I had j-pouch surgery to treat dysplasia and ulcerative colitis when I was 26 years old. That means my colon and most of my rectum were removed. A part of the last section of my small intestine (the ileum) was used to create a “pouch,” which functions like a rectum to hold stool. The part of small intestine is folded back on itself and attached to the rectum in the shape of a “J.”
This surgery makes my life easier. This surgery makes getting healthcare harder
I had my first colonoscopy when I was 16 years old. At that time, I was seriously ill with ulcerative colitis, though we didn’t know it because I was initially misdiagnosed and then waited for care from a gastroenterologist. My condition worsened rapidly over a period of a few weeks.
There wasn’t any prep for that first scope. I didn’t need to clear my colon of stool because I was having dozens of episodes of bloody diarrhea, or just blood, a day. I presented for the scope, my new gastroenterologist had a look, and the ulceration in my colon was bad enough that I stayed at the hospital for 40 days.
I had another scope at age 18, around the time I graduated from high school. I remember it because I had the procedure that morning and went to a graduation party that night.
I prepped with GoLytely: a gallon of fluid that you are drinking a glass of every 15 minutes. Eventually you are drinking it while you’re on the toilet. You keep drinking until you are passing clear or yellowish liquid out your bottom.
I’m a rule follower (or I was) and a completionist, so you betcha I drank most or all of that GoLytely. I always told people it tasted like wallpaper paste.
Pelvic Pouches: Common or Rare?
After my j-pouch surgery, a subtotal colectomy with a creation of a pelvic pouch, or an ileal pouch-anal anastomosis (IPAA), I went for some years without having any scopes. It wasn’t clear what kind of care was needed for patients like me. I was doing well after the two surgeries, and my gastro team mostly said “see you later!”
It wasn’t until I started having digestive problems again and established care with a new team that I began having regular scopes.
There were a few endoscopy procedures I had where all the paperwork read “colonoscopy.” I would reiterate to every health care provider along the chain that I didn’t have a colon, but had a pelvic pouch. About 50% of the time, that led to being asked if I had an appliance with me to change after the scope. This then would lead discussion of the difference between an ileostomy (which I don’t have) and a j-pouch (which I do have).
The first time I got the consent paperwork and it read “pouchosocopy,” I cried. My endoscopist was matter-of-fact about it.
“Why are you crying?” they asked.
“Because it says ‘pouchoscopy’ and not ‘colonoscopy’,” I reply.
“Yeah, because you don’t have a colon!” they replied.
However, the paperwork never acknowledged that before. I inhabited a liminal space: I don’t have a colon, so I don’t have colitis, but I have an immune-mediated condition, and taking out an organ doesn’t change that, and my pouch needs to be looked at, because I have symptoms, but it’s not a colon, it’s part of my small intestine and a little bit of rectum, and there’s no one word to convey all that.
Inflammatory bowel disease (IBD) is not rare, it’s common. J-pouches might be considered rare? It’s estimated that between 150k to 300k people live with a j-pouch in the United States. (UOAA) The threshold for a rare disease is 200k people. (FDA) Again: liminal space.
What’s more, I am sourcing information from the United Ostomy Associations of America. A j-pouch is not an ostomy, though there are some significant crossovers. As of this writing, and to the best of my knowledge, there is no non-profit in the United States that focuses solely on j-pouch (or pelvic pouch) patients. Here we are a third time in that liminal space.
That’s also why getting my prep paperwork for my most recent scope and having it read “Pouchoscopy” was again significant to me. Previously, the prep was always titled “Colonoscopy.” It was also the first time that the prep was nothing to eat after midnight and an enema prior to the procedure.
What bliss. What absolute relief to not have to endure excoriating diarrhea the day prior to a scope, let alone not having to drink a bunch of Miralax, some of which also winds up being done while on the toilet. (See definition of perfectionist.)
Post-Surgical IBD Is Still IBD
I still occupy a liminal space. I’m mostly well, but I have symptoms and I still take medication. I have chronic fatigue and pain. I’m at risk for a host of things, including pouchitis and bowel blockages, so I have to monitor my diet and fluid intake every day. I have to get screenings and follow-ups with various specialists every year from my eye doctor, to my skin doctor, to my boob and uterus doctor.
I just don’t have a colon anymore. I don’t have colitis anymore…so what do I have? I have IBD, is what I say. Until we have the vocabulary to describe exactly what’s going on with me, that’s about as close to the mark as I can get.
But from now on: I’m not going to drink that Miralax anymore, because I’m having a pouchoscopy, not a colonoscopy.
Sources:
United Ostomy Association of America. J-Pouch 101. 2021. Available at: https://www.ostomy.org/wp-content/uploads/2021/08/JPouch_Infographic_2021-08.pdf
Food and Drug Administration of America. Rare Diseases at FDA. 2024. Available at: https://www.fda.gov/patients/rare-diseases-fda