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Remicade May Have Been Working, But…

Introduction:

My name is Nick and i am 25 years old. I was diagnosed with UC August of 2010. I have been on countless different meds until i landed on Remicade August 2011.

Some more about me:

I consider myself to be fairly active. I play Disc Golf often and I love it. I walk around downtown with my fiancee checking out new places to eat. I love food! I enjoy going on hikes and trails. I Bowl and just started Snow Boarding this year. I write hip hop songs with my buddy haha and write stories on occasion..

Symptoms:

Currently i have mucous in the stool, gas, bleeding, and urgency. a mix of watery stool and normally formed stool right now so its hard to say which.

My Story:

I have had ulcerative colitis for over 2 and a half years. it came on very sudden and i was scared sh!tless(ha!) when I saw blood and that it would not stop, only getting worse until I went to the Quick Care medical down the road. My PCP did not have a clue and said I may have IBS. I thought to myself there is no way, as I know people with IBS and it is not this bad. He gave me a few prescriptions for IBS symptoms and none of it worked. I was then referred to my Gastroenterologist.

I got a Colonoscopy shortly after and was then diagnosed with UC. At first he called it Mild to Moderate, and then decided it was Moderate to Severe. I was put on Prednisone and Balzalicide and I was feeling great again! This lasted for about 5 months and then I started having bad symptoms again. I was again prescribed many different meds, none of which worked, and I was put on Prednisone again. When I was weened off the Prednisone, the bleeding came back and i was put right back on it. I suffered for about 4 or 5 months and just dealt with the pain and tried to live my life as it was summer. I would still go Disc golfing and go out, I had a hard labor job in the Meat Department with horrible hours such as 11:30am- 9pm one day, then the next would be 4:30am-1pm the next, and i would go without a day off for sometimes 8 days or more. Not impossible hours, but for someone with a long flare up in Ulcerative Colitis it was not helping.
August 2011 I was finally put on Remicade and that has been all i have been on from then til now, with only a few hiccups along the way. Before i started Remicade I had lost 20 pounds in about 5 months, and i was skinny to begin with. after being on remicade for a few months i gained my weight back! I recently let the medicine get out of my system 3 weeks ago and I seem to be in the begining stages of a flare up. You might call my “begining stages” already an intense flare up with the blood, diareah, gas, painful cramps, etc. I only call it begining stages because i know it can still get worse. when i was first diagnosed i think i went to the bathroom 22 times that day? Brutal.

Anyways, the reason I got off the Remicade, stupid as it may seem, was to find a natural cure that I keep hearing about. Remicade may have been working, but I know its only a matter of time until it doesn’t. And then what? I am one of the healthiest eaters that I know. I am gluten free, beef free, coffee free and now alcohol free. When I was first diagnosed and initially felt better, I was happy to be ‘normal’ again and I ate whatever I wanted. After 1 or 2 relapses I smarted up and I eat 1 or 2 veggies a night, all natural chicken breast or all natural pork, or wild caught fish for the protein. I also have a Macro Greens smoothie every morning which is equal to 5 servings of Raw fruit and veggie nutrition.

So here I start my journey full-force for a natural help, free of meds and all the BS that comes with it. I know how bad it can get and I will not let myself get too sick before I seek help. but I have hope and am determined.

I current take a multivitamin, Macro Greens smoothie each morning, eat zero processed foods, buy organic most of the time, take aloe vera juice, L-Glutamine Powder(though i need to upgrade to fermented), and a probiotic(that i also need to upgrade to the good stuff).
Nice to meet you all, this website is great!

Medications:

To be honest I cannot remember every medication they put me on as i got switched around quite a bit, multiple times. I was on Balzalicide for about 9 months, few other things that did not work…i was put on prednisone at least 3 times for a 2 month ween each time.

Finally i was put on Remicade and that actually worked for the most part. i started Remicade in August 2011 and stayed on it up until about i let the medicine get out of my system 3 weeks ago.

written by Nick L

submitted in the colitis venting area




5 Responses to Remicade May Have Been Working, But…

  1. Don
    Don May 22, 2013 at 9:31 am #

    Hi Nick. That’s quite a story and mine is very similar. Going to the bathroom 20 times a day is exhausting and the sleep deprivation also makes it torturous. I was given the opportunity to go on Remicaide and refused. I don’t know why exactly but I just felt that suppressing my immune system was a bad idea. I chose to go on the SCD diet instead. Have you heard of that? Here is a link to Elaine Gottschalls’ website. This diet has kept me in remission for years and it really worked wonders for me. Take care of yourself and good luck!
    Don
    http://www.breakingtheviciouscycle.info/

  2. bev May 22, 2013 at 2:03 pm #

    Hi Nick,

    You mentioned upgrading to a better probiotic…what are you on now?

    I am in remission on a good probiotic and fermented L-glutamine.

    The probiotic I take is ULTIMATE FLORA CRITICAL CARE by RENEW LIFE. It is imperative that you take a probiotic on a completely empty stomach with water, and then try not to eat for at least a half an hour. I take it at 6am, when I get up, and then I don’t eat until after I exercise, about two hours later. If mornings don’t work, you can take it a bedtime, providing you have eaten nothing for two hours prior. Or. you can always get up at 3 or 4am, take it with water, and go back to bed. This probiotic is also enteric coated so it does not dissolve UNTIL it reaches the colon. A lot of probiotics dissolve in the stomach, making them less effective.

    About 11am, again on an empty stomach, I take the unflavored fermented L-glutamine. It is by NORTH COAST NATURALS, and is in powder form. You can take from one (5g) to 8 (40g) scoops per day. I only take one now, but I have taken up to three scoops per day, over the past year, if any UC symptoms started to crop up. They never seem to anymore!

    Even over a year later, I continue to improve. For example, for about the first six to seven months on these two wonderful things, by BMS were still loose. Not any more! They are firm and normal these days. It can take a long time to see 100% results, but I truly feel 100% now! I’m so glad I stuck with it. I think people bail out too soon. and don’t give the natural things a fair chance to work.

    Cheers,
    Bev
    :)

  3. Wendy
    Wendy May 22, 2013 at 10:07 pm #

    I think natural’s great, and it is what I try to do, but if you must have the drugs, I think take them. I hope you can find a good way to get it under control without drugs though. I think those drugs cause as many issues as they cure, and I think we don’t yet know all the issues involved with taking them. If you’re going to lose your colon though, and you don’t want to, drugs may be better. Good luck with everything. Flares are really depressing for me and can really get me down, but I have gotten better and this time I am trying to get better naturally for a while to see if I can make it work. I have to be more strict though with my diet. I LOVE food and all kinds.

  4. Erin May 27, 2013 at 5:01 am #

    Be careful about stopping the Remicade. You may not be able to go back to it because your body can build up a resistance to it and may reject it if you need it again. That’s what happened to me, now my options are limited.

  5. Teanna
    Teanna May 28, 2013 at 1:38 pm #

    Hey Nick, just wanted to throw out some advice on the aloe vera juice you’re taking. A lot of brands contain “anthraquinone” which is a laxative and can cause diarrhea. I use a brand called George’s Always Active Roadrunner Aloe Vera Juice, because this ingredient has been removed. It tastes just like water, and I LOVE it. I absolutely give it credit for stopping my severe intestinal bleeding without meds. So definitely keep taking it, just make sure it’s a brand that won’t cause you anymore diarrhea than you already have!!
    Good luck, I hope you get better soon!

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