Recovering from a bowel resection and adhesion removal with a 6 inch scar is no small feat. The epidural worked well, but soon we needed to wean that so that I could get on oral pain meds and eventually go home. Also, when you have an epidural you get a catheter as a part of the package. I wanted that gone and even when it was gone, going to the bathroom again was very hard. Talk about stage fright! Thankfully, that worked itself out, phew!

Even better news than getting rid of the catheter was that within 48 hours I was eating solid food. My output was great. Waldo was back. Little did he know we’d decide soon that his name needed to GO.

I was really starting to feel that although this was the biggest surgery yet, it was the answer I needed. Getting all of that bowel that was full of active Crohn’s out of me was the best decision Dr. V could have made. You aren’t always supposed to “feel” the output go to your bag. I had been feeling everything with burning and cramping. Things had never worked right and Waldo never really had a chance.

I was honest with Dr. V and told him I agreed and was happy with how things were going. He too was honest with me. Multiple times over the past two months he told me that my case really threw him for a loop. I was a challenge and he typically is not challenged that much. He has been doing about 50 of these a year for the last 17 years and had hardly ever had to do revisions. He had to do two revisions on me. He told me how humbling this experience this was for him. Dr. V has a pretty stellar academic and professional record. He did his undergrad at NYU, med school at John’s Hopkins, and his fellowship at The Cleveland Clinic. He has been published hundreds of times and from what I hear is one of the best colorectal surgeons out there. Now, don’t get me wrong, I’ve had my frustrations with him. But, for him to admit how humbling my case is and how much of a challenge this was for him speaks for itself. I appreciate his honesty. I also greatly appreciate how he visited me in the hospital nearly every single day and sometimes twice a day. I don’t think a lot of surgeons do that.

When I got to surgery that day I made it very clear do Dr. V that I wanted to just have him pull Waldo back up, put a new rod in and be done. He wanted to do an exploratory laparotomy and I refused. Please, just do this and send me home to recover. I felt like I had had an ok week before and Waldo just needed a fix. He said ok and was hopeful that I would go home that night. Surgery was supposed to be 30-40 minutes so I figured I’d wake up around 5:30-6 pm.

Although I was coming out of anesthesia I do remember waking up and looking at the clock and seeing it was after 8 pm. I also remember hearing Dr. V speak to one of the nurses the words “bowel resection” and “have her call my cell when she is fully awake”.

I was in PAIN. So much pain. Craig was not allowed back in recovery. I asked the nurse to go get my cell phone so that I could call him and find out what happened. I spoke to Craig and he told me that Dr. V was unable to just pull up Waldo. There was too much diseased bowel and too many adhesions. He had to remove a section of bowel with an open incision, clear up a ton of adhesions because my small intestine was attached to my abdominal wall, and create a new stoma. This left me with a vertical scar up the middle of my abdomen that is about 6 inches long. The only good news at the time was that the stoma was at least in the same location.

I did speak with Dr. V that night and he explained more of what happened. He tried to pull Waldo up and he fell apart. He then tried a small incision, but the intestine was so adhered to my abdominal wall he needed to open me up. He took out a very diseased area from my old surgery site of ten years ago and also the diseased area around where Waldo used to be. Instead of a loop ileostomy that I had before he created an end ileostomy. This meant nothing at all can get to my colon. Before, I could have a small amount travel down there, but now my colon would truly be resting. He explained this was his only option. After surgery he had taken Craig in a room with a white board and drew out the whole thing for him. Dr. V was worried I’d be mad at him and I’m sure at the time Craig was too.

I was so overwhelmed and in so much pain, but there wasn’t much I could do about the decision. Thankfully, I had an amazing anesthesiologist who spent the entire night with me and got me to a comfortable spot. This required me to get an epidural where the pharmacist had to mix up three separate concentrations to get it right, but it worked eventually and my pain was controlled. It had been 16+ years since I’d had an epidural and I had forgotten how much they helped.

I never did get to see Craig that night (thanks Covid and the non-believers) which was incredibly hard. I finally ended up in a room at 4 am the next morning. I was on my way to another recovery.

New stoma and very large scar.

There are zero way’s you are going to get through something like this without a little bit of a sense of humor. So, a good friend and I decided that my stoma needed a name. Stoma was starting to shrink a bit which is not uncommon. We decided Waldo was the perfect name because at one point (when the nurse removed the rod) the stoma had disappeared. Well, no longer was this funny anymore because by October 19th Waldo had disappeared again.

One thing I haven’t mentioned in this whole journey is how amazing my at home Ostomy nurse, Kerri, is. I got her name through my sister in law who is also a wound/ostomy trained nurse. She’s not covered by my insurance, but is worth every penny. By this point she had been to my house three times helping me with skin breakdown near my stoma, supply troubleshooting, learning tips and tricks and more.

Kerri came to my house the morning of October 19th. We did our normal routine of me taking off my bag and wafer and immediately she said “you need to call your surgeon”. Waldo had retracted completely under my abdomen again. Soon there would be no way for him to output into my bag and blockages would likely start. I was a mess.

Right after she left I contacted the P.A. and later that afternoon she got in touch with me. She had already spoken to Dr. V and they were going to put a high priority request into the hospital and insurance to get me into surgery ASAP. The worry was that the output would start leaking into my abdomen causing an infection.

I went to bed that night hoping that I would get to be seen in surgery the next day and thankfully I was.

Picture of how Waldo is now under my abdomen.

The following week things were going ok. Pain was better, output was ok, and life went on a little bit. I was starting to walk more and even run some errands and go to appointments by myself.

I did have this annoying (and still do) increase in white blood cells. Initially my GI was worried about an infection and had me on two separate antibiotics for a total of five times a day. However, after two weeks of that and no actual infection symptoms he agreed to stop them. Thank goodness because those were hard on my tummy. He thinks that the continued increase in WBC is due to steroid use, chronic disease, and likely a whole lot of trauma to my body.

The second weekend in October Craig and Ryan went to Baylor to visit Emily. We were all supposed to go for Homecoming, but there was no way I could travel. I was so bummed to miss out. I miss Emily so much and felt just terrible that I had to stay home.

I was scared to stay alone and very emotional when Craig left, but two amazing gals spent the nights with me. I was also able to hang with another friend one of the afternoons. I am so glad for my pups and even more glad that I got through the weekend without any major leaks to my ostomy.

When I look back I realized that perhaps avoiding that particular October 5th surgery day was what needed to happen so that Craig and Ryan were able to go see Emily. I still believe that.

On October 5th I was all set to go in for surgery, but was up all night with excruciating pelvic pain. One positive about this whole 6 weeks so far was how accessible the doctor’s and physician assistants were. Dr. V and Dr. G. both emailed me a lot to check in and it wasn’t uncommon to get phone calls from Dr. G as well. I had the direct phone number to the P.A and that painful morning I texted her and she immediately called me. She instructed me to go to the ER because they could not do surgery on me without ruling out another complication.

Craig and I showed up to the ER mid-morning and thankfully it was an extremely different and much calmer morning than that Friday night in August. It took a few hours and a TON of pain meds, but the pain was finally under control. I had a pelvic ultrasound which didn’t show much of anything. They decided to admit me so I could have a CT scan later that evening. Surgery was canceled.

The pain came back quite a bit and it took a while to get it back under control. I went for a CT that night and again, no real explanation for the pelvic pain. The good news is that the CT, at that day in time, showed that my small intestine was looking much less inflamed and that things were starting to calm down inside me.

I’m not sure what to make of those 48 hours in the hospital, but we never had an explanation for the pelvic pain. It eventually simmered down and I was able to go back to mostly just Tylenol. At that moment, I saw the whole thing as a blessing that we had positive information from the CT. Maybe that ER visit was what I needed to avoid the knife again and that my body just needed more time. I wish that blessing would have lasted longer….

After two weeks at home I went in for my first surgery follow up with Dr. V. It didn’t go well. He was sorry to hear how much I was struggling with discomfort, gas pain, and lack of sleep. He said that one concern of his was that my stoma was possibly placed too high and he wanted to go in and do an exploratory laparotomy.

When deciding on placement for a stoma an ostomy nurse is mostly in charge. They have you sit, bend, twist and move in all sorts of ways so that the stoma is placed in a location that does not have any belly creases. It also needs to be away from old scars. I had a bowel resection 10 years ago so we needed to avoid that scar. Normally they are placed in the lower right quadrant of your belly. Because I have a long torso and also didn’t really want the stoma right at my waist line we chose to place it higher. It sits a few inches to the right and above my belly button.

Dr. V said while successfully done on patients, this placement isn’t normal and wondered if this might be the problem. He would go in the following week and explore. Of course this left me worried, sad, and angry. Mostly worried because I wondered what would happen if he had to close my current stoma up and create a new one after I had already undergone weeks of complications.

I left the appointment and was told I would hear in the next day or so when they could get me scheduled. The plan ended up being that I was to go back into surgery on October 5th.

Just as the few weeks after surgery were a bit of a blur, the first few weeks at home were was well. This is hard.

If any of you have ever been on prednisone you likely will know what I mean when I call it the “Devil’s Drug”. Not only is it hard to be on because it causes insomnia and headaches for me, it’s even worse to come off of. In the hospital I was on the equivalent of 75 mg orally. Surgeons hate steroids because it delays healing. Dr. V tried to drop me to 40 mg before I left the hospital. I was unaware of that rapid drop and within a few hours of that morning dose he was in my room with me basically yelling at him. I was throwing up, in pain, and so shaky. Surgeons also apparently don’t know how important a “taper” is. Thankfully, he and Dr. G work well together and it was agreed to send me home on 60 mg. After a week I dropped to 50 mg and then 40 mg. These 10 mg drops still cause a lot of withdrawal symptoms which on top of everything else is overwhelming and just plain awful.

On top of steroids causing insomnia, the post surgery abdominal pain and gas pains were terrible. Everything I ate was just a struggle moving through my gut. I was popping gas x and peppermint capsules and drinking peppermint tea like crazy. I could not sleep for more than about an hour at a time and could only sleep sitting up. During the night I would pace around my house unsure of what to do to relieve my symptoms. I listened to several books on Audible to pass the time, but was only getting a few hours of sleep a night. This is not good for recovery and definitely not for my emotions. You try so hard to be strong for your family, but it wears you down.

When a person looks down and sees their intestine poking out of their belly it’s not hard to imagine that it would cause fear. How will what I eat break down enough to pop out of the little hole in my small intestine and fill my bag? This is especially scary when you just came off of several days with a bowel obstruction and TPN. Chew. Chew. Chew. You have to chew like a chipmunk. You also have to follow a very low residue diet which includes only soft foods that are easy to digest. You cannot have any raw fruits, veggies, nuts, seeds, etc. Even with a set of rules to follow I was scared to death to put things in my mouth. I lived on smoothies, soups, yogurt, applesauce, and lots of fluids. Also, with no colon being used now to absorb water you have to drink a lot more water than the normal person to stay hydrated. I didn’t have room to lose weight before this surgery and now I looked like an absolute skeleton. Eating every few hours is safer than three big meals a day, but it’s still hard. I never got that hunger feeling so forcing myself most days is all I could do.

Before I move onto the supposed “recovery” phase at home I cannot go any further without talking about my Village.

First, Craig, my absolute rock. There is absolutely no way in the world I could go through what I have been through without him. None of this is fair to him. He didn’t sign up for this, but there has never been one second where I haven’t felt like he has been by my side. He came to the hospital every single morning and would stay until close to dinner time. He held my hand, massaged my sore back and shoulders, held me up when I felt weak, provided his shoulder so I could uncontrollably sob or sometimes just yell. He walked the halls with me when I felt a little stronger and pushed my pole that held all of my IV’s. He took care of everything at home with Ryan and the dogs. He made sure dinner was on the table, that Ryan was up in time and fed for school, went to all of Ryan’s lacrosse games, walked the dogs daily, everything…. I will never be able to thank him enough for everything he did for me and continues to do for me on this journey.

Along with Craig are my two sweet kids Emily and Ryan. While texting, snapping, or chatting with teenagers can be sparse at times, I knew they were always thinking of me and hoping that I could be home soon. It’s hard to be in the hospital during a pandemic so Ryan only was able to come once and Emily is in Texas, but they are my kids and I know how much they love me and hoped that I would feel better soon. I know they were worried and that was really hard on me not being able to see their faces every day.

Next is my friend village and boy is that BIG. I am so lucky to have so many friends from so many parts of my life. From mom’s group friends when the kids were babies, to friends I met when the kids were in elementary, middle, or high school, to soccer friends, neighbors, rec center friends, Craig’s family, and more. Each and every one of them have been there for me. Whether it is a meal from the meal train that was set up, hospital visits, decorations for my hospital room which included unicorns, rainbows, and glitter (you know who you are, this was absolutely necessary to make this hospital stay tolerable!!), walks, talks, texts, visits, games, flowers, cards, hugs, prayers, so many prayers… Countless friends and family have put me on their prayer lists and continue to do so today. Each and every gesture means the world to me and I will forever be indebted to this village of amazing women.

Worth a separate paragraph of “My Village” is the convenience of having a bestie in Australia who is wide awake to chat when you can’t sleep at 3 am in the morning. Mc has been a part of my life since the first year of freshman year at CU in 1993. We might live a world away from each other, but we are just as close as we were 25 years ago. We chatted 3 or 4 times or sent videos to each other during those sleepless nights in the hospital or at home. She’d put her sweet little boys to bed and have time to sit with me for a long, long time and catch up on life. The only hard part is she makes me laugh so much that is really awful when you have abdominal surgery!

Lastly, my sisters, brother, sister in laws, and aunts. All of them are continually praying for me, checking in, and pushing me towards the road to recovery. My two sisters Maureen and Kristin came out on separate visits to help me after that first hospital stay. It meant so much to me and I am so thankful and grateful that they were able to do that. Two of my sister in laws were able to visit me (more could have happened without the visitor rules) and I truly enjoyed and appreciated those visits. My Aunt Mamie started sending me a quote every morning and is still doing that 2+ months later. She and my other Aunt Susan check in with me and it warms my heart.

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.