Yes.  I find they often ask to see my pouch.  Then I have to explain my internal anatomy.  I am a nurse and there are times I have patients whom I have to ask about their previous surgeries.  We can’t be expected to know it all.

Yes, I have. Mostly dieticians and pharmacists. I have to explain, and as soon as they hear J "pouch" they think I have an external bag. Once, I had to show a medical person a picture printed from google so they would understand what it was and that you CAN live without a colon.

@Winterberry posted:

Yes, I have. Mostly dieticians and pharmacists. I have to explain, and as soon as they hear J "pouch" they think I have an external bag. Once, I had to show a medical person a picture printed from google so they would understand what it was and that you CAN live without a colon.

LOL I am not surprised, especially since the J-pouch is like only 42 years old

@Jaypea posted:

Yes.  I find they often ask to see my pouch.  Then I have to explain my internal anatomy.  I am a nurse and there are times I have patients whom I have to ask about their previous surgeries.  We can’t be expected to know it all.

Definitely, the J-pouch is only like 42 years old, so its still relatively new

Yes I have. I live in a realistically small city. We gave one Surgeon that does the surgery here! The GI doc that recommended I have it done knew very little to nothing about it!

@Aimc posted:

Yes I have. I live in a realistically small city. We gave one Surgeon that does the surgery here! The GI doc that recommended I have it done knew very little to nothing about it!

Lol! that is crazy!

I know! Kind of scary also.

@Former Member posted:

Lol! that is crazy!

@Aimc posted:

I know! Kind of scary also.

Definitely! I am glad that you had it done though and that you are doing good! I hope more people get educated on it ASAP, because if they do not, that can hurt us down the road

I usually have to say I have an illeal pouch for people to understand. Even when I do I still sometimes get asked about having an ostomy.

Years back (2007, I think), I went to the ER due to a blockage, and the triage nurse straight-face told me, “You can’t live without a colon.” I said, “Well that’s funny, because here I am.” Eventually another nurse, who was a floater and had been with me after surgery, came out and apologized and said the triage nurse was pretty fresh out of school.

Bottom line, it's up to the J Pouch patient to educate his or her medical providers. The medical profession, like the legal profession, is highly specialized. Outside of gastroenterologists, most specialists know next to nothing about J Pouches. It's especially dangerous to assume radiologists know anything. I actually told the radiology tech I had a J Pouch and she didn't communicate it to radiologist who came back with an abdominal ultrasound report (on  a suspected hernia) that my J pouch was a "large tumor." My GI at the time looked at the report and laughed as he told me the "tumor" was my J pouch. 

So don't assume any medical specialist knows much. Educate them. It's the same way in the legal profession. If you call me and ask me a question about divorce I would refer you to the divorce attorney at my firm because I know nothing about it. SPECIALIZATION. Don't assume that anyone knows anything outside of GI doctors.

Also important if you end up in an ER with any kind of abdominal injury. In the past I recall some thread about wearing something that IDs you as a J pouch patient. Your surgical scars don't establish anything other than you had bowel surgery. Make sure any relatives who could come to ER are prepared to explain. Educate them if need be. Knowledge and education = Proper treatment.

Thank-you for this answer! I never knew I had to explain in depth about it. I had radiology work done and I never told them about my J-pouch, and the radiologist thought I was missing my uterus!! HAHAHAA! I thought that was soo stupid! I see I should never assume for people to know anything about it!  My bad really

Hey, I was asked if they took out my appendix also! I was like hum.......really!

Yes. I have many health professionals not know. That is ok, but I agree we have to advocate for ourselves.

I had an MRI for back pain and my pouch, full of gas, hid a ruptured disc. I was never diagnosed. It wasn't until years later when someone mentioned I had evidence of a ruptured and healed disc that I put two and two together. My lesson is that the next time I need an x-ray or MRI on my back, I need to lie on my stomach. That way the pouch does not hide things.

With any radiology testing it's really, really important to communicate well on the J Pouch for reasons mentioned by kta and myself as well in my prior post.

I read MRI reports for a living and I occasionally see the radiologist reporting on an incidental finding. I remember one case where a MRI or CT of the head spotted a thyroid issue. I think it said something like "suspicious nodule on thyroid" under incidental findings. I know what that meant and I told plaintiffs counsel to tell his client to see an ENT and get an ultrasound. If you guys don't communicate your J Pouch construction with the radiologist it will become a "suspicious" incidental finding on a report. This is not what you want. This is what happened to me but only because the tech didn't communicate to the radiologist what I asked her to, or she did and he didn't pay attention. Speak directly with the radiologist. More direct communication is always better.

@ElmerFudd posted:

I usually have to say I have an illeal pouch for people to understand. Even when I do I still sometimes get asked about having an ostomy.

Years back (2007, I think), I went to the ER due to a blockage, and the triage nurse straight-face told me, “You can’t live without a colon.” I said, “Well that’s funny, because here I am.” Eventually another nurse, who was a floater and had been with me after surgery, came out and apologized and said the triage nurse was pretty fresh out of school.

HAHAHAA! That is funny!

@CTBarrister posted:

With any radiology testing it's really, really important to communicate well on the J Pouch for reasons mentioned by kta and myself as well in my prior post.

I read MRI reports for a living and I occasionally see the radiologist reporting on an incidental finding. I remember one case where a MRI or CT of the head spotted a thyroid issue. I think it said something like "suspicious nodule on thyroid" under incidental findings. I know what that meant and I told plaintiffs counsel to tell his client to see an ENT and get an ultrasound. If you guys don't communicate your J Pouch construction with the radiologist it will become a "suspicious" incidental finding on a report. This is not what you want. This is what happened to me but only because the tech didn't communicate to the radiologist what I asked her to, or she did and he didn't pay attention. Speak directly with the radiologist. More direct communication is always better.

WOW! That is great advice! I need to keep that in mind. I just do not see how a radiologist would see a missing colon as a missing uterus?! That was crazy lol, but yeah I will be sure to keep your advice in mind, definitely!

The same thing holds true for a K pouch or BCIR, procedures that have a surgically created internal pouch and no external bag.  If the radiologist is not informed of this pouch, it can easily be identified as a bowel obstruction.  Continent ileostomies are not nearly as well known by medical providers as are conventional ileostomies and J pouches.

@BillV posted:

The same thing holds true for a K pouch or BCIR, procedures that have a surgically created internal pouch and no external bag.  If the radiologist is not informed of this pouch, it can easily be identified as a bowel obstruction.  Continent ileostomies are not nearly as well known by medical providers as are conventional ileostomies and J pouches.

 

Yeah, you would think doctors would be educated on that stuff. 

@Former Member posted:

Yeah, you would think doctors would be educated on that stuff. 

Radiologists are NOT educated on this stuff because it's not a normal part of the human anatomy. They are educated on human anatomy and not artificial man made structures that may be created within the body.

That being said, most radiologists who do cervical and lumbar MRIs do recognize surgical changes and sometimes comment on the surgical procedure which is evidenced by the changes. Such comments are often helpful to me.

Radiologists need a proper medical and surgical history to do their best work. Failing to inform them of a J-pouch makes errors likely, even if they are extremely knowledgeable and well-trained.

@CTBarrister posted:

Radiologists are NOT educated on this stuff because it's not a normal part of the human anatomy. They are educated on human anatomy and not artificial man made structures that may be created within the body.

That being said, most radiologists who do cervical and lumbar MRIs do recognize surgical changes and sometimes comment on the surgical procedure which is evidenced by the changes. Such comments are often helpful to me.

That totally makes sense! Look at you being all knowledgeable lol

@Scott F posted:

Radiologists need a proper medical and surgical history to do their best work. Failing to inform them of a J-pouch makes errors likely, even if they are extremely knowledgeable and well-trained.

Yeah, I definitely can relate to that! They thought  my uterus was gone lol, which I thought was totally funny! I definitely need to start giving a heads up about my pouchy