I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.
However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.
These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.
How could I possibly be laughing? I had just been wheeled into the sterile operating room, had scooted over onto the operating table and was now gazing at the big round lights looming above with doctors and nurses in masks poised over me. Wouldn’t anxiousness have been a more appropriate reaction to this scenario than this sudden case of the giggles? And no, it wasn’t medication or nervousness causing me to crack up; it was Dr. Brown’s sense of humor. The room was freezing and he had just said something hilarious about this being my third surgery and how it was supposed to earn me a free cup of soup. Dr. Brown could always tell the funniest story or joke at exactly the perfect time to make me smile and erase my worries for at least a few minutes. And when you are feeling awful and terrified, even small moments of laughter are a big deal.
Dr. Brown’s sense of humor was just one of the many things that made him the best doctor I have ever had. Anyone with a medical worry can relate to the unbelievable sense of relief that comes with simply hearing your doctor’s voice on the phone advising you on what to do next when you are anxious about something. Dr. Brown was always there to help me out with concerns and is the most accessible doctor I have ever worked with. When I had problems, I didn’t talk to his nurse– I talked to him. He called often to check in both at the hospital and when I was back at home… sometimes even on the weekends. The speed at which he returned calls was unbelievable. He even squeezed me in for quick office visits at the last minute when I was concerned about something. I know he had many other patients, so I am still not sure how he did it. Maybe he is really a superhero?
Dr. Brown is most definitely a surgical one. His knowledge and skills are impeccable and I developed absolute trust in his judgment. A month out of surgery, I was having some issues and Dr. Brown sent me over to the ER to get a CT scan. After I had the test, other doctors came in and told Doug and me about the next steps. They did a fine job, but I still couldn’t wait for Dr. Brown to stop back to discuss the results and plan. Somehow it put me at ease to hear about it all from the doctor that I trusted the most.
Much of that trust came from Dr. Brown’s amazing bedside manner. He had the exceptional ability to be both direct and honest in his communication, but also compassionate and kind. He took the time to get to know both Doug and me, and treated us as friends. One day he called up to my hospital room just to recommend that I stroll to a nearby park because it was nice outside.
What do you think? That was one of the things Dr. Brown said often. He really took the time to listen and get our opinions. He empowered Doug to be a partner in my care and spent just as much time answering Doug’s questions as my own. I can remember sitting on the couch and hearing the two of them talking on the phone about how to carefully pack gauze into a small tunnel that had developed in my abdominal wound. I loved it because Doug had never done anything like that before, but really wanted to do the best job possible. Dr. Brown was always so encouraging and confidence-inspiring.
When I was in the hospital with my final UC flare, my GI doctor told me that if I wanted to pursue surgery, she wanted me to have my operation with the best. I will forever be grateful that the referral sheet she gave me had Dr. Craig Brown’s name on it.
“I think it is going to bust open,” I cried in a panicked voice. A small gap in my incision had formed the day before, and I had just lifted up a dressing to discover that it was now twice as long, much deeper, and oozing copious amounts of drainage. As always seemed to be the case when things went awry for me post-surgery, it was the weekend which meant I had to wait a couple of days to get in to see my surgeon. Fortunately, my mom, who had flown in from Washington to help me out, was there to keep me from going crazy with worry.
There is nothing like having your mom close by when you are hurting, and her presence comforted me to no end. My mom and I have always been close, and during her visit, it felt just like the old days when we spent a lot of time together. In the two weeks she was here, we managed to have lots of those mother-daughter chats that I miss so much. We also took trips to the mall so I could get my post-surgery exercise and try on fun clothes to help me feel confident about my brand new ostomy. She cooked for Doug and I, and even made a just-out-of-surgery-safe Thanksgiving dinner. Even though I felt poorly, I have the fondest memories of her visit. When she left, I cried because I missed having her here.
I know my dad wanted to be here too, but he was not able to make the trip out from Washington state with my mom. That was okay… his love was with me. I also knew he was sitting back there worrying about me every second like dads always do. He called every day to check in and let me know he was thinking about me. I was grateful for the sacrifice he made in being without Mom to keep him company for two weeks. I know it must have been a very difficult and lonely period, especially the timing being right over Thanksgiving which is normally a time to be close to your loved-ones.
Still, my family is used to being spread out over great distances. Not only do my parents live all the way out in Washington, but my older brother lives in New York City and at the time of my surgery, my younger brother was living in B.C., Canada. He now lives in New York City too. Though they couldn’t be near, my brothers called often to give me support when I was making tough decisions about surgery and to cheer me up after the operation. It was fun explaining to them what it was like to have an ostomy. I am sad that I hardly ever get to see them, but I feel their love with me all the time. Usually when my brothers and I finally meet up again, even if a year or two has gone by since we last saw each other, we start talking and hanging out like barely a day has gone by. I love that.
Doug’s parents were there for me as well. When I was in the hospital with my UC flare, my doctors would allow me to go for walks outside as long as I was with someone and it was during the daylight hours. Doug couldn’t always get off from work during those times, so his parents would come visit often and take me on strolls outside. Those days in the hospital were so long and monotonous, and I appreciated their visits so much. Once I could start eating regular foods again, they brought gluten-free pretzels and cookie treats to my hospital room to help me start gaining the 25 pounds I had lost. While I was later recovering from surgery, Doug and I would go up to his parent’s house in Fort Collins on the weekends where I could rest while also getting a change of scenery. In between short walks outside, I would curl up on the couch and watch football games with Doug and his dad, usually dozing off until a loud HOORAY would wake me up and alert me to changes in the score. To this day, whenever I am up at their house, it feels like a place of refuge. I look at those couches and just want to cuddle up in a blanket. So much healing happened there and I am so thankful for the love and support of Doug’s family.
When the incision I mentioned did end up opening due to my body being uncooperative in its healing, I found myself heading back to surgery to have it repaired. The hospital had signs posted that only a couple of family members were allowed in the pre-op area at once, but due to the evening hour and things being slow, the staff made an exception. There around my bed were Doug, my mom and Doug’s parents all cheering me on. I knew my dad and brothers were thinking of me too. At that moment, I felt the incredible love of my family so strongly. They were there for me then and always are.
I am relieved to report that when I woke up this morning, the pain I was experiencing around my stoma yesterday was gone. As it was my appliance changing day, I showered without my pouch and wafer on and palpated the area around my stoma really well. Everything felt fine–no pain, swelling or weirdness of any kind. Whew! I am confident now that what I was experiencing was just a sore muscle.
It is interesting that normally I get a bit excited about sore muscles the day or two after a workout. It is usually a sign that I worked hard during an athletic activity and took things to “the next level.” However, when I feel such soreness in the muscles around my stoma it doesn’t make me feel good; it makes me fearful. I don’t know how to get over that. I guess whenever those muscles get sore from a workout and then the tenderness resolves as it did today, I will get more confident that all is okay.
I did end up going out for a run today. I still felt a few minor twinges of soreness around my stoma as I was bouncing down the trail, so I kept the pace extra slow and only ran for 30 minutes. Tomorrow I work and have my local ostomy association monthly meeting in the evening, so I will take another rest day from running. Hopefully by the following day I can start going out each evening again. I am finding that out of all the activities I am returning to after surgery, running is coming back to me the slowest. Even short runs tire me out so much more than hiking all day up big peaks with a pack did over the summer. I hope that this starts to change this winter. I am really yearning to get back out on some of my favorite trail runs, but they would still be too hard at this point. Didn’t I just tell myself to be patient yesterday? Darn, I already forgot!
It is obvious when reading my blog that I am happy with my ostomy and super thankful for the surgery. However, there are still days on which the fears capture me. This morning when I woke up, my abdomen was unusually sore to the touch in about about a 3-inch perimeter around my stoma. It has been a while since I have had ostomy-related pain of any sort, but I was instantly taken back to those days after surgery when I was desperately trying to sort out what was normal pain and what might be something serious. I had a short period of intense anxiety issues after my surgery due to some complications (I hope to write a little more about this in a future post), and this morning I was back in that place for a moment.
My stomach clenched up and my head spun in a storm of worry thinking about all the things that the pain could be from. I knew the pain had nothing to do with a blockage, my output was completely normal in consistency and quantity. In a moment of rational thought, I remembered all the exercise I had done during the week. Two nights ago, I had upped my workout at the climbing gym. It was the first time I had ventured onto more vertical routes– still easy but slightly more strenuous than the slabby ones I had been doing. This week I also went from running every few days to running 30-45 minutes each evening. The runs I had been doing previously were short mileage-wise and slow, but last night, I felt carefree and energetic, and I ran faster than at any time since surgery. It was invigorating to fly down the trail at a brisk pace and with no rests. I couldn’t wait to go again today.
But now this pain. I really hope I didn’t overdo anything and cause injury. Tomorrow is my appliance-changing day, and I will get to take a better look around the area. In the meantime, I am actually relieved that the muscles on the other side of my abdomen are starting to hurt as are my calves. That means that the pains around my stoma are likely nothing more than sore muscles too. I am going to guess that they just came on sooner and fiercer because that side is much weaker. I canceled my run for the day and went for a speedy walk instead.
One would think that a year after surgery, especially with all the hiking I have done, that my body would be ready for such a workout. When I am feeling so well and healthy, it is incredibly difficult to know how hard I can safely push myself. The little pieces of colored tape marking even the 5.7 rated routes (an easy-to-moderate grade) at the climbing gym keep tempting me, as do the steeper trail runs. How will I ever know when I am ready for these? I wish that there was some kind of manual that said 365 days after surgery you should be able to do A, B and C. Seeing that there is a much higher likelihood of going downstairs and finding a sloth sitting at my dinner table holding a fork in his three toes than acquiring such a publication, I will have to continue to proceed through trial and error.
I hope tomorrow when I poke around my stoma that everything feels great, and that I can slip on my running shoes once again and hit the trails… albeit with the pace turned down a notch. Patience, Heidi, patience.
My name is Doug, and I’m the lucky one who is married to Heidi, the champion of the effort called Ostomy Outdoors.
When Heidi started this blog six months ago, I didn’t imagine that I would be writing in it myself. You see, I’m not an ostomate. But I live with an ostomate, and I’ve become intimately familiar with a whole new world of experiences, vocabulary, and feelings related to ostomies, surgeries, and recoveries.
I found out from Heidi that it’s not just people considering ostomy surgery who are reading this blog and watching the videos. Some readers are people like me: intestinally healthy friends, family, and acquaintances of those who have IBD, Crohn’s, ulcerative colitis, and/or ostomies. So, I figured it was time to diversify the writing a bit on Ostomy Outdoors, and try to provide not only a different perspective for this readership, but possibly serve as a sounding board for the “others” who are in the lives of readership.
Snow is soon to fly in the mountains, and my peak ascending opportunities are going to be more limited for a while. I have turned my attention to getting back into running, something I have been neglecting while preparing for and carrying out all of our backpacking and summit trips this summer.
I have decided I want to begin training for the 2012 Crohn’s & Colitis Foundation’s Team Challenge half marathon. I know I won’t be ready by this December, so I plan to work up my strength and endurance and then join the organization’s formal training group next fall. I am super excited. I did several 5K and 10K runs, including one trail running race in my pre-surgery days, but never a half marathon.
In the past, some of my worst ulcerative colitis flares happened when I was training for races. I believe running aggravated my colon. I knew where all the restrooms were on my running routes. Sometimes on routes where no bathrooms were available, I can remember speeding up on the last mile, bursting through my front door and barely making it to the bathroom on time. On trail runs, I used to bring toilet paper and supplies in my waist pack to dig an emergency hole in case I really had to go. Gone are those days! My appliance adheres really well through exercise with no leaking issues to date. As long as I empty before I head out on runs, I will be good to go for hours.
I was looking through a little spiral-bound book that I kept my journal entries and notes in during my hospital stays. I thought it was interesting that last year around this time I was keeping a log of my bowel movements in it to report to the doctors and nurses in the hospital during my final flare. Now I am starting up a running log. What a change!