The Five Stages of UC

Stage 1- Denial

I was diagnosed: Ulcerative Colitis- pancolitis- all over colitis- not the left side or the right side but everywhere. Finally, a name for the pain, the bleeding, the nausea.  I was diagnosed which meant they could give me drugs, drugs that would solve my problem and relieve my pain. Soon, it would all be over.  I began with mesalamine enemas, but they didn’t reach far enough into my colon to reduce the inflammation. Next, the same anti-inflammatory but in a more comfortable orifice. Then, I was given steroids- a magic drug that stopped the pain, stopped the bleeding and made me nuts. My face grew to be the size of a cantaloupe. I had a double chin and acne. I couldn’t stand to look in the mirror, as the face reflected there bore no resemblance to the woman I knew myself to be.

As I weaned myself off of the steroids, I put my hope in the next drug Colazol, and then the next drug Lialda, and then the next drug Remicade, and then the next drug Humira, and then Imuran. As I progressed through each of these drugs I maintained the belief that the next one would be the one, the answer. When my body reacted to the mouse proteins of Remicade with hyperventilation, I started to really worry. How could a 3-hour infusion not get rid of it? OK, Humira was the answer. A starter pack of 6 shots and then self-injections once every two weeks. Still problems? Increase the dosage to once a week. Still problems? Add in the Imuran at 50 mg a day.

Colonoscopy time

After the scheduled colonoscopy, my doctor asked if I wanted my husband in the room to hear the results. “Of course,” I said.

My husband and our two-year old daughter entered the room. The doctor seemed concerned as he spoke about there being no change in the state of ulceration. “Increase the dosage of Imuran to 100 mg,” he said, “Have you considered the possibility of surgery?”

Stage 2- Anger

Considered? Yes. But, Jesus, I’m 33 years old. I have a young daughter, husband, a rich, full life filled with friends. I love to eat. I love to drink. I love to dance and eat and sing and laugh. I can’t see myself enjoying any of this with a colostomy bag filled with crap hanging off of my belly button.  How could I look at myself? How could my husband be attracted to me. How could I teach? Leave the house? Live? No, not an option.  This is ridiculous! I’ve done nothing wrong. I struggled through my youth and dealt with the dramatics of a dysfunctional household while maintaining an A average. I somehow trudged through my teenage years with low self-esteem. I pulled myself together in my twenties, got myself through college with little assistance. I married a nice guy for love and not money. I became a teacher, no wait, a special education teacher. I work my ass off for my students and do whatever I know to do to help them achieve. I had a daughter who I care for beyond my own needs. I’ve wanted nothing more than to live my life responsibly. I ask for no shortcuts, I ask for no handouts.  I’ve worked hard for everything I have and I don’t have that much. I’ve been grateful; I appreciate the little things.  I don’t get manicures or pedicures. I barely treat myself to the finer things. All I want is to be able to take care of my daughter, to be a good wife, friend and teacher. And it’s me? Me, who gets to deal with this disgusting debilitating disease? I don’t deserve it.  I don’t want it.

Stage 3- Bargaining

Fine. Maybe I’m supposed to learn something from this. Maybe I need to find some strength or insight or compassion. Perhaps it’s discipline. Fine. I’ll try this diet, restrict myself to meats and fruit. Then, maybe I can have my life back? Then, I can begin to live again without the looming threat of surgery? Acupuncture? Before I thought it was just for the granola folks. But, hey it’s worth a shot.  Perhaps, I have been a little selfish, a little vain. Maybe, it’s about being more aware, more compassionate of others pain. I don’t know what its about, but I’ll do what I have to so I can live with this without pain.

Stage 4- Depression

What’s the point of trying to do anything about it?  Nothing’s going to change.  If I have surgery, there could be complications. I could wind up with a bag for the rest of my life. Or, I could have blockages, fistulas and a lifetime of doctors, surgeries and continued anxiety. If I don’t have the surgery, I could eat what I want and get sick all the time. If I go that route there’s no doubt I would eventually need surgery and by that point the inflammations could be so far gone that my body wouldn’t be strong enough to tolerate the internal changes.  I could keep doing SCD and forget enjoying  all of the meals I have come to love. Goodbye, risotto. Goodbye, crusty Italian bread from Sarcone’s with roasted peppers, basil and tomato with balsamic glaze.  Goodbye, hoagies, cheesesteaks, ice cream sundaes. Is life even worth living without these foods? I wouldn’t ever be able to just go out and eat.  None of the options are at all good ones.  Now, I’m going to be the sickly, annoying person who drops out of every fun occasion. I must as well hang it up, throw on some sweatpants and sit on the couch. Leaving the house will just remind me of everything I can’t have, so what’s the point.

Stage 5- Acceptance

No, I’m not there. And if I’m honest with myself, I’m stuck in anger and depression. With some SCD setbacks, I’m having a whole lot of trouble finding my way out of being angry. It seems that no matter what I do, I’m still sick.  I know I need to stick with the program, but I had a relapse. Last night, I thought I could handle a mango.  I cramped up at 3am and spent the next half hour clutching my gut in the bathroom.  In the morning, while trying to get my daughter ready, I was struck with pain again. Nausea and vomiting was soon to follow.  I had to run out of the house to make it to work on time. Being sick left me weak and dehydrated. I got Gatorade and a Power Bar to get some energy back. So, the diet is off for now.  I intend to wallow in misery for a few days.  I’ll revisit acceptance on Sunday. Maybe at church…

-Written by Jen




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9 Responses to The Five Stages of UC

  1. Sylvia March 5, 2011 at 7:21 pm #

    In answer to Jen2, I’m so sorry that you are trying everything and nothing works.
    I know the feeling. I have had Ulcerative Colitis for 33 years, and I have found
    nothing that works as far as medicine. When I have a flare and actually I’m never
    without a continual bout with it, I know if I go to the doctor there will be nothing
    but the drugs offered again. They just cannot do anything beyond that. One of the
    things that has sustained me through the years has been my faith in God, and the fact
    that I have learned so much through the pain and agony of this disease. No, I don’t want
    it, but I do know that I now have much more enpathy for other people with illness. Not
    only that, but I have grown closer to the Lord and read the Bible and pray for others,
    but, yes, I still long to be well all at the same time. There are times I feel like
    throwing in the towel, but that is momentary, and I won’t give up. The things that
    are so baffling about this disease is that I can try what others have naturally, but
    it won’t work for me. Dr. Jordan Rubin was cured by changing his diet and taking
    supplements that he now offers to others at Garden of Life. To all I say hang in there
    and remember this is a hurdle that can be lived with most of the time. Here is a verse
    that gives me great encouragement and I hope to you:
    “We who have run for our very lives to God have every reason to grab the promised hope with both hands and never let go.It’s an unbreakable spiritual lifeline, reaching past all appearances right to the very presence of God.” Hebrews 6:18-19 MSG

    • Jen March 6, 2011 at 9:41 am #

      Sylvia,
      I began going to church 3 years ago when my daughter was born, because I wanted her to grow up with faith and community. I realize that I’ve found it there myself. I know that this illness has made me recognize things with more clarity than I did before. I find such peace in the beauty of everyday things: the morning sky, the wind in the trees, my daughter’s face. I know that none of these things could exist without God- and I truly get that my ability to SEE the beauty in these things could not be without his presence. I thank you for your words and the time you took to write them.
      Jen

  2. TammyBB March 6, 2011 at 5:07 am #

    Hi Jen. Wow. Thank you for sharing your story. I sympathise with you to the bone. Your writing is fluid, open, and beautiful, making one think and really feel. Perhaps you will find some peace in Journaling. I would absolutely also recommend Yoga, Guided Meditation, Positive Visualization, Pilates, Supplements, and the SCD diet. Good luck to you and hang in there.

    • Jen March 6, 2011 at 9:50 am #

      Tammy,
      Thank you kindly. I’ve an appointment on the 12th for acupuncture at a wellness center in my neighborhood. It’s actually an open house, so I can learn about all of the services they provide. Some of those services are just what you suggest. Amazing how chronic illness opens your eyes to things you once dismissed. Thanks again.
      Jen

  3. Tamby October 11, 2012 at 2:10 pm #

    Jen,

    Thank you , Thank you, Thank you…. You have spoken every emotion I have felt since being diagnosed August 2012…. This is awful and describing it to someone who does not have to live with the physical and emotional pain is brutal. I feel so weak when I need a shoulder.. You truly helped me to realize that it is ok to have these feelings.That there truly are stages to facing , fighting and accepting this disease. I have and do feel guilty for having them and feel like someone else has it worse I should be able to suck it up and trudge on… Thank you for being so honest and so insightful. I feel like you have read my mind and seen in my soul what only I have been able to see and feel …. Thank you so much for sharing.. Although it brought me to tears and made me face my own fears it made me stronger as well.
    Forever Grateful,
    Tamby in Southern California

  4. Jolie
    Jolie October 12, 2012 at 1:25 am #

    Ive been 12 years just in phase one .. about time i got me some anger ;)
    Actually I dont knwo what changed but im finally in the “what can I do about this stupid thing” phase..
    Ive joined this site to try figure it out..
    The best thing so far though is hearing other peoples stories – just like yours – and realising that there is someone who gets it and who has endured the hideousness of this disease.

    thank you for posting.
    Jolie

  5. angie June 6, 2014 at 1:49 pm #

    I do believe diet and stress play a big role in getting well. However if u listen to a lot of pastors they preach on people with unforgiveness ending up with stomach problems. I believe there is truth in this. And in the power of forgiveness in getting well. My favourite scripture is Don’t worry About tomorrow for today has enough worries of its own. So take it as each day comes.

  6. Elizabeth O'Rourke February 16, 2015 at 12:14 pm #

    My daughter has a similar story. Have you tried a gluten free diet? Helped her. Prayers for help for you

  7. Alice June 13, 2015 at 2:45 pm #

    Jen,
    I can appreciate your emotions about this disease. I’ve been dealing with UC since I was a teenager and I just recently had a flare (my second where I was prescribed steroids) at the age of 43. I also can appreciate those responses who have found healing and comfort with God. Here is my advice to you:

    – as the doctors will tell you, we will always have this disease. It’s not going away but YOUR goal is to control it.
    – diet, exercise and stress management are important. All three in my opinion are necessary for remission. I let my guard down on my diet because of stress and as a result had my recent flare. I’m kicking myself because I knew better. No, you will not be able to enjoy some foods anymore but if it keeps you from cramping and missing out of the fun it’s worth it right? It doesn’t have to be that your the “sick” person at a party. You can still be the fun person! You just have to stick to your diet and get yourself better.

    Good luck! I hope you can release some of your anger (form of stress) soon. I call this disease a blessing because it’s my body’s way of telling me to slow down, reprioritize and to get healthy!

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