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I just cannot believe the ignorance of the medical profession. Twenty years ago, after my first surgery, I figured the procedure was new, and I gave them a break. But today I have totally lost my patience and can only scream! Scream! SCREAM!
The rheumatologist I have been seeing for five years kept asking me today; “What happens when your gut is acting up?” I told her I just didn’t understand what she was asking. She said “Well, how much of your colon do you have left?” After explaining to her that I had a complete colectomy her reply was: “But didn’t they use some of your colon to make the pouch?” After five years! (Insert SCREAM here)

But wait! The nutritionist called me this week to discuss our upcoming consultation. She could not understand why I kept talking about absorption and hydration, the gastro that made the referral stated I had COLITIS! (Insert numerous SCREAMS here).

If anyone in the Hartford, Connecticut area knows of medical professionals that can really address the issues of J-pouchers,pleeeeaase, give me a clue. Please, Please, please!

Sorry if I hurt any ears!
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I agree, more info needs to be included to the specialist. Trouble is, docs/other medical personnel are forced to use ICD-9 codes which do not necessarily describe the problem at hand. ICD-10 include lots more numerical codes to help describe the problem at hand, but whether they help remains to be seen. (over 10 ICD-10 codes to describe whether the hit you took by a tropical bird, parrot vs nonparrot, was traumatic or not).
It is frustrating, and I completely understand where you are coming from. Most of us have and will continue to encounter ignorance in the medical profession. I'm still my GP's only patient with a pouch, and while she has made an effort to learn, now over 4 years out from my surgery, she clearly still has a very poor concept of what typical norms and expectations are for pouchers. Last year she told me that going to the bathroom 4-6 times per day was far too much and I should see a GI immediately. She also continues to ask me at my yearly physical about "flares." *faceplant* It's hard to remain patient in such situations, but on the flipside, I try to make it my goal to educate health professionals about life with a pouch whenever the opportunity arises, as some doctors are actually quite interested and will ask you a lot of questions. I see that as a bonus on both ends; the doctor learns a bit, and it might actually help them focus a little better on my care instead of going off on 18,000 tangents irrelevant to what the purpose of my visit is.

But obviously it doesn't always work that way, and understandably, there are doctors who are not willing to admit that their knowledge may be inferior to a patient's. The only other thing you can do is literally have your surgeon or GI call the rheumy to discuss your situation. I have had my GP talk to my surgeon once before. Often doctors are more willing to accept "education" or information from a colleague physician rather than a patient. That said, I haven't ever been able to shake off the diagnosis of UC either. It seems once you have UC, you're always labelled as such, colon or no--though considering that you can have other manifestations even after the colon is removed, that is probably accurate.
Last edited by Spooky
Apparently it's still a rare enough surgery that a lot of medical people are clueless. The diarrhea question is always asked. After reading the nurse's notes, recently a PA came in and asked us what "pooch-itis" was. A number of doctors have opined that any GI would be suitable for following a j-pouch patient. I disagree.
I totally agree with Connie. Any GI is not suitable. I love my GI but up until recently I was her only poucher. It's always a treat to go for a scope and have her assistants ask where my 'bag' is. But even with only one j-pouch patient my GI will do her research regarding pouches. If she feels anything is beyond her she refers me to a GI in a large city who actually does see pouches fairly regularly.

kathy Big Grin
In the 90's, after having severe abdominal/pouch problems (I have a k pouch) my adorable and adoring surgeon of 10yrs (chief of viseral surgery in a major teaching hospital here in France) finally decided that it was urgent to opperate. I woke up with a bag stuck to my stoma. My friend asked the surgeon if he had to give me an outside bag and he said worst nightmares had come true.
I had lost my k pouch. Then when the nurse came in to 'empty my bag' she unglued it. It was just glued to my stoma. Period. He had not touched my k pouch or removed it or given me an end ileo. He just thought that while I was sleeping it would be nice for me to be able to empty into a bag.
K pouches must be intubated. He didn't know. Had no idea how they functioned...And he opperated on it!!!!!
Since then I am on a campagne to educate and teach medical professionals about k pouches/j pouches....they are the unknown option here in this country.
Definitely agree. Not any GI is suitable. In fact, once my former GI referred me to the surgeon who performed my j-pouch procedure, that effectively terminated our doctor-patient relationship. I wasn't happy with the care I received under my old GI anyway so it was a blessing in disguise, but the point is, you need to find one who has experience with pouch issues.

Also, yes, kathy! I still get asked about my "colostomy" all the time, which doubly annoys me because I never even had a colostomy to start with. It was an ileo. GRRR. Smiler
Granted, being a nurse, I am biased. But, the way I see it, the facts and realities of our surgical history seem like common knowledge to us and we are dumbfounded when we frequently encounter healthcare professionals who know practcally nothing about the j-pouch. However, we are not common, and there is so much out there that doctors and their staff must know, it is impossible for them to know everything. I never have to repeat my story to the same provider, so I guess they learn. I remind myself that they have hundreds of patients and they do not see me often, some less than once a year. So, I cut them some slack.

Another thing I try to tell myself, is that it's probably a pretty good thing we are rare, don't you think? Hopefully, we'll become even more rare if they find better treatments to avoid j-pouch surgery.

Still, it can be frustrating to have to advocate for yourself all the time.

Jan Smiler
It's very true that j-pouch surgery is still relatively rare, so that is why it's understandable that many in the health profession haven't come across it first hand. Any time I have to see a new doctor, I go fully expecting to have to give somewhat of an explanation. Occasionally I'm surprised (my Gyn was quite well informed about j-pouches and I was very much impressed with what she asked and how she handled me). But I think the general beef (at least for me anyway) is with the doctors we see regularly who still, years later, haven't made an effort to grasp what having a pouch entails. That is what I find most frustrating, and I think others would agree as well.
Back in 2004 or 2005 my primary care doctor sent me for an abdominal ultrasound exam because I was having a sharp pain in my groin area which we suspected was a hernia due to me lifting something I should not have tried to lift. The radiologist's report noted a "tumor or growth filled with liquid", giving its exact size in centimeters and location in my abdominal cavity.

I was petrified and I assumed it was a large cancerous tumor. After informing my family and friends and loved ones and updating my will, I sent the exam report and films to my then New York City GI/J pouch specialist, because I figured this would cause J Pouch issues too.

The next day I got a call on my cellphone from my GI/pouch specialist. He was laughing. I asked him why he was laughing and he said to me, "that idiot radiologist in Connecticut described as a liquid filled tumor or growth your J Pouch. It is in the exact same location and has the same measurements as your J Pouch. He is describing your pouch, Dude."

Funny thing was I had told the radiologist tech assistant that I had a J Pouch. I guess that info did not make its way to the radiologist.
I had part of my left lung removed back in 1978 due to a major infection
resulting from Pneumonia. In 2004 following a chest x ray I was sent by
my PCP for an MRI to check a "large shadow" in my left lung that showed
up on the x ray. The shadow turned out to be the missing lobe from my earlier

Same thing, the radiology tech reported it to my PCP who didn't even open
my chart to look at my previous medical history. It's frustrating that all
of this stuff get's documented in detail and gets sent to different doctors
as time passes and then it never gets read or referred to.
Since we are all more educated on j-pouches than even many doctors I think we tend to forget that there is just too much about the human body that can rear its ugly head that doctors are stumped about. I was thinking this yesterday when reading about those FAP'ers Whipple procedures. Whipples have been mentioned here a number of times and I was thinking that I should at least have cursory knowledge of them. But I don't. Everytime I see the term I visualize some sort of plaything (Whiffle Ball? who knows...).

And even though most of us have had colectomies many of us had no idea that the surgery is also referred to as a 'radical appendectomy' because the appendix goes when the colon goes.

I try not to judge too much but as I said, it does drive me bonkers when a GI gets colostomy and colectomy mixed up. They definitely should know the difference on that one.

Srf1 - I had a doctor tell me that something 'showed up' on my lung xray during my second of three surgeries (at UCSF). I started getting concerned because this 'doctor' was trying to bully me into being catheterized even after I explained that my personal system doesn't wake up as quickly as other people's. She said something about lung surgery/lung removal. She also mentioned that without the catheterization that I'd end up with a bladder bag.

Turns out that the lung xray was for some other patient and that as I had told her things started flowing after a bit thus no bladder bag. She was forced to come in to apologize to me. It was one of those apologies that begin, "I'm sorry BUT...." I told her she probably should rethink her career choice and not work with real live patients. I told her that she should consider being a medical examiner so she didn't have to have her 'patients' questioning her mistakes.

kathy Big Grin

kathy Big Grin
I can relate. In so many situations over the years i have felt like a guinea pig! 6 months after my surgery I had an emergency hystorectomy and I had told the dr. that he had to call my GI first and he assured me he did and felt ok to do the surgery. After the surgery I realized he had opened my entire scar again and it should have only been a tiny cut. His response was, " I never saw a j pouch and was curious as to how it functions." I was furious and so was my GI. I ended up having 2 exploratories and removal of adhessions after that. After that I told my GI surgeon nobody else would ever open my zipper but him.

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