I was overdue.

All of us who live with chronic illness know understand the difficulties of working in all the appointments and procedures. Even when doing OK, there’s a list to get through every year. Now with being over 40 years old, that list also continues to expand. 

For me, a pouchoscopy means two days away from work and family life. Two days where I can’t be a mom and partner. Plus, of course, like any endoscopy procedure that’s done with anesthetic, I need someone else to take time off from their life to drive me there and back. Last year, with my kids in hybrid school, scheduling a pouchoscopy was difficult. 

In addition, there are many more circumstances serving as barriers to getting in all the necessary tests, office visits, and screenings done. I’m not different or special in that; none of us has been spared from the career, social, and familial difficulties during this pandemic.

Whatever the reasons, the result is that I didn’t have my pouchoscopy in a timely manner. 

Normal Is a Sliding Scale

After all these years, I’m used to doing this prep dance. I don’t mind it so much, really, because it has become part of my life. I also know how important it is for people like me to have regular screenings. I want to know what my pouch looks like on the inside, because that doesn’t always correlate to how it’s behaving.

More than twenty years ago, after I first got my j-pouch, I didn’t have regular follow-ups. I was well enough that it was thought I could go on my merry way. I suppose that was true for a while. One of the reasons I had surgery in the first place was that the biopsies taken from my colon showed signs of dysplasia (abnormal changes to the cells that can be a precursor to cancer). Even after j-pouch surgery, there is still a risk of developing colorectal cancer. For patients like me, the risk is low, though, usually thought to be about 1%.[1] Even so, it’s a good reason to keep up with screenings and biopsies.

But in my case, there’s also the ongoing issues with my pouch and other areas of my digestive system that need watching. I did well for many years but when problems started again, it became clear that I needed the yearly monitoring, not only to catch any changes in the cells in my pouch but also to look for inflammation.

The Polyps Can’t Quit Me

Several years ago it was discovered that I developed a polyp in my pouch. After having numerous polyps in my colon which was one of the reasons I had a colectomy, this news was really scary. It feels like being back at square one. A polyp in a j-pouch isn’t uncommon, but it might happen in less than 10% of patients.[2] (This is for j-pouch to treat ulcerative colitis. Pouch surgeries are done to treat other conditions too, such as familial adenomatous polyposis and colorectal cancer, and there will be different statistics for those concerns.)

One of the risk factors for developing a polyp in a j-pouch is having inflammation there. Which is no surprise, this is the same reason polyps can crop up with ulcerative colitis. However, I’ve only had pouchitis (an inflammation of the j-pouch) a few times, and those were all in the last 5 years. Did I have inflammation in the early years after my surgery that went unknown, because we weren’t looking? Or were the problems of the last few years enough to cause it?

Education and Research Are Key

We don’t know the answers to these questions as far as my situation is concerned. What I do know is that I’m an advocate for continuing to receive regular care after having j-pouch surgery. Being sent off with no plan for continuity of care is not the best idea. How often people with j-pouches should be screened and in what way that screening is done is going to vary from patient to patient. People with j-pouches and their providers will need to come to that decision together.

I think that j-pouch owners would benefit from, and are often looking for, more education about their new bodies. Patients need to know how to recognize when something doesn’t seem right, such as too many or too few bowel movements, new or changing abdominal pain, or persistent anal discomfort. 

They also need to know how to care for their adjusted plumbing as well as providers who understand what a j-pouch is and don’t confuse it with an ileostomy or colostomy. I often don’t mind educating staff about my j-pouch but it is difficult to be put in the position of needing to do so when presenting for an endoscopy procedure.

Over the years I’ve learned by trial and error with my own body, by talking with other patients, and by attending medical meetings where j-pouches are discussed. Even so, I’m still taken by surprise at times by how j-pouches work and are perceived. For that reason, I am inspired by Dr David Rubin, who created The IBD Care Bill of Rights, to develop the J-pouch Patient Bill of Rights. My initial proposal is below and I welcome thoughts from the j-pouch community on how to strengthen and disseminate these rights.

A J-pouch Patient Bill of Rights

• J-pouch education for patients should be formalized by the GI and colorectal surgery team
• Patients should be offered and encouraged to have ongoing touchpoints with their digestive health specialists
• A dietitian should be part of the team caring for patients with j-pouches
• Sexual and reproductive health impacts of a j-pouch should be discussed with every patient
• Care providers should be educated about j-pouches prior to interacting with a patient
• Patients should be given clear instructions on which of their care providers to contact in the event of pouchitis or other pouch-related problems
• When j-pouch problems are not resolvable with the expertise of the current team, patients should be offered a referral to a j-pouch specialist

That’s my list. What are yours? I look forward to your ideas!

References:
1. Derikx LAAP, Nissen LHC, Smits LJT, Shen B, Hoentjen F. Risk of Neoplasia After Colectomy in Patients With Inflammatory Bowel Disease: A Systematic Review and Meta-analysis. Clin Gastroenterol Hepatol. 2016;14:798-806.e20. doi:10.1016/j.cgh.2015.08.042

2. Liu ZX, Xiao MB, Wu XR, Queener E, Ni RZ, Shen B. Chronic pouchitis is associated with pouch polyp formation in patients with underlying ulcerative colitis. J Crohns Colitis. 2014;8:363-369. doi:10.1016/j.crohns.2013.09.020