Life with a j-pouch hasn’t been all farts and giggles. In fact, I wish there were a ton more farts. You think you know a satisfying expulsion of gas from your derriere until you have a j-pouch. Then you realize you had no idea.
My j-pouch journey started in December of 2016 when my large bowel decided to start bleeding profusely and didn’t stop for weeks. At first I thought it was just watery diarrhea accompanied by some blood and a fever. But then it never stopped. It just kept coming out. All day, day after day, for almost two weeks.
Of course, I didn’t feel so great. I called the doctor and got antibiotics. I went to the store and got Ensure and Gatorade. But it just kept getting worse and worse. At least every hour I was on the toilet gushing blood from my rear end. It was even worse than it sounds. I was also constantly soaked in sweat and incredibly tired, but unable to sleep.
One day I mustered up all my strength to go to an urgent care clinic. They didn’t know what was wrong with me, but my pulse was really high and I can only assume I looked awful. So I got an IV of fluids while I laid on the examination bed. I actually felt a little better.
The urgent care place was in the parking lot of a grocery store so I went there directly after to buy more Ensure and Gatorade. People were giving me weird looks. I imagined I just looked sick. Only looking back later did I realize I probably looked really sick.
Getting back to my apartment I was still feeling better from the extra fluids, but went straight to bed and continued to lay there and stare at the ceiling while the TV played over-the-air reruns of 70’s cop shows. And I sweated. And I got up only to get to the toilet in time to lose more blood.
I think things started to become a blur in my memory at this point. Nothing really changed hour by hour. Well, I do remember projectile vomiting out all IV those fluids during the night. But other than that, I just laid in bed drenched in sweat, exhausted, and only getting worse.
At some point it became a Sunday afternoon. I normally visit my parents on Sunday afternoons so they called to check on me. I mentioned that maybe I was a little sick. And that I needed them to come get me. This is probably where my life was saved.
My parents arrived in about 30 minutes and I was able to make it downstairs and into the car. Little did I know that would be the last time I’d see my apartment. The next few days included laying on my parents’ couch trying to eat and drink. And, of course, going to the bathroom.
Then luckily, one morning I didn’t make it to the bathroom in time. I told my mom that I made a mess, but had to go lie down. She walked into the bathroom and realized that it was blood. Pure blood. Not bloody diarrhea water. Actual blood.
This is when worry turned into panic. My dad drove me to the doctor. I walked in with my pants falling off because I forgot my belt and sat down in the waiting room. My mouth was so dry I couldn’t talk. Then we got called back to the doctor’s office. The nurse came in and took my pulse. Then left right away. The doctor immediately came in, took one look at me, and said to go to the ER.
This was the beginning of 35 straight days in the hospital. It began with getting to go to the front of the line at the emergency room. Then going straight to the big operating room. Then being surrounded by doctors and nurses. I’ll never forget that scent of saline when they started the first IV. A blood test revealed that my hemoglobin was at 5.2 (normal should be around 15). I was in severe hypovolemic shock. Apparently my face was stark white and my resting heart rate was over 150. At some point later in the night I was taken upstairs to a room.
I had a few GI doctors, an infectious disease doctor (I was quarantined for a few days due to a C. Diff. scare), and some other doctors running tests and trying to figure out why I wouldn’t stop bleeding. I received several blood transfusions that I tried my best to keep in my body, but I was still having explosive bloody diarrhea 24 hours a day.
Then one day they say, “Oh by the way, your insurance isn’t good here so we have to transfer you to another hospital.” On Christmas Eve afternoon I boarded an ambulance to go across town to a hospital that accepted my insurance. It was the very next day at this hospital where my life would be saved again.
December 25, 2016 is when I had emergency surgery to remove a section of perforated bowel and woke up from surgery with a colostomy bag. To be honest, when they told me I was having surgery the first thing I was looking forward to was being put under so I could actually get some sleep. I hadn’t slept or eaten in two weeks. I would be on ice chips and painkillers for the next two weeks.
When I finally got to eat, the hospital food was SO good. Later I realized that the high-dose steroids might have had something to do with it. But it was still good.
So at this point after the surgery, doctors were still running tests trying to figure out what had happened and why I was still bleeding. Turns out it was ulcerative colitis. They thought. They were pretty sure. My entire colon was like “wet tissue paper” as the surgeon put it. But the steroids had taken effect and I was put on Humira, an immunosuppressant to counteract the autoimmune disease I had been diagnosed with.
Fast forward a few weeks and I’m finally on my way home from the hospital, 40 pounds lighter and pooping into a colostomy bag.
It really wasn’t that bad having a colostomy bag. They told me it might be as little as three months with it. But of course, it ended up being over a year. I got used to it. I even went on a few dates while I had it. The dates didn’t work out, but based on my previous track record I don’t think it was totally the colostomy’s fault.
Over the year with the colostomy bag, there were various hospital stays, a collapsed lung from a colonoscopy-related bacterial infection (don’t ask), and a few other comparatively minor things.
But eventually, they had enough biopsy results to conclude it was ulcerative colitis and that I was a candidate for j-pouch surgery. If it were Crohn’s disease, they wouldn’t do the j-pouch surgery because Crohn’s can affect any part of the digestive tract while ulcerative colitis only affects the colon.
More posts by Robin:
Who thinks about being grateful for something that produces nothing but bad smells and culinary relics?
What it's like to wake up in the ICU with a colostomy bag attached to your stomach
My next step was to find a colorectal surgeon. Strangely enough, the manager of the storage unit where my parents had stored my stuff after moving me out of my apartment had a similar surgery and had a surgeon to recommend. So I went to see him.
After a few visits, we scheduled the first part of the j-pouch surgery. I had to get in shape the best I could, drink more Ensure (I’m sick of Ensure), and prepare my body for the surgery.
Typically, j-pouch surgery is separated into two or three steps. My surgeon decided to do it in two steps. The first step is the more difficult one and takes the most time to recover. It involves completely removing the large intestine and rectum and then rerouting the small intestine to connect directly to the anus. At the same time a “pouch” is formed by folding the small intestine over itself and creating a reservoir to store stool. During this part of the surgery, the surgeon also temporarily diverts the small intestine to empty into an ostomy bag while the new pouch heals.
So, I went from a colostomy to a temporary ileostomy. And in just a short 6–8 weeks, I’d have the relatively minor surgery to close the ostomy all together and start using the internal j-pouch reservoir to go to the bathroom in a more conventional fashion.
But… things never seem to work out that way. My parents said the surgeon came out a few hours after the surgery was scheduled to end and looked completely exhausted. My large intestine had to be scraped out because it had basically fallen apart and what remained was covered in scar tissue. In this process, despite all the pre-surgery cleansing, bacteria were released into my system. That turned into highly-aggressive pneumonia and I was on heavy antibiotics 24/7 that night. My lungs had already been compromised from the earlier pleural effusion and pneumothorax. I even had to have clearance from a pulmonologist before the surgeon would do the surgery. But, you know, things happen.
The next couple of weeks in the hospital were weird. Have you ever heard of Ciprofloxacin-induced acute psychosis? I’m pretty positive that’s what I had. Or maybe it was my body adjusting to no longer having a 5-foot long body part. I have tons of stories about my delusions, but I won’t bore you with them now. Let’s just say it took me a few weeks afterward to realize they weren’t real and that I wasn’t really excited about going back to that hospital for a while.
Since there had been another incident with my lungs, and the fact that there isn’t really any hurry to close the ileostomy, the surgeon decided to put off the “takedown” surgery for as long as possible. So 6–8 weeks turned into 7 months. And gratefully, that surgery went smoothly. I finally started using the j-pouch and I was out of the hospital in a few days.
It’s strange feeling going to the bathroom the “normal” way after having had an ostomy bag for so long. It’s not like it feels right or the way it’s supposed to be. It’s just different. I had gotten used to having a bag and it was another routine aspect of life. In fact, now I had to worry about crapping my pants.
Life with a j-pouch, for me, hasn’t been completely easy. Far from it, so far. There’s been quite a bit of pain and discomfort, nausea, fever, and diarrhea. I have good days when there’s little to no pain and most days it’s mild. On the worst days, there’s a lot of pain and I don’t eat.
However, I have another complication that could, once fixed, make things a little easier. It’s an enterocutaneous fistula where my intestine has attached itself to my skin along the surgical wound. Oh yeah, I forgot to mention the open ventral hernia repair to fix the gigantic hernia I had from the original emergency surgery when they had to reopen the wound due to infection and my stomach muscles were completely separated for 5 days or so. They never reattached themselves. So now my abdominal muscles are held together by a giant piece of mesh.
So the hernia could actually be to blame for a lot of my complications with the j-pouch. First, because I had no muscles to contain things so air and liquid just kind of floated around in my small intestine. In fact, for a while you could see my intestine writhing around directly under my skin. Yes, just like Alien.
While fixing the hernia and “closing” the muscles seemed to help, it also led to the fistula that seems to be causing routine infections. The main hope is that it will eventually close itself because the alternative is another surgery. It’s a tiny fistula so there’s no rush to reopen the wound and possibly deal with more complications.
So is life better with a j-pouch? There’s the definite plus of not having to deal with an ostomy bag. Not because an ostomy bag is gross, but it’s almost like why someone gets Lasik. It’s just one less thing to worry about. No changing bags, no middle of the night clean-ups, and no expensive supplies. Ok, in all honesty, yes there is the desire to no longer have an ostomy bag to avoid the social stigma and anxiety. But many people actually choose to go back to a bag because the j-pouch either fails or has too many complications, or gets in the way of their life more than the ostomy did.
Will everything work out? And will I live the rest of my life in a good relationship with my new digestive system? Who knows. My life with a j-pouch is just beginning. But as I sit in here running a fever in a pair of Kroger brand depends because I’m trying to pass gas and might get an extra surprise to go with it, this is just another part of the journey. A journey that has helped me realize I can deal with much more than I ever could have imagined. And for that, I’m grateful.