Adjusting To My New Normal

Adjusting to my new normal as of November 13th, 2019 with my ostomy.

As most of you know I’ve been battling with an autoimmune disease called Ulcerative Colitis for the last 6 years. November 13th I finally escaped my toughest battle. I got my colon removed – all five feet of intestine!! – and had no idea what was in store for me. Not to mention, I completely underestimated how major this surgery truly was going to be.

The first week post surgery.

The day after surgery I was rocking and rolling. I mean, I felt like I was on top of the world and totally crushed the surgery I just had. Then the next day rolls around and I start to feel a little worse. Then the following day comes and I feel worse than the previous day. Come to find out, the first day or two after surgery you can experience something my surgeon called the “honeymoon period.” This period is exactly what it sounds like. After surgery your body acts as if it’s doing much better than it actually is, you have energy, you feel alive, and you think your recovery is going to be easy.

About four days after my surgery I started to feel much worse. I started to develop low-grade fevers, stomach pains, loss of appetite, and I was exhausted. These symptoms led to several CT scans, X-Rays, and blood work to try and determine where the problem was located. Six days after my surgery Dr. Jobst, my incredible surgeon, determined that the cause of my symptoms was due to a blockage. He would be able to relieve the discomfort by putting a red robin catheter in my stoma to help me pass stool. Once he placed the red robin I had instant relief. I was a whole new person, I felt like I could breathe and move around again.

Unfortunately, the next morning all output had stopped again, I was sick, and in extreme pain again. After several attempts to flush the red robin it was clear that I wasn’t able to pass anything through and the fluids were making me more nauseous and ill. Due to not being able to keep anything down, the nurses had to put in a NG tube. An NG tube is a hallow tube that goes in through your nose, past your throat, and goes into your stomach. My NG tube was used to suck fluids out of my stomach to insure that nothing else went into my small intestine to worsen my obstruction. Which, thankfully, resolved my nausea but unfortunately was not able to help with my obstruction.

The second surgery. Thursday, November 21st

Thursday was a rough day. In fact I have mentally blocked out almost that entire day. I had a 103 fever, I was in the worst pain I’ve ever experienced in my life, I could hardly stay awake, and frankly would have rather died than continue to experience this kind of agony. I wasn’t sure how long this was going to last, what was happening to my body, and I wasn’t sure if I was going to be able to pull through. I had no strength to continue to fight, I was helpless.

My family was concerned and worried about me, my nurses were running out of ideas on how to help comfort me (although they never stopped trying), and all we could do was play the waiting game.

I believe I went in for another CT scan and a few more X-Rays that afternoon, which showed that I had an obstruction and several abscess on my intestine. Blood work showed that I was septic. Dr. Jobst performed a second surgery to try and clean up all of the infection and clear out my obstruction. My surgery was late at night and just as long as the first surgery, but it was a very successful surgery.

The next morning

I woke up the next morning to find out just how successful the second surgery was, YAY! Finally, we were moving forward and we could all breathe. The scariest part was finally over, now it’s time to fight my way back to being healthy! Dr. Jobst put in two draining tubes that were connected to the abscess I had on the lower part of my intestine, I was still hooked up to the NG tube, and now I was going to be receiving TPN for my source of nutrients. Which means that I no longer was able to eat and all of my calories were from my IV, which I was on for close to 2 weeks.

I was starting to feel better, my pain was significantly better but I still wasn’t passing any output a few days after surgery. I ended up having to get a scope through my stoma so Dr. Jobst would be able to look inside my intestine and figure out why nothing was passing through. He put in another red robin catheter and found another abscess on the upper left side. The next day I went in to have another drain put in; unfortunately this drain went in between two of my ribs and was very uncomfortable.

The light at the end of the tunnel

The final two weeks I was in the hospital were good. I was improving each day, I was gaining back some strength, I was able to go on longer more frequent walks, and the final few days I was even able to attempt stairs! The final handful of days I was in the hospital I was able to eat food on my own – which was an amazing feeling!

Because I was septic that meant that infectious disease doctors were added to my case. I was on several antibiotics for 14 days, which were given through my PICC Line 3-4 times a day to help rid the infections. There was some question of whether or not I’d have to go home with my PICC still in and have antibiotics at home for a while, but the medical gods were on my side! I was able to go home without any antibiotics and all of my drains had been removed. I was healthy and ready for my recovery at home, 3 weeks in the hospital was enough!

The first week and a half at home was exhausting, sleeping was uncomfortable, adjusting to my bag was a struggle. The adjustment was eye opening, but I was ready for the challenge! Each day I was improving, eating more, and continuing to understand my body better.

Find beauty in everything

Prior to having surgery a lot of people/doctors warned me that I might experience body image issues. I’m a young, beautiful 23 year old who is about to have an ostomy bag attached to her body for the rest of her life. Which might mean no more bikinis, crop tops, skintight tops, insecurities, altered sex life. Oh, and my personal favorite, “How does your fiancé feel about all of this? Is he ready for this adjustment?” (Ha, ha. he’s not even phased by any of this, he’s perfect and sees nothing but grace and beauty in me.)

All of these people were right, I experienced something that was life changing and my body is never going to look the same. So, how did that affect me and my body image?

I am so incredibly happy that I had this surgery, I regret nothing, and I don’t feel sorry for myself at all. I don’t even feel sorry for the fact that I traveled through hell and back in the hospital. I look at myself in the mirror and I see nothing but beauty, happiness, and perfection. My stomach might have a bag attached to it, and yes it might look silly, but I don’t care. I love the way I look, I feel more confident in my skin, and I think this makes me more beautiful. My stoma, who I named Sally, looks like a rose bud and is a very pretty looking stoma – Dr. Jobst did an amazing job – and my scars, although they’re small, tell an important story.

I’m more confident and more beautiful because I’m finally healthy and happy with my body. I’m no longer fighting a battle I was never able to win with my Ulcerative Colitis. I’m no longer running to the bathroom in pain. I’m able to eat foods I wasn’t able to for so long. And, I’m pain free for the first time since high school. My quality of life has improved immensely, and I think that’s the greatest beauty that shines through Sally. A constant reminder that life is precious, our bodies are precious, and all that matters is being healthy and happy; everything else seems pretty minuscule in comparison. Others opinions don’t matter – let’s be real, I rock my ostomy bag ;).

So my body image improved instead of worsened. The story that I have to tell is beautiful and one that I’m proud to share. If my bag shows through the bottom of my shirt or if I’m wearing a bikini and people stare, I won’t be phased or embarrassed. I’ll smile and reflect back on everything I went through and how much greater my life is. Strangers might think something is wrong with me, and honestly, they don’t know any better. But I’ll know that nothing is wrong with me, in fact, I’m finally normal and complete. Sally and I will continue to shine together.

Shoutouts

Bryan Medical Center was home for 3 weeks and I tell you what, I felt like I was part of the family. All of my nurses were phenomenal. I felt like my care was the best I could have ever hoped for. My nurses took the time to get to know me, build relationships, and most importantly, they all listened to me. They went above and beyond to make sure that I was comfortable and taken care of. I can’t thank Bryan and the nursing staff enough for all that they did for me and my family.

Dr. Jobst was the best surgeon I could have asked for. I am truly blessed to have had someone as passionate, considerate, and skilled to have operate on me. He did a beautiful job and cured my Ulcerative Colitis with this surgery. He was thorough, precise, and never missed a beat when it came to communication, procedures, and my care. I can’t thank him enough for everything he did for me.

#FindBeautyInEverything

#StomaStrong, #SallyStrong #Ostomy #Colectomy #Ileostomy #HealthyAndHappy