Narcotic Bowel Syndrome.

Recovery after this most recent surgery looks a little different. In a good way, mostly. I mean, I was in the hospital for twenty nine days the first time, this most recent surgery I was only hospitalized for six days. Where they went through the same incision, sternum to pubic bone, and then some, all those rib and thoracic incisions, I didn’t need to start chemo and was much stronger afterwards. I could walk, after all, more than i can say for after my first surgery. Yes, I had another infection after the second surgery and it looked like I would die again, but I didn’t go septic like after the first surgery. I wish I could make a table breaking down how similar and different the surgeries were. The main take away is I came out of the second surgery better! I really wanted to use my recovery after the first surgery as a standard for my current recovery. I can’t.

My colostomy (abdominal poop bag) after the first surgery was horrendous! It was also very convenient. I didn’t give my bowel movements a thought. As long as I had an extra bag with me, in the end I was good to go. I had pool days, beach days, camping trips, and all the summer fun with that thing. Most of my closest friends didn’t even know I had it.

Now having your intestines reconnected is an altogether different experience. How much attention do I give that urgency to poop? Am I going to poop my pants? Is this just a false alarm? This cramping, am I going to have a bowel movement or not? Turns out when you take your intestines out of your body, they get a little freaked out, stop working, paralysis for a while. By the time I was discharged from the hospital they were moving again but not in a synchronized manner. They were sporadic and out of sync, part of me felt constipated and the other part felt like diarrhea. It was uncomfortable to say the least.

After two months of severe cramping, feeling not that my intestines alone were cramping but sometimes my pelvic floor and low back, and then there was that sharp swallowed a knife pain too. I was mildly concerned. I mean, after two months, my prior experience and medical knowledge told me things are mostly healed, fascia, muscles, intestines… The fact that I had days where I was spending all my time on the couch or limping around the house because of abdominal pain was definitely unnerving. I had a follow up with my surgeon to look at some open wounds I had along my incision and at my mothers prompting I described my frequent “discomfort”. “I’m sure it’s my diet, Mom! Let’s not make a deal out of nothing!” The resident I described my symptoms to was like, “yeah … that pain is abnormal for this time frame.” I know I don’t have an obstruction because I’m going three to five times a day. “I’m sure it’s diet.” I’m always very dismissive of my pain and problems (part of why I’m in this mess to begin with). Then Dr. Reeves, my angelic surgeon came in. He asked some more probing question about my symptoms and my meds. “Sounds to me like you have Narcotic Bowel Syndrome. You’re intestines are going through their own set of withdrawals. You need to slow down your tapering of pain drugs, I wouldn’t go completely off them for another two months.” I had been planning on going off cold turkey in like a week. “Oh no! Don’t do that! You’ll be miserable!” Well ok Dr. Reeves!

I can function normally. As long as I can allow my intestines their own way, three to five times a day. As long as I can stretch out on a couch for a couple hours between activities. As long as I take at least a quarter of a pill of Norco three time a day. (I’ve been tapering. When i was discharged from the hospital I was taking one pill every four hours, setting alarms in the middle of the night so I didn’t wake up with pain.) Some days my intestines are noooooooot happy, often it’s a day or two after I cut down my dose or forget and skip a dose. It’s debilitating at times. But I look good.

Most people just want you to look good and function well. So I do. Most people are really happy with me, not just for me. But I hate withdrawals. I hate the anxiety and hot flashes and aching mind gnawing pain of withdrawals. My intestines hate it worse. Poor guys have been through enough, now this? It’s alright. Time passes and so will this.

I’m still cancer free! I’ve had blood work done and my tumor markers are still really low and my labs are normal. I’m trying to stand in the belief that the cancer is gone and will stay gone. Another CT scan and follow up in the works! Still praying and fighting!!!