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Steph’s Ulcerative Colitis Story

Background Information:

I am one of those people who took accutane for my cystic acne when I was 17. It worked wonders for the acne, but 3 years later when I was 20, I developed ulcerative colitis(UC). I don’t know if it caused it or not and likely never will. Another interesting thing regarding the onset of my colitis is antibiotic use. 7 or 8 months before I started developing symptoms that would later be diagnosed as UC, I had a very bad staph infection–on my face. I was injected with antibiotics and took them orally. I don’t know if it caused my UC but my poops were never the same after that assault on my system!

My Ulcerative Colitis Story:

So have had UC for 5 years now. Right now I am on tons of prednisone. Thanks to the extra energy afforded by the steroids, I was able to stay up into the wee hours of the morning watching Adam’s awesome videos. I don’t know why I’d never thought to search ‘ulcerative colitis’ on youtube before, but I’m really glad I did.

I started having more and more mucus in my stools. I didn’t think much of it, it just an observation. As soon as I saw a little blood I called my family doctor. He put his finger in my butt and referred me to a GI doc for a colonoscopy. Soon came the excruciating pain, frequent diarrhea, and even more blood. I thought I was going to die waiting to find out what was wrong with me. I kept calling the GI doc and they moved up my appointment. I’m definitely a worry wart. The colonoscopy showed ulcerative proctitis (just the rectum as affected at that time). I was put on rowasa enemas and asacol. That worked great for about 3 months. Next was cortenemas.

I didn’t like the original doctor I’d been referred to so I switched after seeing him for a few years. If anyone is reading this who doesn’t like their doctor, please look for a new one! My old doctor would take forever to return my calls. Anytime I had a little flare he wanted to do a sigmoidoscopy (with me a wake, it got really old). When I was stable I switched to another doctor recommended to me in another UC community on livejournal. I had an appointment with him when I wasn’t flaring just to meet him and get a treatment plan if I should flare. I liked him already. Then he told me he wanted to do blood work. He was appalled my other doctor had never done any blood work. I then fell in love with him (in an appropriate patient/doctor relationship way!). He seemed to proactive about my health. The blood work revealed I was a little anemic and his wonderful nurse taught me how to give myself B12 shots. I forgot to mention I was vegetarian at this time. The B12 shots gave me a lot of energy back.

So over 5 years I have so many UC stories to share, they wouldn’t all fit in here. I’ve been through tons of embarrassing things, things that would have destroyed me before I had UC, and am learning to move on. I went from never pooing in public restrooms, pooing in my own pants publicly, was hospitalized once, to proudly leaving my enemas out in the open for all to see during airport scans (you can have liquids on the plane as long as it’s medicine). I was afraid the airport security was going to take me into a room and use one to prove it was medicine, but it turns out no one messes with you when you when you are waving around something that has a ‘for rectal use only’ sticker.

I’ve never really had a good, long remission. 3 months at most usually. I’ve lost track of how many flares I’ve had. I’m tired of doctors telling me I will probably end up having to have surgery. Adam’s humor and delicious looking meals in his videos have inspired me to try the SCD. This afternoon I made a little smoothie and tonight I’m going to have some chicken soup. Thanks, Adam!

Past and Current Ulcerative Colitis Medication History:

I’ve been on lots of meds. I am still on asacol because if I try to stop or switch to something similar, the flares get worse. I’ve tried 6mp. I’ve tried Some Green Stuff that is illegal in the great state of Missouri where I live(works great for the pain but the idea of getting caught freaks me out too much). The most relief I had was when I started probiotics a year ago and stopped taking 6mp, and started exercising, a lot. I feel like 6mp makes my flares worse. My doctor says the next step is remicade and I’m not ready to go there.

As I mentioned, today I am on prednisone. For the last year for a flare I was doing cortenemas for a week or two and that cleared it up. I fell off my probiotics and exercise wagon and I restarted 6mp last month and I am starting to think having a suppressed immune system allows the flares to gain more power. But I’m not a doctor or a scientist. I wonder if anyone has any similar experiences with 6mp

Steph’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!

4 thoughts on “Steph’s Ulcerative Colitis Story”

  1. I tried 6mp for about a month. It didn’t do anything to help. I did feel excessively tired while on it, and best of all it suppressed my immune system enough to allow shingles to develop.

    that was fun :)

    I’ll never take 6mp again. it’s effect is too generalized on the immune system. It can cause a lot of problems. I’d rather take remicade if it comes to that. It is more hardcore but also more specific in it’s function on the immune system.

    anyways, I’ve been doing the scd diet now for the past 2 months and am slowly getting better all the time.

    hope this helps

  2. Hi Steph,

    I also used Accutane for 5-6 months on 2005 at the age of 21 and I have ulcerative colitis since 2009 august. It started when I was having my military duty(living in Turkey).

    After I had diagnosed, first I started Salofalk enema and things were not bad at all. I was going to bathroom like 2-3 times in a day but there was mucus on my stool. After 2-3 months I started to use Imuran and Steroids (October 2009). Why my army doctor gave me stereoids I really do not know because there was no blood at that time. Since then I cut and started Steroids and Imuran several times. Now, we are thinking that Steroids are enough for me because on the bone densitometer results were not normal. In this period I have also used Salofalk pills and tried syringing the steroids to the enema but they just made me feel better short time.

    You are also saying that you have used tons of steroids. I think it is not working for us who have used Accutane.

    I have also ordered Breaking The Vicious Cycle from amazon and I hope it arrives this week. Because I am really bad now. I go to bathroom like 20 times in a day but no blood. On Tuesday I will see my doctor and I think he will start remicade or advice me the surgery. My dad is a doctor and he doesn’t want me to use remicade :) We’ll see.

    It will be very good if you can share your experince with the SCD Diet. I can also write here.

    See you

    1. Hi G,

      That is scary about your bone test. The amount of steroids I have been on concerns me, it isn’t good for us. The drugs I have tried, steroids included, have been overall unsuccessful at keeping me in remission. I’m trying to avoid the remicade too. It creeps me out.

      As for the SCD, I started about a month ago. So far it has been going GREAT. I could go on and on about how great I feel. I didn’t have instant results but after about three weeks most of my symptoms were cleared up and I’m having fairly regular BMs. I am weening off prednisone with no problems so far (down to 15mg from 30mg). I have a ‘gut feeling’ this diet is going to do the trick. :) Only time will tell, I guess. I had a minor setback of a little mucus yesterday morning, but I think it was due to eating tomatoes. I’ve always been sensitive to them even though they are SCD legal.

      I wish you the best of luck if you decide to try the SCD, I highly recommend it! Definitely check out all the blogs Adam has linked to the right of this page. They have so many recipe ideas to help you from getting bored on the diet.


  3. Hi guys,
    I have been trying to find more people and evidence of UC being caused by Accutane. I took Accutane for 6 months in 2006, and 4 years later I was diagnosed with UC. I have heard of people winning lawsuits against Roche, the company that developed and sells accutane. I am wondering how much proof we can obtain to prove accutane was the cause of our UC..

    Asecol enimas provide relief from symptoms but a month later the symptoms are back. I experience at least some blood in my stool for the past year now, along with gas and diarrhea now and then. Eating a healthy diet (low fibre, no dairy, no fastfood) and eliminating alcohol seems to help. I am reluctant to use other forms of medication, I guess because I am afraid they will cause other side effects and health problems.

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