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You would think...

airborne72's picture
Posts: 281
Joined: Sep 2012

I have been awaiting a colonoscopy due to the questionable observations from a recent CT scan.  Getting it scheduled has been a priority for me because I am suppose to have my ostomy take down surgery on 26 March.  If I have "issues" in my rectum then it stands to reason that I should not prematurely take down my ostomy until my "issues" have been explored.  However, my thought process and that of the local medical community has not matched.

After a week of literally pushing the rope to get my colonoscopy scheduled (at my convenience if at all possible) I got that phone call late this morning asking if I could have the procedure tomorrow morning.  I said yes, but then spent at least 15 minutes explaining to the clinic employee why I need a colonoscopy.  After that conversation it got more convoluted.

I drove to the clinic and got the prep kit.  After that I went to the out-patient surgery center to check in.  While at that desk I once again explained my situation and asked if I really needed to do the traditional colonoscopy prep since I have an ileostomy.  They summoned the head nurse and she could not answer the question but she said that she would find out.  About four hours later I received a phone call from the GI doctor and he asked why I needed a colonoscopy.  I explained it all once again (CT scan, unusual results, colonoscopy ordered by oncologist) and I made sure that he understood that I have an ileostomy and that I had been advised to do the traditional prep.  He finally agreed that I do not need to do the prep since anything that goes down my throat will come out into my bag - none of it will pass on to my large intestines which is where the scope will occur.

Someone please tell me if this is too difficult to understand.  My intestinal tract has been severed since 10 October.  Nothing has passed into my large intestines since then.  Other than dust and memories, there is nothing in my rectum, so why do so many in the medical community think that I need a traditional colonoscopy prep?  Their collective lack of knowledge about this is unnerving.  It also underscores the importance of patient advocacy - by the patient!

Hopefully I will have some good news this time tomorrow and I can stop waiting/worrying.


Canadian Sandy's picture
Canadian Sandy
Posts: 700
Joined: Jul 2016

I feel the same way Jim. My last ct scan I had to correct the radiologist report as he had written down left kidney with the cyst when it’s really the right kidney. Went for pre op today and made sure everyone knows it’s the right kidney then they corrected the error. I’ve wondered about many things along my journey. Good luck to you.


Trubrit's picture
Posts: 5427
Joined: Jan 2013

That is horrifying! 

Have you actually seen the CT scan? I would ask to see it. I would ask for them to point out the cyst. Point out the kidney. Point out that the view is from the front and that it is actually on the right side. 

I am so glad that you are on top of things. 

Wow! Scary!


Canadian Sandy's picture
Canadian Sandy
Posts: 700
Joined: Jul 2016

No I haven’t seen the ct scan tru. The complex cyst has been there since the colon diagnosis in 2016. The left kidney now has a cyst also which their no worried about. My surgeon phoned thr radiologist and got it all corrected. Meanwhile I was in the diagnostic dept of hospital at same time showing them my scan report. They got quite excited!  haha I will be REMINDING them before I go under. For sure!!  lol


Posts: 110
Joined: Jan 2018

Hoping you receive good news! The patient definitely has to be aware and advocate for themselveS. When DH went to check in for his liver ablation the hospital had him scheduled for a colonoscopY. 

Ruthmomto4's picture
Posts: 689
Joined: May 2013

ss you said, but common sense and actually reading reports and thinking instead of just doing everything the same for everyone is the problem. People get totally complacent and used to doing things one way and never pay attention to the details at all anymore. 

I hope everything goes smoithly from here. 

OzarkGal's picture
Posts: 41
Joined: Oct 2017

I will be having a colonoscopy the day before surgery to remove colon tumor and reverse colostomy.  When I met with the colon surgeon, he drew me a picture of a colon and scribbled in a round circle and said "this is your tumor.  We will cut here and here [around the tumor]."  I asked, "where is this in relation to my colostomy?"  He said, "Oh - you have a colostomy?" and lifted my shirt.  He said, "then we will cut here and here [around the tumor and the colostomy]."   LOL.  It would have been nice if he could have reviewed my records.  My insurance company was probably charged $400 for that sketch of a colon.

Anyways I have to do the bowel prep.  Any tips on doing this with an ostomy?

HBlack's picture
Posts: 3
Joined: Mar 2018

Just became a member here, I hope all goes well for each of you. I feel like I learn a lot just from your experiences so Thank you.  Helen

Trubrit's picture
Posts: 5427
Joined: Jan 2013

This whole thread is shocking.

Do they not read peoples records? I can understand nurses not knowing everything, but surgeons, GI specialist, Oncologist, they need to to know. 

You Jim, Canadian Sandy and Ozarkgal, all need applauding for standing up to these professionaly.  I know too many, who think that their health care providers, no matter the speciality, are all knowing and all caring. Some are, but allot aren't. 

Hugs to all of you who are about to have procedures, surgeries, or just plain visits with your Dr's. 


BRHMichigan's picture
Posts: 368
Joined: Jul 2017

What a horror story. The only defense I have for the docs is that your cancer team needs to have great communication. My surgeon and newer oncologist take the time in updating electronic health data during my appointments . I have appreciated that so much. 

I am due for a colonoscopy on May 10. I have a permanent colostomy. Do I still need this? ugh. I will ask, and I appreciate you promoting this discussion. 

Best wishes that your experience improves this week. I hope you have conquered this beast for good! - - Beth

SandiaBuddy's picture
Posts: 1173
Joined: Apr 2017


Some people on the board seem to have the best of care and the best of luck.  Unfortunately, my experience is on par with yours--one needs to be constantly advocating and informing the medical community to get competent care.  I really don't think there is anything we can do systemically to change it at this point in time, only to stay alert and realize that the person who cares the most about your health is you.

JanJan63's picture
Posts: 2482
Joined: Sep 2014

Wow. We put our lives in the hands of these people. I would think that they'd be a little more on the ball. That's disturbing.

Here's a bit of a funny story. When I was still in the coma after the PE they decided to do a colonoscopy. My daughter was there when a nurse decided to do the prep. I have an illeostomy. My daughter tried to tell her that she shouldn't be doing that but was ignored. So the nurse was pumping the prep into my feeding tube and just kept going until finally my bag burst open. She had a huge mess to clean up and my daughter thought it was hilarious.


BRHMichigan's picture
Posts: 368
Joined: Jul 2017

Jan, That is just crazy! Arrogance will do that. Praying you have a good day soon! -Beth

Mikenh's picture
Posts: 779
Joined: Oct 2017

I had not even thought of this - thanks for bringing it up. But yes, it does make sense. There is some stuff that can go into the large intestine if there's pooling around the stoma but it's usually small amounts of stuff.

Lily Flower's picture
Lily Flower
Posts: 254
Joined: Jul 2017

It's so sad to see there's no communication amongst the medical team. Patients put their lives in their hands at their mercy. Some people become doctors to make big money, no compassions, no empathies. Very disguesting! Good that you stay on top of your things. Let them know you're their patient, Jim, not just another number. 

ThomasH's picture
Posts: 104
Joined: Jun 2016

I always think about George whenever I see something like this, and I think he was right on the money when he said: (and I paraphrase badly)

"If you look at all the people in this profession, statistically, half of them graduated in the bottom of their class"

They really aren't hard to spot.


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