IBD Affects the Entire Person, Not Just the GI Track

Everyone with IBD (inflammatory bowel disease) has a unique story. No two people with these diseases go through the same thing. It just can’t possibly happen. There are people whose illness presents the same way. There are those IBD patients (crohns disease and ulcerative colitis) whose body responds to the same medication. There are even a lot of people who have the same type of surgery (for example, many people with IBD end up having a total colectomy). But, the way our bodies and minds react to the sometimes disastrous things IBD can throw our way is all different depending on the person.

Last September, I became friends with a few girls who were patients in the psychiatric hospital with me. A couple of them brought entire notebooks filled with quotes and since I am a huge quote enthusiast, I copied down a lot of them. The quote that has stuck out in my mind for over a year is

“Have you ever thought that if one thing hadn’t happened, a whole set of things never would have either? Like dominoes in time. A single event kicked off an unstopped series of changes that gained momentum and spun out of control, and just nothing was ever the same. Don’t doubt that a mere second can change your life.”-unknown

The reason I love this quote is because it is the simplest way to describe …just…who I am and how I got here. This quote is the easiest way for me to think about why it is OKAY for me to be where I am today. I clicked with this particular saying while reading it in a psychiatric hospital since I obviously didn’t wake up and decide I needed intense psychiatric help. This situation had been evolving for over a decade until it finally built up enough for me to be in the place I was. In many ways, reading this made me understand myself better. It made me really understand other people better. After hearing this, I started listening to other patients differently when they spoke. I listened with the intent to try and see if I could figure out the deep seeded reasons behind some of the things they were saying and the actions they were partaking in. I have a background in psychology and have always been fascinated by it so analyzing myself and other people was really interesting to me. And now, I think it has given me the tools to truly dig down deep into my own psyche. I have always understood myself and knew where I was coming from and the reasons for some of my actions, but it has only been over the past month or so that I have felt comfortable shedding another layer and looking even deeper.

I have wanted to talk about this topic for a long time but haven’t really been able to formulate it in my head so that I could explain it coherently to others. The way I thought I would try it is to break up the physical facts of my journey with ulcerative colitis with my actual story. As you will clearly see, there is a large contrast between just the physical manifestations of my disease and what my story has become.

Physical (in a nutshell)

…I was diagnosed with ulcerative colitis at the age of 13 and was immediately put on mega doses of steroids. I needed numerous hospitalizations, four blood transfusions, and many medications to try and keep the symptoms at bay. After two years of fighting to keep my disease in check, I ended up having a total colectomy with a J pouch formed in a one step operation. I had complications immediately following that surgery, and life threatening ones later on. After the complications became so severe and no amount of medications, procedures and drains could help my body (that was now filled with infection), I had a second surgery to have an ileostomy. Since that surgery did not relieve me of my symptoms, I decided to have my Jpouch removed and live with a temporary ileostomy. After my 3rd surgery to remove the Jpouch, my rectum, and anus, I recovered slowly. It was then brought to the attention of my doctors that the infection I had was still occupying my entire body. Drastic measures were taken and I was put on heavy duty IV antibiotics at home for six months. Following this treatment, I started improving and was now a 17 year old fairly healthy ostomate.

Now that I briefly went through how my ulcerative colitis manifested itself in me physically, I would like to share a short overview of what my actual journey has been so you can see just how much the emotional component impacts everything; Especially a person’s physical well being.

What Actually Happened (in a nutshell)

-Taking the story above as the obvious beginning of my journey, there is also a lot more I left out since I only shared with you the physical issues that IBD directly caused me. However, the emotional component is overwhelming. Going through severe IBD can also affect other parts of your body as well that take time to heal. That story took place over the course of four years and like I mentioned before, that is only the physical parts of IBD. What I failed to mention was that after being diagnosed with UC, my sleeping was enormously disturbed. My eating and appearance became the sole focus of my life. My whole personality went from being a pretty laid back kid to a giant stress ball. I started fighting so hard so that my disease wouldn’t change my life. Then when I saw it would without question change my life, I then fought even harder to keep it a secret since I realized just how embarrassing the symptoms of IBD were. I then had all of these new things in my life that I needed to manage. Not sleeping, food micro managing, intense pain, instability, coupled with an enormous amount of anxiety, caused me to develop chronic daily migraines. Meaning, EVERY SINGLE DAY since the age of 16, I had a debilitating migraine in addition to all of my other physical challenges. This particular obstacle caused me to start taking pain medications so I could be as “normal” as possible. I was always in agony and I wanted more than anything to be just like everyone else. I saw that I was able to achieve that to some degree if I took pills to alleviate my suffering. Since I got sick at such a young age and did not understand what having a “permanent” ileostomy would mean, I spent two full years fighting having a bag in my mind. I also fought so hard to keep the fact that I had this unusual way of going to the bathroom a secret. My inability to accept life with an ileostomy at such a young age and my courage and strength to follow my instincts and go through with an alternative surgery, led me to have six additional major operations.

As I write this, the guilt in me is heightened. I start to think that if only I had accepted life with a permanent ileostomy years ago that I never would have put myself and my family through all of the additional years of struggle and hardship. However, I am trying to maintain my focus while writing this and not let the enormous amount of guilt in me affect my ability to get my point across. I am actually trying to repeat some parts of that quote I shared with you earlier to let myself know that there were so many factors that were out of my control that contributed to what my family and I have gone through.

Anyway, even though having five kock pouch surgeries ended up leaving me exactly where I was when I was 17 physically, I am a completely different person emotionally. I always said to my parents that if trying this kock pouch surgery ends up failing, at least I would have known I did everything I could to avoid it. I told them it would make it easier for me to accept life with a bag if it came down to that. It did come down to that and I have accepted life with a bag a lot better than before. If it hadn’t been for my new diagnosis that impacted how well the ileostomy was functioning, I would be able to tell you that I have accepted having a bag almost a hundred percent.

My last surgery was at the very end of July 2011, and then two months later, I checked myself into a psychiatric hospital because I had developed PTSD and was suffering enormously emotionally. I was doing very well after both the inpatient and outpatient programs, but then less than a week after I was discharged, I was diagnosed with pyoderma gangrenosum (an autoimmune skin disease that causes ulcers right by the stoma). That completely derailed me since I really believed the surgery in July and living with a bag would give me closure. Knowing I have another chronic illness that could pop up at any point threw me and everything I clung to when giving in to the inevitability of life with an ileostomy. It took a lot of time for me to heal emotionally. It took a number of months for me to realize my need to connect with fellow IBDers. It took more time to open up to someone via the internet about my personal struggles. It then took even more time for me to feel strong enough to meet other people who had crohns disease or ulcerative colitis and be able to actually open up in person. Basically what I am saying is that healing from this most recent obstacle has been a process for me. I do know it is also really the cumulative effect of what I have been through but I am trying to take comfort in the fact that I have been making progress, even though I definitely have a ways to go.

I have shared with you two different “stories.” One, was just the black and white, cut and dry, hard facts of what ulcerative colitis did to me physically. The latter, was an overview of what this illness did to me not only physically, but as a human being just trying to survive impossible challenges that comes from having severe IBD.

A diagnosis of ulcerative colitis way back in June of 2000 changed me. I know I have talked more in detail about the ways in which this illness altered the person I was and the person I know I would have been had I not been thrown this curve ball. However, what I have failed to do was try to at least present to you evidence of the psychological ramifications of living with IBD in a clear way to help you understand the contrast between the physical aspects of my ulcerative colitis, and how all of this impacted me as a person. I am not speaking on behalf of any other IBDer besides myself. Like I mentioned before, no one’s story with crohns disease or ulcerative colitis is ever the same. Just like the disease manifests in everyone differently from a physical standpoint, it also impedes on a person’s life to extremely varying degrees.

We all have a unique story to tell. As I hear more about other people’s experiences, I begin to feel less alone. There is always at least one thing from every story that I can relate and identify with. As someone who has hidden this journey with the world for 12 years, I want you all to know how cathartic it is for me to open up on this blog like I have been for the last month and a half. I want to thank all of you who take the time to read my posts and give me your unconditional support, encouragement and love. You all have helped me start to be more at peace with myself and who I am, which will then pave the way for me to continue on my journey.

Thank you. From the bottom of my heart, thank you.

  • Jodi

    No. Thank you.Thank you for sharing your story, your heart and your strength. I love you Marisa. May every day be a better day than the one before.

  • http://findmein2013.wordpress.com Amanda Brooke

    This made me cry. i love you.

  • jen

    This article was extremely insightful – buy I have to tell you that the last paragraph had the most impact. I’ve suffered w/Crohns disease for 25 years, since I was 15. While my physical and emotional journey has been unique – I, like you, have spent a lot of time and energy hiding my disease, or trusting to let in the wrong people, the people who ultimately, through no real fault of their own, could not handle a close personal relationship w/someone who is chronically ill. Now at the time of my diagnoses, there was no Facebook, no Twitter, and I’ve never been big on support groups. But your post made me resized that today, w/the enormous community of people who deal personally or professionally with IBD. there is NO good reason to isolate myself the way I have been lately. Thanks for the reminder!

    • http://risaroo86.wordpress.com Marisa Lauren

      I’m glad we have all of those forms of social media now to help us!! So many of us live in isolation and Facebook, twitter, etc has brought us all together. It’s so wonderful in that respect :) never isolate yourself . You have a lot of people in the community who care about you :)