You CAN Have a Normal Life with UC

Lately I haven’t been very reliable when it comes to raising awareness and advocacy. My excuse is that it all boils down to one phrase: life happens. Before November 2016 I was always involved and active in the IBD community. I am passionate about supporting others with ulcerative colitis–especially new j-pouchers.

Then my life changed when Baby Ninja came along. Ever since I found out I was pregnant on that fateful day in December 2016, my heart has been divided. Supporting others is still important to me… but now, Baby Ninja takes first place.

World IBD Day 2018

As World IBD Day approaches, I have thought a lot about what I wanted to do to help raise awareness. There are so many ways I could advocate. There are many ways in which I can make a difference on World IBD Day. And believe me, several ideas have been floating around in my head about how to go about it. Sadly, many of those ideas take up too much time… time I need to spend with Baby Ninja and my husband. And then it hit me!

Your Life Isn’t Over Just Because You Have UC

Back when I was in the thick of it I wondered if I would ever have any kind of life again. I wondered if my life was going to be consumed with my disease. I thought I was destined to be miserable for the rest of my life. Many patients who live with ulcerative colitis feel the same way. So I thought, what better way to make a difference on World IBD Day than to share my story? The reason I continue blogging is because I want others to know that there is hope. You can have an actual life after your diagnosis. In this post, I want to give you a brief (or not so brief) rundown of my journey with ulcerative colitis.

January 2011

Dave and me at a friend’s wedding in the middle of January.

Around New Years 2011, I began experiencing diarrhea and blood in the toilet. I chalked it up to a stomach bug and hemorrhoids. But after 2-3 weeks things got worse. I realized something was seriously wrong. In this photo, I was having bouts of diarrhea 15-20 times a day. Many of those BMs produced nothing but pools of dark red blood in the toilet. But as you can see, I look fine. Many patients living with inflammatory bowel disease look normal on the outside. This is why IBD is known as an invisible illness.

February 2011

Me and Dave right after being diagnosed with UC.

By the time February rolled around, I was feeling even worse. Finally, my doctor (who thought I had a bacterial infection) sent me to have a colonoscopy. This was only after realizing how much blood was in my stool. My mother, who lives with Crohn’s Disease, went with me to my colonoscopy.

Me right after my blood transfusion.

After the scope, the GI told me I either have Crohn’s Disease or ulcerative colitis. I couldn’t believe it! A week later, I had my diagnosis officially: ulcerative colitis. That week
I remember being stuck with a needle 9 times. I hate needles. At one point the doctor sent me to have a blood transfusion. And that’s when I had my first IBD-related meltdown.

I walked out of the doctor’s office after scheduling a blood transfusion and got into my car. Immediately, I called my boyfriend screaming, cursing and crying. He took it all like a champ and told me I wouldn’t be alone. He told me he was going to be with me during my blood transfusion. And so he was.

Balsalazide… the biggest pills I’ve ever seen.

October 2011

My wedding day!

By August 2011, I achieved remission for the first time. My boyfriend, Dave, proposed to me and we got married two months later. Not everyone can say they’ve found someone who will stick with them through a serious illness. But Dave did. And I love him more for it.

I was still on Balsalazide and Mesalamine enemas during that time, but I felt pretty ok and didn’t have any major issues… even while traveling to Disney World for our honeymoon! I had coffee and ate several things! It was great. I felt like I was finally getting my life back on track. And I was convinced that it was the “end” of my serious issues with ulcerative colitis. Sadly, I was wrong.

April 2012 – December 2013

Beginning Humira

Around April of 2012, I began my second flareup. I was out of town for work and flwe home. Thankfully, that flareup didn’t last a very long time at all.

Beginning Simponi

Christmas in the hospital

And then, the hardest, longest and most trying flare began in May of 2013. We threw several rounds of Prednisone at it. I tried several diet changes. Then we tried multiple medicinal changes. Things continued getting worse. I wasn’t happy with my doctor. I had several visits to the ER and got admitted to the hospital for the first time during my disease journey. I couldn’t handle it. I felt the joy and life being sucked out of me. I felt myself falling into a depression and my husband did his best to help me keep my sanity. We couldn’t visit our families for Christmas because I was in the hospital and extremely sick. I think it was the first time either of us didn’t see our families. It was a difficult and scary time for both of us.

Moonface from all the Prednisone

March 2014

I was miserable. My negative attitude was beginning to rub off on my husband. He was always my rock, the person I relied on for peace of mind… but even he was beginning to break. One day he told me, “Amber, you can’t let this thing defeat you. You’re stronger than that. It’s really wearing on me. You can’t do this to yourself.” So, I sat down and started drawing. I wanted to express my battle with ulcerative colitis the best way I knew how. I drew the Colitis Ninja. And that’s when I started my blog! I took to Twitter, Facebook and Instagram. I started blogging. I felt a sense of purpose in my life.

April 2014

My belly all marked up for surgery.

Finally, my GI gave up on me. He told me it was time for surgery. At that point I didn’t care. I was sick of feeling like a lab rat and being disappointed in the medicines. I was mad that the diet changes didn’t work. I was ready for my colon to be gone for good. But I knew the cost was going to be huge. All I had to do was get through my sister’s wedding first. And let me tell you, it was tough. I hobbled down the aisle because the Prednisone made walking nearly unbearable. And I had hemorrhoids the size of grapes! I don’t know how I made it through that weekend. But I made sure I was there for my sister during the biggest day in her life.

The Days Leading Up to Surgery

The days leading up to surgery were mostly all a big blur. I remember being in pain and I remember a mega breakdown I had. I was irritable from Prednisone. I was anxious about surgery. I don’t remember what caused it. Dave and I had a huge argument that ended with me on the floor of my closet under blankets wailing and sobbing. I kept saying, “I can’t do this! I’m not strong enough!” Dave assured me I was and that it would all be ok.

Just after surgery.

My battle scars after all the surgeries were over.

A Few Bumps

During the whole process of getting my j-pouch, I did have a few bumps in the road. Including a hospital admission for a fast heart rate. I also had a vicious lemon-sized abscess. And don’t even get me started on the “butt fungus“. My j-pouch has treated me very well overall and I would do it all over again especially knowing what I know now.

Fighting for a Cause

Since I began blogging, I’ve advocated and raised awareness about IBD. I loved every minute of it. Except maybe the traveling. I could do without that. Before my baby got here, I was always on the go and involved in awareness projects. I’ve worked with the Crohn’s and Colitis Foundation, University of Michigan (IBD Division), Janssen, Pfizer, and more recently, NUCA (National Ulcerative Colitis Alliance). I will definitely be providing support in the forseeable future.

Speaking at the University of Michigan.

Right now I’m in a different place in life. I’m not involved with advocacy. I’ve sine realized that’s not my cup of tea anyway. These past two weeks have been hard. My whole family got sick with a really bad cold (and my husband got the dreaded Man Cold). My husband is in a career transition so I’ve been busy trying to help him get through that and support him the best I can. Plus, being the mom to a nearly 9 month old is time-consuming. All this to say, I’ve been busy. But I will never give up blogging and supporting others. I still have plans for future IBD project and blog posts.

In Washington DC with the Crohn’s and Colitis Foundation.

Living Life Now

Right now I’m in a different place in life. I’m not involved with advocacy. I’ve sine realized that’s not my cup of tea anyway. These past two weeks have been hard. My whole family got sick with a really bad cold (and my husband got the dreaded Man Cold). My husband is in a career transition so I’ve been busy trying to help him get through that and support him the best I can. Plus, being the mom to a nearly 9 month old is time-consuming. All this to say, I’ve been busy. But I will never give up blogging and supporting others. I still have plans for future IBD project and blog posts.

My two sick loves.

Life After J-Pouch

In conclusion, I want to let all of you know that life after diagnosis and j-pouch surgery is possible. And I’m here telling you about it to give you hope. You can have a baby. You can find love. You can have a normal life. Relatively speaking, anyway. Surgery is far from being a cure for UC. But it has greatly improved my life. 94-95% of all j-pouch patients report to having a better quality of life. As opposed to when they had a bleeding, ulcerating colon. So on this World IBD Day 2018, I hope that sharing my story will give you hope. I know my experience isn’t everyone’s experience. My experience isn’t an isolated one either. My blogging will be spotty and unpredictable for a while, but that’s only because I have so much going on right now. I keep saying this, but I can’t stress it enough. Colitis Ninja isn’t going anywhere. If you have any questions or concerns, please know you can always email me. I love hearing from others and helping them when I’m able.