UC for 23 Years and Counting

Clyde p fullColitis Symptoms I’m dealing with Now:

Basic stomach pain,
Loose Stools.
Lack of ability to gain weight

UC for 23 Years and Counting

My interests:

I love motorcycles.

I am currently 27.

I was diagnosed with UC at the age of 7. Actually had it from 4-5.

I’ve taken every med on the market, been in clinical tests, and as any long time patient knows, NOBODY can tell me anything I haven’t heard or been involved with in the past. From Dr. Linda Lazar at Le Bonheur Childrens Hospital and about 6 GI (specialists) hahaha… all the way thru self medication after learning how my body works. I’ve found over the last 20 years, that Prednisone, Deltasone, or one of the higher order gluccocorticosteroids is the most effective treatment for a flare up.

I’ve found that a routine is key. Waking up everyday at same time, eating at same time, sleeping at same time, etc… has caused my body to weaken my autoimmune response associated with inflammation. This in turn has allowed me to stop ALL meds completely. I was taking, Imuran, Lomotil/Atropine tabs, Prednisone,Tylonel # 4, Asacol, and a few others that I have gladly forgotten! Lol

If you have UC and are intimidated by your Dr., do as I did and tell them to take a picture it’ll last longer!

Also, remember it’s your body, you know how you feel and if it’s working.

No tests in any lab can tell me that it’s helping me when I know better. I had hid the fact I had UC for 15 years due to kids can be cruel. I would say I’m in remission even with the effects I still have today. I’ve spent easily 6-7 months in and out of hospitals over the years. I came within 8 hours of death due to dehydration from UC. Had I not managed to knock phone off hook and call Father, I’d not be here today. I couldn’t talk, walk, barely see, hold down nothing! I’ve been a guinea pig for the pharmaceutical industry for too long, I refuse to take advice of a doctor who has less experience with UC than myself. With roughly 23 years experience, that’s a long shot. Anyway, I’m going to stop ranting about UC and listen to all you beautiful people!

Medications:

Prednisone

written by Clyde P

submitted in the colitis venting area









4 Responses to UC for 23 Years and Counting

  1. HEATHEN HOLIDAY January 6, 2014 at 10:17 am #

    Wow, that is great info. Thanks for sharing that.

  2. Todd huffstetler January 8, 2014 at 3:31 pm #

    I’ve had UC for twenty plus years and it is a day to day fight , one thing i can say is the best i had ever been to the point of what i would call normal is when i went on a diet . I took the atkins diet and went even a little more strict . Within six months i had went from almost 280 pounds to 190 and felt great and was doing great no meds of any kind going were i wanted doing what i wanted . One day after about a year on this diet i fell into to thinking of i’ve been so good i decided to try some diffrent foods at a big party we went to . Fried foods cakes cookies you name it , within an hour of this my wife and kids were pleading with me to go to the ER my temp had shot up to 105 i felt like i was dieing .
    I new what had happen after no whites of any kind or sugar , haven taken all that poison from my diet i had poisoned myself . My intire body hurt eye’s hands feet you name it . No one beleaved me that this was the cause . A few months later i tried it again on my own i tried it again with the same results . Doing a little study on this i found that in third world countries and during time of wars when they came in to help war victims and they gave them food they killed alot of people by giving them food that they could not handle after being without for so long , in fact poisoning them with kindness . Anyway long story short i went into some bad times in my life divorce ect. Started eating wrong again and have gone back up to 260 pounds and UC is back as bad as it ever was and as before meds dont help .

    • HEATHEN HOLIDAY January 9, 2014 at 7:45 am #

      Todd,

      Thanks so much for sharing your story, and I wanted to respond to tell you to not give up because I think you are really on to something. I have also read that Third World countries don’t have the crooked teeth or cavities and dental problems like the Western World. They don’t call the American diet, the, “SAD” DIET for nothing… which means “Standard American Diet.” From what I have read about sugar alone.. it’s sheer poison!!! And it’s in everything, in the forms of other names, too, like corn syrup, etc. I have also read that sugar basically feeds cancer cells.

      One of my GI Dr’s unbelievably told me to get on a diet of “single ingredient only”… absolutely nothing pre-made, canned, processed, etc. and no dairy. This has helped me immensely, but just like you, the minute I start getting too comfortable or confident, I will have a “cheat day” and then I pay for it. There is no cheating if you want consistent good health, but sometimes it’s hard if you are out and about and don’t have food with you. I get that, but that’s why we just have to be on guard 24/7 and have food with us at all times that we can eat. Eating out at swanky, nice restaurants is one of the things I loved to do the most, but now I simply can’t trust what ingredients they put in their foods, no matter how gourmet and trendy and ‘healthy’ the restaurant and chefs are.

      I too, was in remission that happened while I was pregnant. I remained in remission for a couple years until I got a divorce. I had not been drinking any alcohol for 5 years. When we split up, I started drinking again a couple times a week and eating cookies, cupcakes, fast food, anything I wanted. Within 6 months of taking that first drink after 5 years of no alcohol and eating whatever I wanted, I went to the bathroom on Dec. 18, 2009 and BAM!!!! Here came back the colitis in full force, blood and all… I have been battling it EVER SINCE then again and it’s been a nightmare. I have read conflicting reports on people with UC and alcohol… so now I am confused on that subject, as well as black coffee.

      It’s now January of 2014 and I have learned so much about how diet is EVERYTHING to do with our health, absolutely everything, and I can’t tell you how many GI Drs will look you in the eye and tell you with their almighty authority, that “DIET HAS NOTHING TO DO WITH ULCERATIVE COLITIS.” Yeahhhhh….. right….. How stupid do they think we are? When you are sick like us, you spend allll your time reading and researching on how to fix this problem because it literally consumes all of your thoughts and time and energy. It’s like having a constant nagging pain, you can’t concentrate on anything else until you fix it. So, these Drs, in my opinion, are really nothing but legal drug dealers who go to school to try to match a person’s symptoms with the correct drugs. Not that I am against drugs, because pain killers come in handy and steroids have helped bring me out of a bloody flare.. but they should just be used as band-aids while you are on a constant daily battle to make sure you eat correctly and put absolutely NOTHING in your mouth that will trigger anything. Of course there are days when you will eat something totally healthy and have a bad reaction to it sometimes, but you get right back on the horse the next day and start every day fresh.

      Don’t give up Todd, if you did it before, you can do it again. What worked before, will work again, you just have to give it time and patience….. and most of all DISCIPLINE, which I, too still struggle with, so I get it. You’re not alone… thanks to Adam for this site!

      HH

  3. Bryan C
    Bryan C January 8, 2014 at 5:44 pm #

    Whats up Clyde I have had UC or had UC for 15 years I recently had my colon removed. I totally love your comment about not taking advice from a Doc that has less experience with UC then you lol I sware dude I could be a GI Doc better then some of the ones that came and saw me in the hospital when my regular doc couldn’t. Yea I had my colon takin out and was the best thing I ever did I got my jpouch and get my take down in 2 months. Like you I was on every Med out there on the market nothing worked NEVER once went into remission. Today I don’t have to worry about taking any meds at all except some pain meds when I feel crappy stay strong man!

    NO COLON STILL ROLON!

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No matter what, colitis flares don't last forever, don't forget it:)