In the first few entries of this series, I have been focusing on my decision to move forward with the colostomy, why, and what it means to me, and what it means to ask for help. I will be moving on now to talk about the actual experience. I certainly did not know what to expect when I arrived at MGH (the Massachusetts General Hospital) on February 22, and I was contending with a fear of hospitals, fear of anesthesia, and like everyone, a fear of the unknown.
I arrived at MGH at 6 o’clock in the morning to, of all things, a paperwork snafu. Apparently, at my preoperative testing the day before, they had sent me home without ever checking me out in the system, and the folks in the surgical center were both unable to check me in (since I had been checked in in a different department) and yet unable to check me out of the other department. This did not seem to bode well.
I am grateful that I put careful thought into who to bring with me to the hospital. Many who follow this blog, or my social media presence have probably heard reference to my friend Winter, either as the talented photographer on all of my professional headshots, or because of the touching tribute to our friendship that he wrote in his blog here.
What you might not know about Winter is that he is unflappable, generally adept at medical situations, knowledgeable of my medical history, and, perhaps most importantly, on the shortlist of people that can actually keep me calm in the face of adversity.
I doubt that many of you will arrive to a medical procedure still checked in from the previous day, but I do not doubt that many of you will have some routine paperwork item present itself when you arrive, and that at that moment it will feel anything other than routine. It pays to have a friend who can manage the situation and you at that time.
After what felt like forever but probably was not very long, my registration was resolved and I found myself beginning what felt like the endless line of presurgical discussions with residents, nurses, and people I could not identify. I had a two item checklist that was very important to me: first, wanted to make sure they understood my difficulties with anesthesia, and second I wanted to make sure that they understood my troubles with Foley catheters.
With each person, even if there stated role had nothing to do with it, I would answer their questions, and then, when they asked me if I had any other concerns, I would repeat that I really wanted to make sure that the anesthesiologist knew of my trouble with gas-based anesthesia so that appropriate precautions could be taken, but the surgeon understood that my recovery from a catheter was likely to be as long as my recovery from surgery itself.
Whether a testament to my persistence or a testament to the attention and care of my team at MGH, what I can tell you is that I was able to talk them out of the catheter, and that a creative anesthesia team came up with the sedation plan that completely avoided the use of the gas which I had such a negative reaction so many times my youth. I cannot guarantee what others’ outcomes will be, but it never hurts to ask and stick to your guns.
So, the surgery happened, and unless my surgeon writes a blog post, I cannot tell you much about that process, as I was blissfully unaware. What I cannot say is that waking up from this surgery was unlike any that I have ever experienced. First of all, I was not sick. Whatever those anesthesiologists did was nothing short of miraculous. Further, I have had worse pain from sunburns that I had from my incisions, worse muscle pain from a good workout, and worst gastric pain from bad take-out. Any person avoiding a necessary surgery has their own reasons for doing so, but anyone who is avoiding this one because of the fear of surgical pain should probably reevaluate. (I will note in passing that the one truly painful experience of my early recovery was my stomach’s reaction to the hospital kosher menu post surgery. If you do keep kosher, and you should have abdominal surgery, I recommend getting your food somewhere else.)
I will not say that my time in the hospital was without its challenges. Healing from surgery to your intestines means that every meal will have some discomfort, and that phenomenon did not truly fade until approaching six weeks post surgery. The first time that the glue of an ostomy bag pulls away from your skin puts every Band-Aid in the world to shame, especially if you have not yet begun to shave your belly, and you are a hairy guy like I am.
And yet, every little thing felt like a milestone. Sitting in the hospital with my mother and my friend Winter, waiting to see if the ostomy would work, we eagerly awaited every small eruption of air that meant that the stoma was beginning to work. Not since potty training 30 years before have I had quite so many people focused eagerly on the appropriate operation of my excretory system. The first graham crackers after two weeks of fluids were a delight, and while the hospital kosher menu was a problem, the first simple chicken my mother cooked for me combined the joy of Thanksgiving dinner, the relief of a Yom Kippur break fast, and the anticipation of that first bite of bread when Passover is finally done.
And, at least at MGH, the focus is clearly on reestablishing normalcy. I have never been in the hospital and had a nurse encourage me to order dessert with my meals. Everything they could reduce, from taking out the IV to ceasing to monitor my vitals once it became clear that I had had no complications from surgery all seemed to be designed to reinforce the message: you are healthy-learning your new normal.
I was in the hospital for a week because we were trying to get a rehab placement to help me figure out being independent, but I was medically ready for discharge four days after surgery, and it probably would have been quicker if I had had a little less belly fat and no complicating neurological condition. The overwhelming thing that I would communicate is that this is no big deal.
In fact, if you stop reading this series after this article, let that be the big take away. I will elaborate in the next entries, but I can tell you that with more than a week to go before the two month mark, this ostomy has become amazingly normal for me. Changing a bag is no more unpleasant than changing a toddler diaper, and certainly easier to clean. And I gained so much.
Even my first week after surgery, I had less pain than I have had in any week for the 10 years prior. The daily travail of my restroom routine, cramps and pressure sores, totally gone. Eight hours of my day restored, along with complete control of my schedule, since there really is no such thing as an emergency bag change with my type of colostomy. While I still prefer to have help handy and participating in bag changes to minimize the likelihood of an unexpected mess, I will never again be at the mercy of the winds of another person to ensure that my basic bio needs are met. I can eat without fear that I will need to frantically search for help, and worst take several hours out of my schedule even if I have it.
Obviously, some of my particular G.I. needs are specific to me and my disability. Each of you may have a different story. Yet, if you gotten to the point with this procedure might make sense for you, then you have some story of how the needs of your colon interfere with your life. Given the percentage of my readers that are people with disabilities, Eastern European Jews, or both, I would guess that they nontrivial number of you. If your doctor has mentioned this surgery, I invite you to consider just what you may have to gain. I will be exploring this more in future entries, so stick around.