Part 7: A J-Pouch For JP

March 3, 2016..a day that will always have a special place in my heart. It never crossed my mind until now, but it’s quite fitting that March 3 is only about a week from my half-birthday because it’s sure going to be treated like one from now on. In the deepest depths of my hardships during the fall of 2014, it was tough to imagine regaining the lifestyle I so much cherished during high school and that freshman year at Penn State. But thanks to my soccer-loving, Argentine surgeon and the amazing team of doctors and nurses at University of Pittsburgh Medical Center, I’ve been granted the second lease on life I so dearly wanted.

As I laid in my transport bed in the holding room, I knew the process too well. A short ride downstairs to the anesthesia-prep room and from there a minute or so journey into the operating room. I’m pretty sure I was still cracking jokes as I slipped off into darkness in the operating room, but that’s just how I learned to handle these situations.  By no means am I saying I need the thrill of a fourth surgery, I was just so excited for what lay on the other side…Life 2.0.

Under the comfort of pain meds, I went to bed very easily the night of the 3rd. I was able to make a more accurate pain assessment the morning of the 4th. I was thrilled about there being fewer incisions because those are what cause the most pain. There was another pain, though, that I had not experienced in the prior two surgeries; the bloating from food travelling all the way through my GI tract. My stomach was inflated like a balloon except imagine the balloon surface being as hard as a brick wall. That made the next few days quite uncomfortable. I was back eating on Friday, the day after surgery, but it was a very slow process with only a few bites at a time. Looking back on your childhood, you think that’s the only time you need potty-trained, but leave it to me to defy those odds haha. The magical moment came early Saturday. Yes, a trip to the bathroom and magical in the same sentence. Months and months of struggle and battle after battle of surgery recovery led to this uncontainable excitement.

It was a short hospital stay as I was discharged Saturday afternoon. There was no looking back as I walked out the exit…being a patient is something I want to take a looooooong break from. The battle continued at home as I was still going to the bathroom 20 or so times a day, but this was totally expected. The body needs time to regain control of muscles that hadn’t been used for 15+ months. By the middle of the following week, I was getting back to normal meal portions as my appetite grew. The sunshine and 70+ degree weather that week surely motivated me to get up and walk, something the doctors stressed I do. With each passing day, mobility came more naturally, eating wasn’t as much of a struggle, and bathroom trips became less frequent.

I think what I’m most blown away about is how I can run around and play sports again without the need to immediately use the bathroom. Before, all those movements and subsequent vibrations ravaged my stomach making physical activity almost impossible. It’s truly what I’m most grateful for because I cringe at the thought of no sports in my life. I did not have the luxury of taking showers every day with the ostomy and my skin rash because of the limit I had on my supplies. Having the freedom to workout and get back in shape whenever I want now is unbelievable. It’s more than likely something along the lines of a half-marathon, Tough Mudder/Spartan Race, or mountain hike lie in my near future. I have managed to accomplish some physical challenges since my diagnosis, but the time I was sick or recovering from surgery over the past four years is time I’m not getting back.

Not having to worry about where the nearest bathroom is anymore is an indescribable feeling. I still need to be smart with the foods I eat. Right now, I’m in a trial and error phase to see how my body reacts to certain foods. All of this will, no doubt, mean I need to eat a healthier diet for the rest of my life, but I see that as a blessing in disguise. I, also, try to avoid eating close to bedtime as I’m still striving for that first full night of sleep in years.

I’m still only 3 weeks out of surgery so my body is still adapting, but the recovery, up to this point, is far exceeding my expectations and I’m just glad to have this life back. As I’m moving back into a life with more answers than questions again, I can’t help but be so grateful for the medical care and personal support I’ve received over the past year and a half.

Now that the wounds and rash are mostly healed…

 

Part 5: Another Surgery, Another Step Closer

As of late July 2015, I have been working at home in Pittsburgh. I was lucky enough to have returned home in time for my local Crohn’s and Colitis chapter’s Take Steps event, which is an awareness walk for those with Irritable Bowel Diseases (IBD’s) where money raised goes toward research. Early in my senior year, I met someone in my college, Zane Geist, who was dealing with Crohn’s disease. It was awesome to know someone battling just like I was and have someone to talk to who would understand the sometimes more unpleasant parts of a conversation about IBD. We put together a fundraising effort for our Take Steps “team” and ended up raising over $300 from members of our college as well as family members.

Hopefully having made it past the worst of this disease, I want to continue being involved with my local chapter and spread awareness about IBD’s. That is the reason I am writing this. I have never really been shy about sharing my experiences, but now I am more ready than ever to voice those experiences in hopes that it reaches someone dealing with the hardships of an IBD so they can see that a little perseverance can go a long way!

When my symptoms went into relapse at the start of my senior year of college, I got down on myself because I didn’t understand how this could be happening to me during what I considered the most important time of my life, a time when I needed to figure out my future with either a job or grad school. Seeing where I am in my life now though, I’ll say in a heartbeat that I was quite stubborn because every day should be treated as importantly as the day before. I honestly consider these surgeries as miracles in my life and am out to take nothing in life for granted. Every day I wake up without pain or hardship, I consider a blessing.

For the first few years, it was quite frustrating when doctors couldn’t give me concrete answers about my symptoms, but you can’t go feeling sorry for yourself. You just have to pick yourself up and try to move forward as best as you can with whatever energy you have that day. Believe me, I’ve been through the lowest of lows, but keeping a positive mindset through it all can open doors that lead to the highest of highs, which I certainly experienced.

It has been a humbling experience so far and I say “so far” because it’s an adventure where I will continue to compile experiences for the rest of my life.

Now to the main point of this post, I completed another successful surgery on December 14, 2015. This surgery was to create a J-pouch, a reservoir formed by folding loops of the small intestine back on themselves (to look like a “J”) and stapling them together where the diameter is now twice the size of the regular intestine itself. The internal walls are then removed to make the actually pouch/reservoir.

My height provided a slight road block as I had just enough intestinal length to make the connection with my anus. Otherwise, in mind-blowing fashion, the surgery was a success. This is just a temporary stage to allow time for the new connections to properly heal before stool flows through them, so I still have an ostomy. The part used for the ostomy is not the end of my small intestine anymore as that’s a part of the J-pouch now. Farther up my small intestine is being used, which means the nutrients and fluids I intake exit my body even quicker than before, so dehydration is a very real problem I face all the time. I am constantly drinking water and Gatorade, even in the middle of the night when I wake up to empty my ostomy. Pedialyte has been a regular component of my diet to make sure I’m always replenishing my electrolytes.

Recovery was about the same for this surgery. One week in the hospital and one at home before I went back to work. Luckily, it was right around the holidays so my first full work week wasn’t until 3 weeks after surgery. I was back playing soccer a month after surgery, which is a testament to my youth, I presume. As much as it sucks I was affected with this disease so early in my life, a positive light that can be shed on the whole situation is that is has surely benefitted me in terms of my speedy recoveries.

My final surgery is scheduled for March 3, 2016, a day I am already counting down the days to, so I plan on making another post around that time.