after starting a probiotic.

  9. Chris January 30, 2012 at 10:40 pm #

    Even though my docs have always disagreed, I definately think it´s stress related and if we´re speaking about personality types i think i fit the above description (was a geeky kid, introverted, worrying about everything, etc. now 33, still worry alot, less introverted, more comfortable with myself and i think it helps)

    My final 2 years of college (pre-uni) i started developing symptoms but was too ashamed to complain or check it out. this was 12 yrs ago so there was no real internet resources to check up. My first proper flare up with impossible-to-ignore symptoms was when my vision clouded up due to an iridiocycitis this happened just while i was preparing for my first year architectural midterms. The stress was killing me. the docs soon figured out it was UC and i was on steroids for about 7 years, through uni + when i started work and like clockwork every exam period i´d have a flareup and later every time i had a period of intense work again a flareup. I moved country and started living a much more relaxed lifestyle and for 3 years i didn´t have a single bout of colitis, without changing anything else, not diet (well maybe i did start eating less bread coming to think of it) Nowadays i´m back to working ridiculous hours and the whole drama has started again.

    The docs put me on Humira which seems to work wonderfully but it does open me up to skin infections i never had before. So I dropped the meds as soon as i had it back under control. Sadly it´s back so i´m gonna have to restart the Humira to kickstart the recuperation, cos i have another 2 months of hell at work, but after this it´s gonna be yoga and stress management. It´s the only way i´ll ever control this disease i now realise, even though all my doctors have dismissed my stories of it being stress related and fantasy or just a minor element in the picture.

    Anyone have any stress management tips or stories?

    • rebecca February 13, 2012 at 1:37 pm #

      I agree! At least that’s been true of me! My two colitis flares have directly followed really stressful/anxious periods (i.e. being laid off) for me. Sometimes, I think I should just limit stressors (i.e. certain work opportunities, some social occassions, even stressful conversations) but then think that’s not very adaptive/healthy either because then I’d be living my life driven by avoidance of things I don’t want to avoid! I’ve increasingly been trying to find ways to tamper the impact of all the mental gymnastics I tend to do in stressful circumstances such as sort of thinking/feeling “I have to make sure this goes well” as though it’s the end of the world if it does not.

      I’ve recently been doing a lot of meditation and reading about mindfulness, which has helped me feel calmer & more mindful in stressful situations. I’ve also been looking into finding a therapist in the area of Acceptance and Commitment Therapy to get better at handling stress/anxiety.

      I’ve recently been thinking maybe it’s possible to get oneself so psychologically healthy that you can be really resilient through big life stressors. That’s my goal! I think it’s not stress that’s the problem for me but how I deal with it, which I’m working on.
      good luck to everyone

  10. Rebeka
    Rebeka February 13, 2012 at 9:24 pm #

    Also a worrier here!
    Kind of like George said: As a kid didn’t get to voice my opinion a lot, very supressive environment and so on. My flares so far have all been brought on by stress.
    Currently, I am working with an acupuncturist who has been describing how stress and worry can cause inflammation. I’ve also read about it in ‘Living With Crohn’s and Colitis’: There are two types of systems within the nervous system, parasympathetic and sympathetic, and”…when a person is in pain, under chronic stress, or has a chronic illness, they are ‘sympathetic dominant’, meaning the sympathetic system is the prominent system functioning at most times throughout the day. Continued sympathetic dominance severely inhibits a person’s ability to heal … and leads to chronically elevated inflammation in the body”.
    So just imagine you worry a lot, or grow up in a bad environment; you’re in a fight-or-flight stage, constantly. Now I don’t know if that’s enough to cause IBD, but it certainly is a huge factor. I agree with what rebecca said, stress itself is not the probelm, it’s how we deal with it. The reaction I get from eating something bad (processed) is not as bad as the reaction I get after a really ‘stressful’ day.

  11. JW January 17, 2014 at 6:44 pm #

    I was diagnosed when I was 35. I am now 48. The steroids used to work but don’t anymore. I used to get some relief with Codeine but the docs won’t prescribe it and the last few times I had it for tooth pain it didn’t work anyway. I started taking Enteragam a couple months ago but it costs $350+ and insurance won’t cover it. It only decreased the frequency of morning movements and their urgency. The only thing I haven’t tried are the medications like Remicade and Immuran. I have trouble with skin infections so I have been putting it off.

  12. maryellen July 6, 2016 at 8:34 am #

    I am looking for anyone here who has tried Enteragam and had any success with it for UC. Thanks-

    MaryEllen

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