Redefining Remission

Over a year ago, I quit my job and threw myself into wrestling my Crohn’s disease into submission. I was firm in my thinking and knew that I could overcome the worst of my symptoms if I tried hard enough. Even though there is no cure for this often-embarrassing autoimmune disease, Crohn’s patients can achieve a state of “remission” where the disease is not active.

I’ve always been a firm believer in “mind over matter”, and I was anxious to get back to my pre-Crohn’s life with the goal of achieving approximately 10-15 years of peaceful digestion.

Yes, my lovely readers, I can hear you laughing now. What is peaceful digestion, you ask? Well, it’s not having to run to the restroom in the middle of a family dinner after you’ve only taken two bites. It’s not waking up in the middle of the night every single night, running to the restroom before you’ve even opened your eyes.

And it’s not having an accident in public or in front of your children, who consider you one of their strongest heroes.

From the moment I first heard a doctor utter the words, “Crohn’s disease,” I wanted it to disappear. And worse, yet, I thought it was possible. I thought that Crohn’s could become a distant memory because of the hope my doctors gave me.

My first gastroenterologist told me I had “mild” Crohn’s and not to worry about it. It wasn’t a “big deal”. Just take some giant horse pills a million times a day. Others told me that I would achieve remission with the right combination of medications. When that didn’t work as planned, I was told I had a moderate-to-severe case and would achieve remission if I had a small bowel resection to remove scar tissue that was causing frequent obstructions and hospitalizations.

After two surgeries and even more obstructions, I was told by an inflammatory bowel disease (IBD) specialist that my disease was in remission and my problem was once again a “plumbing issue”. When the IBD surgeon opened me up a third time, he was forced to remove over two feet of active Crohn’s disease in addition to the high grade stricture they were after, proving that my disease was not in remission after all.

I was told by another GI that I had stricturing disease, which causes rings of scar tissue that block the bowel, and that I shouldn’t worry about fistulas, or abnormal connections where your intestines create a tunnel from your bowel wall directly to another organ, including your skin. I was also told that my disease would be limited to my small bowel, but then developed a perianal abscess which turned out to be a fistula. The fistula repair required yet another painful surgery and I was really unprepared for how long it would take to sit down without wanting to cry.

After seven years of this, I thought I was the one who was doing something wrong. If each doctor was telling me these hard-and-fast rules of Crohn’s disease and my body was defying each and every one of them, then how could I rely on my body–or my doctors–to not betray me at every turn?

I began to doubt myself, stuck in a dark place, wondering if I would ever find this crazy key to “remission”.

One thing you have to understand about me is that I’m always listening and learning, looking for that one right answer and I’m not afraid to ask for it. When I talked to my gastroenterologists, I took mental notes and framed each conversation as a lecture–as an attempt to learn, to excel at Crohn’s disease. Another thing you have to understand about me is that I jump too quickly at answers, and am not as flexible as I should be in my thinking.

When I went on my quest a year ago, I wanted everything to be black and white–I had no time for that cloudy gray in between.

I also had a very hard-and-fast definition of remission and what achieving it meant to me. It meant that not only would my medical tests come back with zero inflammatory markers, but that I would feel relief from most–if not all–of my symptoms. Now I know that my expectations were unreasonable, and that once Crohn’s disease walks into your life, it will always be with you, whether you are going to the bathroom 15 times a day or not.

In other words, Crohn’s disease becomes a physical and emotional part of you, and to fight the very idea of its ever-changing nature only makes it worse.

This realization’s led me to a more important and valuable remission–one I like to call a “remission of the mind”. My disease will always flare and evolve and surprise me, but I’ve learned to move with it and evolve emotionally each step of the way. I will no longer judge myself for not being able to pass a test that has no grades.

Like everyone else, I’ve done nothing to “deserve” Crohn’s disease, and having a complicated case of it is not a failure on my part. I know, now, that I won’t be able to move forward in life without Crohn’s being a part of my daily steps, and I’m okay with that. Life will never be black and white and there are no hard-and-fast answers. I’ve decided to go back to work, and I’m looking forward to creating a new life in the complicated, yet beautiful, shades of cloudy gray.

12 thoughts on “Redefining Remission

  1. Lol. Remission of the mind, so familiar. Our minds do such interesting things to cope/survive. I worked as an RN for 23 yrs, taking time out for TPN, bowel rest, IV antibiotics…but this thinking can be dangerous when taken too far, I guess…my adrenal system broke down from constant stress and ignoring symptoms didn’t make 30+ yrs of Crohns go away. My first surgery was a total collectomy, end ileostomy…advanced disease everywhere with some cancer as a bonus. Second surgery less then a yr later for obstruction/sepsis/peritonitis. And several Hospitalizations since and in between. I was trying to wish it away, but it got me. People can’t understand my moods, my behaviors….I AM Being SELFISH. Hahaha! So sorry. Sorry if my adjustment from deluded patient to awake patient, dog sick, and doing the best that I can to cope with THIS is offensive. And family can be the cruelest. Hard when the strong one takes a hit and doesn’t get up in two or three weeks. Well, now, I guess, it’s MY turn to stop dancing as fast as I can and take care of ME. Some concept! Bottom line, ignoring the ravages of IBD is foolish…take it from a reluctant ostomate, grateful for life and so sorry I worked so hard when I should have taken care of me before I needed to be disemboweled! The lessons we learn….

    • I definitely am not going off my medications or ignoring my disease! I hope that this piece didn’t give you that impression. I will continue to aggressively treat my disease and visit my specialists frequently. But I will no longer put my life on hold, waiting for a “better” that is not coming. And if it does come, it will be a pleasant surprise! ~ Christina

    • It hit a chord when you wrote I should have taken care of myself. I am trying to do that. Can’t say I did it this morning. I did too much and at 5:00 I am in my pajamas now. But taking av”me time” and relaxing. We really needed food and I went to Costco to get things for upcoming events for daughters sporting events. I do feel I got a lot accomplished. But I am literally pooped. Family had nice white chicken chili leftovers. All is good now. Need to still slow down and pace myself better. Thanks for your note cmbrancale

  2. Excellent post today. As I was reading it lying on my side after putting in a suppository to give me some relief this morning I thought I could of written all of this letter. It was my story except I was told my fistulas were all to much a big mess like a tree trunk with many branches and surgery would not be effective for fistulas just make things worse. I also have decided not to go back to work, however going to continue your philosophy. I am reading a book “Living Beyond your Pain…using Acceptance & commitment to ease chronic pain” by Joanne Dahl & Tobias Lundgren. My doctor recommends it and I am only at the beginning at this point.

    . Acceptance and Commitment is our REMISSION of the MIND. Thank you for your post as it gave me pause and reflection as I rest with my crohns complications this morning getting ready to tackle the day.

    PS. Going to a Crohn’s fundraiser today 😀. Have a nice dat Christina and my Crohn’s friends!!!!

    • Thank you for reading and responding, Diane! I am going to have to check out that book. I think it’s great that your doctor recommended it! I hope the fundraiser goes well and that your Crohn’s behaves! ~ Christina

      • Thanks Christina. It was a good fundraiser. I met a nice lady with an osteomyelitis bag. We are scrapbooker’s and there was a special raffle. Don’t know the final amount raised yet, but I have not been on the computer today until now. The Scrapbooking store owner just got diagnosed with colitis and her sister had crohns but sadly died 4 years ago. She was very sick, they tried an intestinal transplant at Cleveland but she was just too ill to recover 😥. Very special lady and family I know.

        On a side note my family and I were watching on demand of the show Unforgettable and there was a PSA about the Crohns CCFA walk. My kids were ecstatic to see it being promoted on a CBS prime time show!!!

  3. I love this blog and I have loved these thought provoking comments. If I ever post in mid sentence, forgive /addisonian exhaustion. So, one returns to work. One leaves work..,we are on our journeys, each battling for control in autoimmune disease land where control is the only thing we know for sure we DON’T have, but we do our best. We all learn and do our best in a scarey world frought with pain and uncertainty…and a lot of anger from time to time. I use my anger differently now, more constructively. I write. And I love to hear the hearts and minds of my fellow IBD warriors, who DO understand and have their own unique perspectives. Where were u when I was 15? Never mind, here we are today. SO grateful for all your words and the feelings behind them. And to Christina, grey is a great color to live in…and my inner fashionista happens to know it’s forecast to be worn with EVERYTHING this autumn /winter : ) wear it happily and enjoy your work, it’s wonderful and YOU are an amazing person. THANK YOU for facilitating! <3. Christina B.

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