Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

No Room For UC In The Navy

navy sailor with UC

recent picture of Cody

My name is Cody, and I was diagnosed with ulcerative colitis around the beginning of 2013, after returning home from a deployment in the Arabian Gulf.

Some more about me:

I was born in Bedford, but I spent the majority of my childhood in Hatfield with my dad and my grandparents. My dad and I moved to America around 1994 or so, and we have lived there ever since. After breaking my foot playing football (soccer) I grew interested in ice hockey, but because I was the worst player on the team, they naturally made me the goalie. I’ve gotten a lot better since then, and I’m hoping to play for a college team next year.

I take great pride in being a Sailor in the United States Navy. Unfortunately, because of my UC, this will be the last month that statement is true. I plan on returning to college after they medically retire me, and I hope to return to England some day.

Symptoms:

I have a constant pain in the lower left quadrant of my abdomen, urgency throughout the day, loose stools (with a lot of blood during flare-ups), fatigue, memory loss, and nausea.

No Room For UC In The Navy

Prior to my diagnosis, I had no idea what was wrong with me. I had just joined my squadron onboard CVN-69, and everyone seemed to think I was just experiencing side effects from the required shots. It started with a pain in the lower left quadrant of my abdomen, and a nauseous feeling. I had to use the head many times a day, which is an absolute nightmare when you’re on a ship. After a month or two, my memory was completely useless, I was always tired no matter how much I slept, and I always felt as though I was moving in slow motion. I passed out on a handful of occasions, but the medical staff couldn’t figure out what the problem was.

When we got home, we were given a 2 week leave period, so I went and stayed with my dad. My first night home, I was tinkering with my truck when I felt a sharp pain in my abdomen, enough to force me to take a knee. Once I could stand again, I ran back into the house and went straight into the bathroom. I didn’t realize how sick I was until I saw my jeans and boxers covered in blood. I didn’t know what to think, but I was too embarrassed to tell anyone. I kept convincing myself that my stomach was just acting up because I was getting used to normal food again (food on ships is horrible), and I probably just ate too much for my body to process.

My fiance was the one who finally convinced me to seek medical attention. I spent pretty much all of my free time in the gym while on deployment, and I had reached over 200lbs in the process. I weighed myself around 2 weeks after getting home and I was around 170lbs. After returning to my squadron, I think my lowest weight was 163lbs, and the people around me started asking a lot of questions. While visiting my fiance one weekend, she used the bathroom after me and noticed some blood in the bowl. She asked me about it, and I didn’t know what to say. After arguing for a while, I eventually agreed to see a doctor.

The first doctor I saw was convinced that nothing was wrong, and seemed to think I was just stressing over the next deployment (roughly a month away at the time). A week or two later, my Divisional Officer, Chief, and mentor all agreed that I needed to seek help elsewhere. I was referred to another doctor, and after the initial consultation, I had a colonoscopy and endoscopy, and it was confirmed that I had Ulcerative Colitis.

My initial reaction was fear. They were throwing around a lot of seemingly unpleasant treatment methods, big words I didn’t really understand, and I could overhear a discussion over how much time I would have left in the Navy, all while I was still groggy from the medicine. Eventually my fear turned to anger. I didn’t understand why it had to be me, and I began loathing some of the Sailors around me who had openly admitted that they hated the Navy, and yet they were allowed to stay in. It wasn’t until I was transferred to another department on another base that I finally accepted my fate, and that I had to remain as stress-free as possible in order to get better. While I’m still disappointed, I’m not nearly as angry as I once was.

My family has been fantastic, especially my fiance. She has constantly been there for me, making many personal sacrifices along the way to make sure I’m taken care of. I still hate seeing the doctor, but I no longer find the exams to be THAT weird… Just a bit intrusive at times. After finally discovering what remission feels like a few months ago, I treated myself to some new hockey gear, and I’m now playing goalie multiple times a week. The flare-ups still suck, and I’m still pretty new to this UC thing so I still feel embarrassed from time to time, but I feel better now that I know what’s wrong with me.

TL;DR: UC is a pain in the butt (no pun intended), but I’m not letting it control my life anymore.

If you’ve made it this far and you’re curious about my medications…

After initial diagnosis: 10 pills of Asacol/day, Rowasa enemas once a day
After a few follow-ups: 4 pills of Apriso/day, Rowasa enemas once a day
After a few more follow-ups: 14 pills of Asacol/day, Rowasa enemas twice a day
After even more follow-ups: 4 pills of Apriso/day, 4 pills of Prednisone/day, Rowasa enemas once a day
Current medication: 4 pills of Apriso/day, Rowasa enemas as needed, FINALLY :)

Ask Adam:

“I had to completely change my diet in order to achieve remission, and if I slip up even one day I’ll have a flare-up.. Has your experience been similar at all?”

written by Cody P

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Dear Cody,

Wow man, your posting is bringing back some serious memories of blood droplets on and around the toilet bowl.  I remember wiping those up as best I could with toilet paper at the place I worked for several weeks before finally getting a colonscopy…Must be common for us denial prone creatures.

Your question about slipping up on the diet and near instant effects… In my experience over the past 5 years with the diet changes I’ve made,  one quick moment of weakness or carelessness in a restaurant has not led to a full blown flare up of symptoms.  But most definitely when several days or even weeks in a row of bad eating habits take place…that has led to a full blown flare up.

One thing that seems to be common with other UC’ers is how flare ups somtimes tend to become very extremem (bad gas, lots of bleeding, awful cramping, urgency…) very very quickly.  For example, instead of symptoms going from non-existent to full blown flare in two weeks…sometimes you can go from feeling great without symptoms to a full blown flared out state in just two to three days.  (Not always, but its for sure possible.) And that seems to be somewhat more common as the years go by after a diagnosis.

So…all in all, sticking to what’s working and keeping your symptoms under control is key.  Heck, if that means being the goalie for the hockey team…GO FOR IT.

AND maybe most importantly, big fat hugs from the UC’ers of the world to your fiance for hanging in there with/for you.  That’s more important than just about anything.

Good luck Cody with moving forward,

-Adam




3 Responses to No Room For UC In The Navy

  1. Rosanne
    Rosanne May 16, 2014 at 6:00 am #

    Hey Cody…remember Marc Andre Fleury is one of the Pens Favorite players! Most important position! :) it has been 32 years for me. Good days bad months…always know where closest loo is and you will stress less. Blessings and good health to you.

  2. April May 16, 2014 at 11:11 am #

    Hey Cody, its a very stressful thing not knowing what is the matter with you and what your body is doing. But its much harder facing it alone. Im happy to see you have a fiance to help you and be your partner through this. Its difficult when you are alone. I also am taking Asacol, but 8 pills per day, and i am on shots every 4 weeks of Vedolizumab. I used to take prednisone but i had all the terrible side effects you can think of, and i had to eventually go off totally. I was on Remicade and it was great for a while, but i grew immunities to it, but it worked wonders and only had to have infusions every 6 weeks or so. But find what works for you. Sometimes its just your diet, and writing things down that you see bug you, and stay away from them. I find that doing research is great and helps you get knowledgeable about the disease and that way if something stops working down the road, always give your opinion and tell the doctor what you want to look into medication wise. I always thoguht listening to the doctor was best, but alot of the times, he was giving whatever medication was next on the list. So i educated myself in what was out there and made suggestions, and now im on a medication that works for me and has been great for the past 6 months. And its easy. Just a needle every 4 weeks. Im happy and healthy and thats what is great for me…. But im happy you finally know what is the diagnosis and its knowing that its something that can be controlled is a very good thing. Good luck with all your endeavors and the new life you have planned. Take care.

  3. WILEE July 23, 2014 at 10:46 am #

    Hey Cody,
    As one shipmate to another I empathize with you.
    My UC was discovered at the VA in Houston about 5 years ago.
    To make a long story short, with all the med problems I have had over the past few years, if it was not for the VA we fell that I would be a dead man today. They literally kept me alive and I am still here.
    An old TIN CAN SAILOR, Task force Bravo, Hunter Killer Atlantic Fleet. Early Vietnam

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