I was so excited to be contacted by U.S. News & World Report again this week. This was for an article about life after having a colectomy. I think they did a great job with this article, explaining more about the surgery and what to expect, but also showing that it’s not something that will inhibit the way you live you life. The subtext says it all: “What can people do once they have an ostomy? Anything they want.” Check out the full article.
I am spending this World IBD Day in the hospital. This was definitely not my plan for this day. But I suppose it’s kind of appropriate since those living with Crohn’s disease and ulcerative colitis never get a break and they can be fine one day and hooked up to a bunch of IVs at the hospital the next. And that’s pretty much what happened to me.
Let me say first of all, though, that I am not in the hospital for a Crohn’s flare. But I am in the hospital as a result of Crohn’s disease and the surgeries I’ve had because of it. I’ve been dealing with some bowel obstruction issues since Sunday and they got even worse last night. When I woke up this morning, I still was having very little output, so out of an abundance of caution, especially considering my pregnancy, I decided to go to the ER. It’s now 11 hours later and I’m still not having a lot of output, or at least not anything substantial.
I really do hate them. And that’s why I don’t have any. There has been more than one occasion where I have dropped 25+ pounds and have looked more like a skeleton than a human being. I have written on here before how when I was 13, I said to my mom, “At least I won’t need a Halloween mask this year.” My hair has fallen out in clumps and grown back unevenly. I have been on steroids that made my face swell up like a chipmunk. My knees and ankles have grown to the size of grapefruit. I have gotten large, bruise-like welts up and down my legs. But I don’t have pictures of any of these things. I would never allow any to be taken.
Looking back now, there are times that I regret that. For one, it’s an important reminder of what I’ve been through. I may never be able to remember exactly what I was like to be at the lowest points in my life, and while it’s not something I would want to dwell on, it is something that is important not to forget. But even more so, I regret not having pictures on days like today… On World IBD Day. Today is a day for raising awareness and tell our stories, but I will never be able to tell the full extent of my story. No one else will ever see the ugliest side of Crohn’s and how deeply it has impacted me. No one may ever be able to understand how sick I was in those most difficult days.
My point is not at all to make anyone feel sorry for me or be a part of the “Who has it the hardest?” game. My point is show that Crohn’s disease and ulcerative colitis are so much more than most people think. It goes so much deeper and hurts so much harder and slowly steals from you so much more than the world around us thinks. And I find that really sad. I find it sad that so many people who have had it even harder than myself, have gone through multiple surgeries and hospitalizations and blood transfusions and poisonous medications, and the rest of world has brushed them aside as dealing with a “stomach-ache.”
In one way or another, Crohn’s disease has affected every single part of my body. It has swelled my joints, deprived my internal organs of blood flow, affected my skin, hair, eyes, mouth and, perhaps more than anything, my mind. It has brought me to depression and anxiety and tension. It has told me I am ugly and weak and disgusting and not good enough. It has tried to take everything from my, and at times, I thought it might succeed.
I consider myself very blessed to be living now without medication and without symptoms, but there are so many others out there who have not made it there. There are others who are dealing with these painful and embarrassing symptoms every single day, as we sit and wait for a cure; as we push for awareness and support to find that cure. These diseases are serious and deserve the respect that a chronic illness necessitates.
This is why I wish that I had not been concerned with how I looked and I had allowed those pictures to be taken… because only in showing the world how low Crohn’s disease and ulcerative colitis can take a person, can we ever hope to bring about understanding. While I hate to see more and more people being diagnosed with inflammatory bowel disease, I long for the day where IBD is known and understood, because with that knowledge and understanding will come the support necessary to find a cure.
Today’s post is actually The Stolen Colon’s very first guest post. This post is written by my good friend Lori. She and I first connected about a year ago online, realizing that we have shared many of the same battles throughout our lives, and soon figured out that we live just a few hours away from each other. We have kept in touch ever since and I had the amazing privilege of finally getting to meet her in person just a few months ago. And I have found that she’s even more amazing that I originally thought. I hope you enjoy getting to meet her, as well. I’ll let her take it from here.
In 2002 at the age of 24, and 9 months after getting married, I was diagnosed with Crohn’s disease. Like most people, I had no clue what this disease could do or what it meant. After 5 years of living with Crohn’s – I knew I was ready to be a mother! At the time, I was taking Remicade and Imuran. Stopping the medication during my pregnancy was not an option. The disease was too severe. In spite of this, I was able to give birth to a very healthy 9-lb baby boy.
Years on steroids and being on several medications had their side effects. I was in constant pain and swelling, and I was losing my hair. I had become very frail. I sustained a couple of painful injuries, including the time when I fell and broke both of my elbows. The continuing complications and the added stress to my quality of life, on top of still experiencing very active Crohn’s, helped me to decide that it was time for a change.
In 2012, I underwent a total proctocolectomy. A week prior to my surgery, I shared the news of my scheduled surgery with my five-year old son. I explained that I would be in the hospital for about a week. He came over to me and reassuringly placed his hands on my very swollen cheeks (from all the Prednisone) and said, “Mommy, the important thing is that you feel better!”
After a 9–hour surgery, and a permanent ileostomy, I was finally able to gain control back in my life. My hair grew back, the swelling from all the steroids subsided, and almost immediately I could tell a huge difference in my pain level. I had hidden my illness for so long, that I forgot what it was like not to make twenty trips to the bathroom in a day or be in so much pain that my husband would have to pick me up off the floor.
My son, who is now six, calls my ostomy bag “my patch” (yes, he might be a little obsessed with pirates!),and loves that we can once again do all the things we love as a family without me being too sick. I was so worried that having an ostomy would negatively impact my life, that I wouldn’t be able to cope with the stigma around it, and that I would never be able to resume all the activities that I loved and missed so much. Little did I know, I wouldn’t have to give up anything. It restored the once lost “quality of life” to me. We can swim, spend hours on the beach, and I never have to worry about my bag or being close to the bathroom. I haven’t even had to change my wardrobe and my bag stays perfectly hidden even under a swimsuit!
One of my greatest fears, losing my colon to this horrible disease and the unknown impacts it would bring to my life, became my reality. My ostomy has not only changed my life and my health, it’s also brought some amazing people into my life. I’ve learned how to love and give back in a whole different way. It’s taught me not to use my disease in a way that hinders my life, but to share it to teach others. My hope is that this experience teaches my son that being different is OK, and that you can lead a beautiful life regardless of the obstacles.