This next blog will sum up the remaining 15 days spent at the hospital.

Initially, I got through the first surgery ok. Fairly quickly my ostomy was producing output (contents appropriately emptying in the bag) and I was sipping drinks and starting to eat a little. I was in a lot of pain, but it was being managed pretty well. My stoma, which I need to define for you, looked pretty healthy. A stoma is an opening in your abdominal wall that a surgeon makes in order for waste to leave your body. Some people, like me, have an ileostomy, which comes from your small intestine. This allows my colon to rest. Everything I eat come out and empties into a bag. It’s consistency is liquidy or ideally like applesauce. Others have a colostomy where contents go all the way through the small intestine, part of the colon and then come out in a bag.

On September 3rd I had my first visit by a Wound/Ostomy nurse at the hospital. I was to have three training sessions on how to empty the bag, change the appliance every few days, etc. When given a loop ileostomy the surgeon pulls up two ends of the small intestine like a loop and puts a rod in to hold it above the abdominal wall. This rod is to stay in a minimum of 3, ideally 5 days after surgery. Well, this nurse decided that my rod should come out on day 1. I don’t know if it was inexperience, being naive, being a complete idiot or what, but she took it out.

Surgeons don’t come around on the weekend. By Sunday things were not good. By Monday when my surgeon came in I was bloated, in pain, and was having very little output. Dr. V could not believe the nurse took out my rod on day 1. While, he was very calm, professional, and wasn’t outright causing blame, my friend who was there could tell he was infuriated. I think he was just not trying to stress me out. He did a bedside procedure where he literally stuck his finger in my ostomy to see if he could unclog it and make things come out. The next day he came back and my ostomy had started to retract under my skin. This was not good. He told me I needed to go back into surgery so he could pull it back up and put a new rod in.

I got through surgery number two and things just went downhill from there. My ostomy was pulled through and looked healthy, but my small intestine completely fell asleep. This is called ileus. It was in shock, inflamed and did not want to function at all. I was bloated, looked 5 months pregnant, and was in excruciating pain. Basically it’s a bowel obstruction that lasted for days. I had to have an NG tube put in, was on only ice chips for 8 days and sometime during that week I was put on TPN. TPN is where you are receiving all of your nutrition through a catheter into your bloodstream. The tip of the catheter is placed in the right atrium of your heart that provides access to the bloodstream.

The days and weeks start blending together at this point, but somewhere around September 13th my small intestine decided to wake up. During this time the NG tube was taken out and re-placed again as well. Thankfully, the constant need for narcotics lessened a bit and I began drinking clear liquids. The first thing I tasted was a lemon Italian ice and it was heavenly! I progressed to full liquids and then soft foods. By September 17th, I was ready to go home. Three weeks to the day. I was scared, but so ready to see Ryan, Frisco, and Blue and hopefully get on my way to recovery.

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TPN bag for my nutrition and round 1 of the NG tube.

Every Tuesday at the Crohn’s and Colitis Center at the University of Colorado Hospital there is an IBD Conference where the GI doctors present their cases and get input from their colleagues which include other GI doctors and surgeons. Dr. G presented my case that day in hopes that possibly someone else had another treatment plan for me. He has been my GI since 2014 and he wanted a new set of eyes on me.

Unfortunately, the overwhelming consensus by several GI’s and surgeons was that my only choice was an Ileostomy. By then the preliminary pathology results had come back and there was no infection. Dr. G sat at the edge of my bed again that night and broke the news to Craig and I. He told us what his colleagues advised, said he agreed, and left us that night on the brink of making such a huge life altering decision. I decided to wait for the surgery consult in the morning before I made my final decision, but realized I had no choice. I was going to be one of those people with “a bag”. NEVER in a million years did I think I would be that person. I have read about people with ileostomy’s or colostomy’s and had always thought to myself that would be the absolute worst thing to deal with if you have Crohn’s or Colitis.

The next morning bright and early Dr. V, my soon to be surgeon, stopped by with his team for a consult. They explained what would happen and before I knew it I agreed and was scheduled for surgery for September 2nd. They also said that I should be out of the hospital and on my way to recovery in just a few days. Boy were they wrong.

After a long weekend in the ER, a real room, and now a room with a glass door/curtain in the transition unit I was still there waiting for relief and answers.

A brief background on my Crohns… I was diagnosed in 2002 and over the past 19 years have had years of flares, years of remissions, multiple initially successful and then failed medications, a bowel resection in 2011, a clinical trial, and many more things I can’t remember. For the first 17+ years my Crohn’s lived only in my small intestine. Then towards the middle of 2020 it went like fire to my colon. We are not sure why that happened. It could be easy to blame the pandemic. I think it has to do with stopping one of my medications that was working for my gut, but was causing an insane amount of squamous cell skin cancers. I had to have several surgeries including 2 on my face and ear. Dr. G and I chose to stop it because enough was enough getting my face cut apart. I’m not sure if that’s the entire answer. Dr. G thinks it’s more than that, but it’s something I think about daily.

Anyhow, back to now Monday evening. Dr. G came by after his day doing procedures. That morning I had a sigmoidoscopy by another GI and Dr. G wanted to discuss those results. They were awful. I had severe ulcerations and inflammation. Much worse than a scope I had only about 6 weeks prior. They did a biopsy and the hope that it was some sort of raging viral infection. The biopsy results would take a day or two, but Dr. G warned is that it was unlikely to be an infection.

He then presented us on the possible next steps. Two of them involved some medications that had some major safety concerns. I didn’t have a lot of time and the clinical trial drug I was on was still in my system. Nobody knew the risks of combining an unapproved drug that my body was still using with other very strong immunosuppressive drugs. The third and even worse option to me at the time was an Ileostomy. Google it if you are unfamiliar, but basically it is creating a hole in my abdomen where they pull out my small intestine, poke a hole in it, and attach a bag where the contents of my small intestine empty into. This gives my colon a rest because nearly nothing will go to it anymore. Wearing a bag means emptying it myself multiple times a day. THIS NEWS WAS DEVASTATING.

He left that night and I immediately broke down in tears. No option was a good one. I felt completely overwhelmed and scared.

The blogs are not allowing me to change the posting date, but this all started August 27th. Actually, it started about a week before when we spent the weekend in Waco dropping Emily off at Baylor. It was a tough weekend. Not only was I dropping my baby off at college which was hard enough as it is, I really was not feeling well. I spent a lot of time in the bathroom on errands and decorating Emily’s apartment. I got through it though and thankfully was able to mostly function.

We got home and the rest of the week I pretty much spent in the bathroom in excruciating pain, in bed, or on the couch. You know I don’t feel well when I turn down my morning latte and walking my sweet pups. Long story short, after some calls with my GI office, by Friday it was time to go to the ER. The hope was to get a few days of IV steroids and be ok.

The ER was like the twilight zone. Not unexpected though on a Friday evening during a pandemic. I spent 21 hours there and finally made it to a real room.

On November 1, 2015 I ran the New York City Marathon. I had overcome a few years of a Crohn’s flare- immunosuppressive, energy soaking, anemia producing, malnutrition giving, disease. I trained through steroid withdrawal (the Devil’s Drug), iron infusions, medication changes, and fatigue. But, I did it. I became strong, fit, and overcame so many obstacles to get to the starting line. I finished in euphoria. It was the most fun race of my life and as I crossed the finish line, I had tears of happiness. I was determined to reach this goal and nothing got in the way of me achieving it.

Six years to the day, a Facebook memory popped up of that race. It brought a lot of emotion to me. Here I am, 12 days out from yet another major surgery and unsure if or when I will run again. But, if you know me well enough, you know that running is one of my passions and now, more than ever, I’m determined to lace up those shoes again. I should also mention that I’m stubborn, impatient, and don’t take no for an answer very easily. I’m pretty sure Craig agrees with this 150%, but at least I’m honest, right?. Running is healing to me. It helps my heart, physically and mentally, helps me clear my head, and gives me a challenge which is healthy for everyone. I will get back to the trails. I’ll find a way. I have to.

The NYC marathon memory prompted my decision to get back to writing a blog. I had been thinking about it after reading some blogs of other people who have gone through what I am going through. There are some positive ones, but a lot of blogs I read are disheartening. So many out there who have given up hope of having their old way of life back or accepting their new life. I have been there many days over the past few months and I will definitely have more of those days. But, I don’t want to be that person. I want to remain encouraged that I will become healthy enough to get back to where I was while putting my Crohn’s to sleep again. Yes, I want to run again and do all the other things I loved to do. But, mostly I want to be the mom, wife, friend, and sister I was before. This disease has taken a lot from my family and I don’t want it to take anymore.

When I ran the NYC Marathon I had a blog under the name of thisgirlsgotguts.com. Unfortunately, that domain is not available anymore so I am now published under thisgirlhasguts.com. Close enough! My guts might have been cut into 3 times over two months, but I still have plenty left to use. “No guts, no story” – Chris Brady

Please join me as I backtrack to August 27th, the starting line of this new unexpected, overwhelming, journey and share my story. You’ll have to read through several blogs so we all can get caught up, but I hope you take the time to do so. Maybe I’ll encourage someone out there who is ready to throw the towel in. There are ups and downs, lots of downs… However, each day is bringing more ups. It’s not easy, probably the hardest time in my life, but journaling, faith, hope, and my amazing village who has been by my side from day one will get me to the finish line, no doubt.