Ulcerative Colitis Tips


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My Ulcerative Colitis Flare Story

What up fellow UCer’s, been swooping around the site for a couple weeks now and I figure it’s time to introduce myself…

It all started back in 2008 during my freshman year in college as I started noticing blood in my stool pretty frequently. At first I thought it was some infection and didn’t want to make a huge deal about it. Then it didn’t stop. I finally told my girlfriend (now wife) and parents about it and got set up for a doctor’s appt. First doc wrote it off as hemorrhoids and said it would go away in a few months. It didn’t go away so I went back to the same doc and had to plead for a sigmoid procedure which was done the next week. Wowza, what the procedure, being able to see inside yourself is pretty strange! Anyways, after the procedure I was diagnosed with left-sided colitis and prescribed enemas because of the limits of the affected area. I asked the doc about food and she said I could eat whatever I wanted, and I was like “awesome!” So I proceeded to use the enemas and eat a mostly unbalanced, unhealthy diet like any college kid. I would bleed every now and then but there was no pain or cramping so all was good. Ended up getting engaged summer of my freshman year and married in the winter to my awesome wife :). All was going great, we landed an apartment, jobs and proceeded with life until February 2011-

Enter my UC in an all out Bum-Rush:

One Thursday I was working and severe abdominal pain hit me hard and didn’t let up. Got home and was on the toilet every 10 minutes. Couldn’t. Do. Anything. Scheduled a doc (luckily I am still on my parent’s insurance, though the closest place to get coverage is 2 hours away) appt and they gave me pain medicine and shot me up with an antibiotic. Went back in a couple of days to get a referral for a c-scope which I had done later in the month….

My left-sided colitis had progressed into Pancolitis (total colon affected) from September 2008 to February 2011. Nothing was stopping my gnarly flare until the doc prescribed prednisone and colazal. Prednisone slowed the flare down, but the pain and cramping and pooping came back with a vengeance when I quit the prednisone. Now it’s march and I’m currently tapering off my current dose of prednisone which started at 40MG (at 20MG now) and have a appt scheduled to talk about Humira and other options.

I have started the SCD diet (2 days ago) and hope to see results from that because I’m kinda suspicious of those darn pharmaceutical companies who gotta make big bank off of our bleeding bums :(.

Look forward to chatting with everyone and sharing/supporting fellow UC folk
-Curren


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

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6 Responses to My Ulcerative Colitis Flare Story

  1. DavesNinja March 24, 2011 at 8:08 am #

    Curren,
    Thank you for sharing your story. I am currently going through my first flare and although I have not been suffering for as long as you, I totally can relate as far as the bleeding goes. WHEN WILL IT END!?
    Anyway, I got a funny mental image of two guys rejoicing and rolling around in money saying, “Hey, Earl! We got another bleeder!” when you said you were “kinda suspicious of those darn pharmaceutical companies who gotta make big bank off of our bleeding bums.” Yeah, in reality, not all that funny… but if you can’t find the humor in life, it kinda gets depressing…
    Good luck finding the right treatment!

  2. Linda March 24, 2011 at 5:19 pm #

    My whole thing on this is, “Doctor’s Can’t Make Money off of Healthy Patients!” We are currently switching doctors for my son who has UC, and, I am always wondering, will this next doctor really listen to us and try to get my son well, or, send him off for another very expensive procedure that will only last a few months. In the mean time, they will bill my insurance for every office visit which is over $200 each time, when he is in the hospital, the doctor’s bill alone is over $1000 billed for each doctor who comes in and says “Hi! I will be your son’s doctor today for a whole 5 minutes while the nurses take care of every thing else!” I know I sound bitter, but, it kind of gets to you after a while when all you want to do is have an open minded doctor who will believe in diet, believe your child can survive without surgery, and not just treat you like the next ticket #. I wish you all the best who are suffering from UC and Crohn’s and I pray every day that a cure will come along very, very, soon.

    • Adam
      Adam March 24, 2011 at 9:48 pm #

      Hey Linda,
      I hate to get all grumped out and negative on the healthcare system, but I’d be lying if I told you the reason I started this site over a year ago wasn’t because I was absolutely shocked how none of the 6 gastro doctors including 1 from the “Prestigious” Mayo Clinic and 1 from Stanford all said that Diet has “Nothing” to do with the disease…
      I don’t want to get started on this tonight, but I for sure want you to know that I feel your pain and FRUSTRATION at the system. One would think after seeing somtimes thousands of patients per year, that doctors would be open minded to HELPING PATIENTS…
      To you and your son finding the right doc soon,
      Adam

  3. Michelle March 24, 2011 at 8:52 pm #

    Hey Curren-
    Sorry to hear that you are in a flare! I can relate. I was diagnosed in 2005 one month after my daughter was born.

    In June 2010, had an AWFUL flare (hospitalized for 3 wks plus)…anyway, I debated over wheather to do the remicade…and as I debated I got worse, the bleeding got worse. I had to do something (and this was before I found the site). I found that my colon was so bad that I needed something to stop the process so that I could heal. While starting Remicade I started SCD! And lemme tell you it changed my life. I’m not perfect by any means but it really does help. I will say that while flaring it was difficult to do the diet bc of all the yogurt, veggies etc (and there’s only so much soup you can eat in a week), but since my colon has calmed down doing the diet has been really helpful!
    I wish you the best of luck!
    Take care of yourself!
    Michelle

  4. Linda March 25, 2011 at 7:38 am #

    Hey Adam, thank you for the well wishes for my son and I. The health care system really needs a good kick in the bleep! thank you for letting me know about the Mayo Clinic and the 6 Gastro Docs you had to go through to get where you are now. the last visit we had with my son’s GI doc, she was so negative, hopeless, and basically can offer us no other help unless we agree to surgery. We have an upcoming appt. with a doc at Shands which I’m trying to be optimistic about, and I have scheduled an appt. with another GI doc locally after that. I’m thinking ultimately we are going to just rely solely on SCD, and maybe pay out of pocket for a Naturopathic doc who is on the same page as us. Or course, medical insurance doesn’t cover those since there is no money for the pharmaceutical companies to make off of them. We are still trying to get his bleeding and diarrhea under control, but, for the most part, he has done 180 degree turn for the better……all because of following the SCD for over 6 months now! Hey Curren, I hope this gives you a boost of inspiration since you are new to SCD. One more thing, my son’s red blood and white blood cell count have returned to normal, and his platelet count is in normal range now too. I keep a copy of all his labs, and each month they have improved! he is also no longer anemic even though is currently in a minor flare. But, his doctor still wants to do surgery! go figure. thanks again for creating this website Adam. It has been a great stress reliever. :-)

  5. Lauren June 1, 2012 at 1:47 pm #

    As it is always a nice thing to find association with people who can “understand” your reality… I say thanks! My name is Lauren. I’m 20 and I was diagnosed with ulcerative colitis 5 years ago (age 15). My diagnosis was in no way easy. I, also, was told that I was suffering fr hemroids for over a year! Now, not to ridicule the small town knowledge, but I went to my local small town ( lucky to have a hospital and not much else). I continued bleeding, continued living in the bathroom, and continued in pain literally dying slowly. I had uc and experienced a flare for 2 years before ever knowing or receiving help! While attempting to find some kind of life through my struggle and attempting to take a walk one evening, I could literally feel my heart trying to stop beating… I couldn’t breathe, etc. this had been happening and by the same hospital was diagnosed as panic/anxiety attacks. Now, I don’t know what it takes sometimes to prove that you know your body and you know when you are sick… But… I landed in the ER where quite frankly after their procedure they proceeded to tell me…
    “something is wrong with you”
    I’m sure as humans and UC patients you can imagine my reaction.. From there I ended up at a much larger hospital where multiple doctors examined me and to my surprise one finally had some sort of lead as to what might be wrong with me. I went through the test and was diagnosed with UC. I didnt know at that point to be happy for a diagnosis or to be scared, but I’m pretty the fear for my young life took the lead… After my first hospitalization, not my only and there will be more… I was released and went on with my existence. From then, I’ve been to a couple different hospitals and doctors and have currently made some changes in my life and am looking for a new medical center in my new location… I was blessed enough to be in remission for about a year, but however I have it, have recently started experiencing pre- flare symptoms and am trying to hope for the best and prepare for the worst. I do believe in God and I do believe I am one of the chosen ones… I would love any helpful comments. Email me at laurn092@hotmail.com

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