Colonoscopy

Cancelling the appointment with that one was probably an excellent choice. While he’s probably not stupid enough to have really meant “colonoscopy,” he’s being much too casual about your circumstances.

It’s certainly possible that you have Crohn’s, and it’s possible that passing a scope into the ileum might prove it. If he actually billed for a colonoscopy after doing that then he should be prosecuted, IMO, and it’s not at all clear that you need it. If you develop new problems or your abscess seems to be coming back then you’ll need to deal with that, and if you were insured it might be worth clarifying the diagnosis. In the meantime, maybe try to find a different GI with a less grandiose approach.

FWIW, J-pouchers can’t even get a true sigmoidoscopy, since we no longer have a sigmoid colon. A pouchoscopy is often done with the same instrument, though, called a sigmoidoscope. Pouchoscopy should probably be cheaper than sigmoidoscopy (it’s faster and easier), but I wouldn’t expect to win that argument.

Thanks Scott. I edited my post (the parentheses about the biopsy) while you commented. Could it be the doctor needs a longer scope to check since he is wanting to do a biopsy?  Of course, I still think he is using the wrong tool for the job. This is all too technical for me. 

If he wants to do an ileoscopy (still not a colonoscopy!) then he might choose a different scope, but a sigmoidoscope is already longer than needed to scope a J-pouch. A critical question for any test, whether you are paying for it out of pocket or not, is what will change based on the results. Right now he thinks you probably have Crohn’s. After this proposed ileoscopy he might possibly have better diagnostic information, but will the treatment change? My guess is that it won’t: he’ll recommend treating this as Crohn’s with or without the ileoscopy. But it’s a perfectly reasonable question to ask him.

He is definitely using the wrong terminology. It’s an ileoscopy. I have had inflammation in my neoterminal ileum (although it abated on my recent scope) and they use a flexible scope. It’s designed to push up into the neoterminal ileum to determine if there is inflammation there. Once inflammation is seen in the J pouch it’s automatic that they push up into the ileum and take a peek. I got my J pouch in 1992. No inflammation seen in J Pouch until 1995. Then they started pushing up into ileum and peeking around. No inflammation was seen in the ileum until 2007, 15 years after I got the J Pouch. I have been scoped annually every year since 1992 and never heard it called a colonoscopy. I had UC 1972-1992 and recall the rigid scopes used in the 1970s. I had colonoscopies done every year in the  1970s with no sedation with the rigid scopes. They did not sedate kids. Was against the law or something. The procedure was like a medieval torture. It still doesn’t make sense why the medical profession was so barbaric back then.

Looking up could guide the treatment choices as inflammation in the ileum is a bit more resistant to biologics than in the J Pouch. J pouch inflammation seems to respond faster to Remicade from what I am told and did in my case as well. Not sure what else might change though and the question suggested by Scott is a very valid one that should be asked.

Here is my take: I think he scheduled it as a colonoscopy for the procedure room and the sedation. Doubtful he would use a colonoscope, as the ileum is quite narrow compared to the colon. A sigmoidoscope (even the flexible one) is much thicker in diameter than a colonoscope. For going higher up in the small bowel, an endoscope is needed (like what they use for an upper endoscopy). My GI uses a pediatric endoscope. (CT- there is no rigid colonoscope, you are talking about a rigid sigmoidoscope and they did not sedate for adults or pediatric patients).

Anyway, if the intent is to explore further up the terminal ileum to look for possible Crohn’s lesions, sedation will be necessary. On my scopes, they always go a bit beyond the pouch, maybe 6 inches or so. I don’t get sedation, but the cramping can be pretty intense when the air is instilled in the small bowel. The biopsies are painless.

Bottom line, you need to follow up with the doctor and find out exactly what is going on and why. I would not assume that he does not know what he is doing or that something improper is going on. Regardless, you would not need a full colonoscopy prep no matter which scope is scheduled for you. Don’t get wrapped up in the nomenclature, but do get answers. When speaking to staff make sure to tell them that you have NO COLON and you need instructions from the doctor.

Jan

Thanks Jan. I agree with your assumptions and thought he would say that when I called to clarify. However, I couldn’t have clarified or asked in any other way and I mention the ‘no colon’ thing. I also mentioned the price difference and that I was self pay. His response was to do the colonoscopy as he initially scheduled and wouldn’t budge. I know he knows the difference and was dead set to schedule me for a colonoscopy. If it was to just book the room and then change he could or should have told me that but he insisted on colonoscopy (which I would have to pay for prior to the procedure).  I’m not going to pay double for a procedure I don’t need.  I do get wrapped up in nomenclature when the cost is twice as much.

My surgeon (thousands of miles away) confirmed later today what you’ve all been saying that I need a ileoscopy, pouchscopy or sigmoidoscopy but not colonoscopy. He also confirmed that an anal fistula does not ‘only occur’ in Crones patients but it would be good to check for it.

I think I need to find a different doctor. I do think he is a good doctor as was happy with him and hope it is miscommunication (and his intentions were as you described) but I need to be able to communicate with my doctor and he with me. If I don’t understand why he wants to do something he needs to explain to me why or tell me I am being too literal with terminology.  I do think I need a sigmoidoscope but he wouldn’t schedule that for me so I will find someone that will. 

Back in 2009, I made the very difficult decision to leave my New York City based pouch specialist, for cost/insurance coverage reasons. I semi-regret that decision because with the insurance deductibles I had in subsequent years, I ended up paying as much or more with a more local Connecticut J Pouch specialist. The NYC specialist always returned my phone calls whenever I had any questions and we would many times have 15 minute conversations. I learned a lot about Pouch treatment from him and look back fondly at those days even though I am happy with my current specialist, who is equally responsive and helpful but at age 70 probably very close to retirement.

The bottom line on any doctor is your comfort level with the doctor. If it’s not there a switch should be made. Your concerns are very legitimate and have not been adequately addressed from what I gather from your summary of the communication.

Jan- yes I think they were called sigmoidoscopes but I just referred to it as a long rigid scope. I don’t understand why they were not made flexible back in the 1970s nor do I understand why kids were not sedated. I was very traumatized by the experiences and for a long time as a child had a morbid and irrational fear of medical procedures of any kind as a result. I think I had a form of PTSD that went undiagnosed which gradually went away with age and experience. But no child should ever have to go through that. I can still remember my doctor talking to me as I expressed pain, matter of factor telling me “it’s almost over”, when it clearly wasn’t and went on for much longer. I wonder if obstetricians say the same thing to women experiencing the pain of childbirth. Never had to deal with that pain, being a man, but I can imagine it as also being awful.

CT. I hear ya. I am so thankful my surgeon still talks to me on the phone years later. That type of care is hard to find and so greatly appreciated. It is frustrating when doctors will only talk to you with an expensive office visit. It is so much more humane. 

About the old equipment... yuck. I’d have PTSD too. I’m still squeamish with needles. I do like being put to sleep, it makes procedures much easier. I can’t imagine not being sedated as a child. I’ve never had children so I too don’t know the experience of childbirth either. And I’m glad. 

PS Jan. Thanks for the description of how exactly they do your scope and what they use. When I find someone wanting to do the correct procedure I will double check what they say they are going to do with what they do with you.