Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

The Death Sentence

Putting a title on a post before it’s written is like trying to predict the outcome of a game that hasn’t started yet. I prefer to let things play out so the name can reveal itself organically. When I do that, I never feel confined to the parameters of the title and I can go anywhere my imagination takes me.

My first gastroenterologist tried to title my story before it was written, a fairly common practice in the medical field. I might be a realist and a glass half-empty type of gal, but I don’t need my future read by an over-educated, under-experienced physician devoid of bedside manner.

Sometimes—especially the times when you’re sitting on an exam table with your pants off, about to be scoped up your ass by a male doctor who, under different circumstances, might be dating material—sometimes, it’s hard to remember that we have choices, especially when fear is desperately trying to convince us to surrender control to someone more qualified to make the decisions.

I was probably sick with ulcerative colitis for at least a year before I was diagnosed. I didn’t have insurance at the time so I was ignoring symptoms left and right to avoid paying out of my thin pockets. By the time I was admitted to the hospital, I hadn’t slept in weeks due to constant abdominal pain; I was 20 pounds underweight; and my digestive tract was already so clear that drinking two gallons of liquid laxative during the colonoscopy prep didn’t do a damn thing.

To say that night was bad is a gross understatement: It was the worst night of my life. So, when Dr. Kao decided that it was a good time to tell me that I had an incurable form of bowel disease called ulcerative colitis, you can imagine my reaction. The only thing that saved him from getting punched in the face was that I was still heavily sedated from whatever GLORIOUS drugs they had given me during the colonoscopy.

I listened from my hospital bed as he rattled off facts about my body in the most academic and just-deal-with-it-already tone of voice that I’ve ever heard. I would need to be medicated for the rest of my life to prevent flare-ups and I was at increased risk for colon cancer, necessitating regular screenings. As if his inspirational speech wasn’t enough, he finished it off with this statement of hope:

Your life will NEVER be the same.

The sentence made its way through the narcotic fog, into my ears and down my throat straight to my heart where it imploded into a thousand tiny suicidal pieces. I can honestly say it’s the only moment in my life that I have seriously considered killing myself.

Your life will never be the same went round and round in my mind and with each rotation, I heard something different:

Your life will never be worth living again.
Your colon will eventually be removed.
You’re never getting married.
You’ll have to live with a J-Pouch.
You’re never having kids. .
Your ex-boyfriend is madly in love with a new woman already.
You will never be touched again.
You have the most disgusting disease on earth.
You will never be loved again.

If there was ever a time for fear to bully me into silent submission, this was it.

While I was obsessing over the end of my life, Dr. Kao was already well into talking treatment with my mother. I perked up. I already knew my options. Like any good sick person, I had done my due diligence on Google and scared myself silly on self-diagnosis sites. I had already played the UC scenario out and I knew exactly what I was willing to put my body through.

I cut off the doctor and spoke for the first time, “Are you talking about steroids?”

“Yes,” he answered.

“I won’t do it. What are my other options?”

“On a scale of 1 to 10, you’re at about an 8. For someone in your condition, I strongly suggest a round of steroids. It’s relatively—”

“I’ll be fine—I’m young, I don’t drink, I don’t smoke and I know my body can fight this. Is there a milder form of medication you can give me?”

“I can prescribe you a high-powered anti-inflammatory. That’s as mild as it gets.” He paused for a minute, annoyed that I wasn’t taking his recommendation and then continued with a threat, “But if you don’t show improvement in two weeks, we’re going to have no choice but to take more aggressive measures.”

“Fine,” I said, “I’ll be better by then.”

I was told to stay away from pain relievers other than Tylenol, take four Asacol pills four times a day and return in two weeks for a follow-up appointment.

I don’t know if you believe in divine intervention or not but I’m fairly certain that a higher power took over for me that day. I’ve heard that God will do for you what you can’t do for yourself and, sicker than a dog and lying at the foot of despair, there’s no way I could have stood up for myself without supernatural help. I was given a gift of strength and courage.

I believe that being sick does not mean that I have to give up the right to live according to my ethics and values. At the time I was diagnosed, I strongly disagreed with the use of immunosuppressant drugs and was unwilling to subject my body to the ruthless side effects of steroids such as hydrocortisone, prednisone, and Remicade. I had already seen the pain they brought my own mother, who became a guinea pig for all kinds of drugs that “managed” rheumatoid arthritis by suppressing her immune system. She was left virtually defenseless against the common cold and couldn’t hug her own grandchildren for fear of contracting a deadly sniffle or cough. It got to the point where I started crying every time my mother sneezed, because I thought it signaled her death.

I guess you could say that I wasn’t willing to go to any length to fight UC, so I try not to think about what would have happened if my body hadn’t responded to the Asacol—if I had been wrong.

Two weeks later I looked so good that Dr. Kao didn’t recognize me and repeatedly asked my cousin (who lived with me) if I was lying about having no pain and only one or two bowel movements in one day; he could barely fathom that I was the same girl who just 14 days earlier was reporting one or two trips to the bathroom an hour.

That day, I’m pretty sure the Doctor learned a few things that medical school had failed to teach him.

Having a chronic illness is just another kind of long-term relationship—it’s ever changing, always evolving and requires constant work to keep healthy. Just like with people, I have to set boundaries and bottom lines with my disease in order to take care of myself in a way that empowers me to keep going.

I didn’t choose ulcerative colitis, but I can choose how I respond to it. This year, that means the Specific Carbohydrate Diet.

If I had left it up to Dr. Kao, I would have been filed and forgotten under Your Life Will Never Be the Same; but I think somebody more qualified to choose titles should make that decision—somebody like me.

It is true, though, your life will never be the same—because it’s going to be infinitely better.





colitis, diet, SCD

20 Responses to The Death Sentence

  1. Peter NZ December 7, 2010 at 8:30 pm #

    So true,
    If I had blithely followed the doctors word of law I would have been on the bag for 5 years now. However, I think the steriods saved me the first time I was in hospital so I do hope keep them in mind as an emergency measure as they surely aren’t as bad as the bag (they saved my sister too – she actually enjoys them believe it or not! And reckons she’s jealous when I have to take them) Everytime I see the specialist, whether I’m good or bad, he always makes the some comment like “we’ll see about whipping your bowel out”. It just roles of the tongue ever so easily; like he was asking me if I like sugar in my tea.
    Sure I’ve had ups and downs along the way but the downs are getting less and the ups are lasting longer.
    Good luck with it,
    Peter
    P.S. It was more the beard that put me off dating him though

    • Christina December 8, 2010 at 9:47 am #

      Peter-The scary thing is that there are many people who just do whatever their doctor tells them, even if that means whipping their bowel out at the first sign of disease. I feel horrible for people who don’t know they have alternatives.

      P.S. Perhaps the beard was just temporary? Remember, it was just No-Shave November!

  2. Milka December 7, 2010 at 8:34 pm #

    Wow! That is the most descriptive and well written post!!! Thank you!

    • Christina December 8, 2010 at 9:48 am #

      Milka-Hey, thanks for the comment. It is much appreciated.-Christina

    • Christina December 8, 2010 at 9:49 am #

      Milka-Thank you so much for the comment. It is much appreciated. -Christina

  3. Kristin December 7, 2010 at 8:58 pm #

    It’s good to see you here Christina! I love your story, and I love following your year with you! These doctors are amazing. I was told over and over again “no, of course not. Diet has nothing to do with it.” But it’s my DIGESTIVE TRACT!! At least the Specific Carbohydrate Diet makes me feel so much better! :)

    • Christina December 8, 2010 at 9:52 am #

      Kristin-
      Once again, are you available to be my PR rep?
      xoxoxo
      Christina

  4. Linda December 8, 2010 at 7:04 am #

    Hi Christina,
    Your story was so powerful and descriptive, I just had to comment! my son is 6 years old and has had UC since April 2010. although his doctor is not as heartless as your doctor sounds to be, we also got the whole spill of diet has nothing to do with it, and, surgery to remove his colon is inevitable. we have been doing SCD with him for 3 months now, and, although he is not in full remission yet, his condition has improved dramatically, and he finally gets good sleep with no bathroom interuptions. we are getting to the point that his doctor is “pushing” us out the door to go to Shands Hospital for a second opinion because she has given all the medical profession “knows” to tell us to do. my opinion on that is, “Fine with Me! You are not taking my 6 year olds colon out!” good luck to you!! I look forward to more of your stories.

    • Christina December 8, 2010 at 9:58 am #

      Linda-
      Thank you for commenting and I’m so sorry that your son has to endure this battle at only six years old. I can’t imagine facing UC so young…at 27 I was hardly prepared for such a shock. At least you can be encouraged by Elaine Gottschall’s daughter. I think they kept her on SCD for eight years starting at only five years old and she has been in remission ever since.

      I wish you all the best and please feel free to check out my blog, organicallyautoimmune.com, for more writing. The Death Sentence was actually written as a blog post on Day 9 of my SCD journey (I’m now on Day 111).

      Sincerely,
      Christina

      • Linda December 9, 2010 at 6:12 pm #

        I definitely will check out your site Christina. Elaine Gottshall’s daughter’s story was definitely inspiring as my son was the same age as hers when diagnosed. I hope and pray each day that he will have the same outcome. We are going to give the diet a minimum of two years as she suggest so we can avoid surgery and hopefully he can lead a normal life one day. he is such a strong kid. sometimes i think i lean on his strength alone to get us both through. :-) Linda

  5. ciaran December 8, 2010 at 7:33 am #

    Hi Christina, thanks for your brilliantly written story, I pity doctors [trapped in their own expertise!] especially since I was diagnosed earlier this year [no relapse since thank god!] and like everyone with UC was told that its got nothing to do with diet, well I learned quickly that this was not the best advice ever given to me. Met up with a fantastic herbalist/nutritionist who gave me the opportunity to take control of my own food and liquid intake with supplements.

    • Christina December 8, 2010 at 10:02 am #

      Ciaran:
      No, thank YOU for calling my story brilliant ;)

      You know, I respect doctors a lot for what they do for people, but you nailed it on the head: they get trapped in their own expertise. That’s the perfect way to put it. Also, they are only given one class on nutrition in medical school, so unless they are personally motivated to learn about natural/holistic remedies, they probably don’t know more than we do! I’d like to get a herbalist…not sure if they exist in Oklahoma…

      Christina

  6. Christina December 8, 2010 at 10:49 am #

    FYI
    This post and many others like it can be found on my blog ORGANICALLYAUTOIMMUNE.COM so feel free to check it out.

    -Christina

  7. Reid Bryant Kimball December 8, 2010 at 11:55 am #

    I loved every paragraph, word, comma and period of this piece. I cried at the punch line because it’s so true!

    Can I repost this piece on my blog? Feel free to send me an email at info -at- crohnsend.com if you want to talk about this.

  8. Sunworshipper December 8, 2010 at 1:47 pm #

    Wow,

    You are one of the lucky ones to be on the lowest form of remission drug. I’ve tried many things, including the SCD and nothing seems to work for me other than immune-suppressant drugs.

    I, like you, always question my doctor. I make sure I put up a good fight. My first doctor (the one that diagnosed me) had the WORST bed-side manner ever. He literally said to me things like, “the medicine you take will make you ugly. Your boyfriend will leave you because this disease is so horrible.” I would leave his office crying and calling my boyfriend telling him this. He would say that if he were there he would have punched that doctor in the face. Guess what… 10 years later, my boyfriend is still with me. Needless to say, I didn’t stay with that Doctor very long.

    I wish we could ll be as lucky as you, with the medicine you take and the state of remission that you are able to stay in. Unfortunately, at this moment, I need drugs to get me back into shape. I am still SCD, but alas, it did not heal me without medicine. I am now trying the SCD plus medicine. Then, maybe when I’m in remission for a while, I can try the SCD minus medicine once again… though it scares me at the moment, and that’s down the road a bit I’m afraid.

  9. Allyson December 8, 2010 at 4:19 pm #

    This story brought tears to my eyes because the first part of it sounds almost identical to my story. You are very fortunate that Asacol helped you. The first medication recommended to me was Remicade and steroids. I wish you the best of luck with the SCDiet and pray that it works for you. Health and happiness always!!

  10. Terri December 9, 2010 at 12:07 pm #

    Hi there Christina,

    I must say, you write beautifully!

    I wish I can put into words how grateful I am to have found blogs, such as these, which helped to encourage me through this last flare I endured (3 months worth!). I was diagnosed with UC close to 30 years ago….urgh! My mother was diagnosed with Crohn’s (by Dr. Crohn’s associate, Dr. Yarnis many, many moons ago. After enduring many years of prednisone, as well as a multitude of other meds, she ultimately died at the age of 52. So I know you can relate when upon hearing the news of my UC, I too thought of throwing myself out a window (especially after watching what my mother went through!).

    Happily, I’m still here! And even more so, happy to report, just for today, that I am TOTALLY drug free!

    It seemed that weather I was on Lialda(which I was supposed to stay on ’til death did we part!) or not, I would seem to have a flare every 2 years or so.
    As I gave up drugs & alcohol 9 years ago, I truly resented taking any kind of prescribed drugs (ESPECIALLY IF THEY WEREN’T FOR RECREATIONAL PURPOSES!). I do go every 4 years or so for my routine Colonoscopy…and was THRILLED to hear that I was in remission! So what did I hear…CURED! LOL. Funny how the “Queen of D’Nile” ALWAYS gets me in trouble!

    Thus began my intensive “googling” of alternative treatment for UC!
    Thanks to blogs like these & a good friend who wa diagnosed with Rheumatoid Arthritis, I was turned onto the SCD site. Although I don’t adhere to it puuurrrfectly, the results are AMAZING!

    I do however, continue to celebrate with my occasional “Starsmucks” coffee & some cheese a few times a week, but I try my best to stay away from sugars, starches & all processed foods!!

    Just wanted to, again, say thanks for your post!

  11. Brian December 3, 2012 at 5:17 pm #

    I just came across your story through a google search. I was just diagnosed last week with UC. Any updates on this and your condition since 2010?

  12. Chad Allen Rud October 6, 2013 at 7:12 pm #

    Hi, iv been reading the stories and have found them to be uplifting and helpful as I am just starting my journey in life with this. I am a 45 year old man who is scared as hell about this and am beside myself because I like so many others have no clue about this . I need to educate myself to better learn the do’s and don’ts

  13. CaRmen October 14, 2013 at 10:45 pm #

    Hi all,

    My mother suffered from Ulcerative Colitis from the young age of 16… She passed away about 4weeks ago from a upper GI hemorrhage, this was so sudden and unexpected, she had had a flare up about a month before which she was being treated for and she was feeling better, she was 51 when she passed. I saw how my mom suffered off and on all these years with this illness..So i urge people that have UC to get checked when you have symptoms of any kind, dont take this lightly..things happen so sudden… =(

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