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Has anyone had any experience with defacography tests? I went to the GI doc today and talked to him about my incontinence of bladder and bowel. I have been to urology, neurology, and had some GI tests already. I have had colonoscopy and endoscopy and some other miscellaneous tests. My doc is wondering about my bowel incon. He had me do a test where I had to take this pill and then go get an xray of my GI tract. I have to go back in 5 days to see if the pill passed. They will take another xray on Friday. If this test comes back positive and the pill is still there, they want me to do a defacography test. Is anyone familiar with that? I don't want to do it. I know exactly what the test is. They have to insert this dye into my bottom and then take pictures. Then I have to go and excrete it in their computerized toilet. I'd rather not. This is a personal matter and I'm embarassed. I know they are medical people and they see it all the time, but I'm still embarassed. The doc said if the xray test is negative, then there is no point in doing the defacography test. He truly believes me incon issues are related to my meds but he just wants to check this one thing out because he's a doctor and thats what he does. Investigates things. Does anyone have any experience with this stuff? I just don't know. I done enough tests already. I've had cameras check me out everywhere. I don't need any more.

Hi Don

You sound like me when I went through GI and urinary testing I feel for you.
The tests are bad enough but the humiliation is even worse but like you said they see it all the time. Knowing that it still doesn’t help I still get embarrassed.

Defacography tests is one I can’t tell you if I had it or not I never heard it called that.
I did look it up on the net and it looks like a Barium Enema test and I had several of them preformed over the years. My last Barium Enema test was preformed about five years ago.
During that test my bowels went into quite violent spasms the doctor that preformed the test said he never saw that before and was glad he got it on film.

2lyle

Don--

Sorry to say I have never heard of this test, but I can empathize. Being diabetic, and then with all these other issues, I often feel like a pin cushion under a microscope. They want to poke me to get every kind of fluid and videotape it. (I know that is an exaggeration, but it feels that way sometimes.)

But you can always say no. And you can ask if there are other ways of getting the same data. A few years ago I had a doctor that decided to prescribe a whole bunch of things for me without telling me side effects, what the purpose was etc. After a bad reaction to one of the medications that about hospitalized me, I started pushing back. I tell my doctors if they can't explain the need of the medicine or test or procedure to me, along with the side effects, I won't take it. I had one doctor that told me that she knew better than me and she didn't have to answer to me. I told her that me and my money (and my insurance company's money) wouldn't be back. (I recently saw her at a restaurant and she was more humble and apologetic.) I had one doctor that leveled with me and said "This is kind of an experiment to see what works," and I respect him more because he decided to partner with me instead of playing god.

I would push back. I would ask if there are less embarrassing, invasive, or other tests that could measure the same thing. If the doctor has the least bit of empathy they should understand. If they don't I say it is time to find someone who does.

These tests show how the anal sphincters function during defacation. Not something I want examined. I have had camera's in every hole in my body. I'm just tired. They have evaluated everything about me. This doctor is nice and he says the test can determine pelvic floor dysfunction. . He told me what it was for. He also told me I didn't have to have it if I've had enough, which I have! I did a Sitz marker test yesterday. That was easy. It measured my systems motility. Mainly looking for constipation, which I don't have. I have chronic diarrhea. Certain foods go through my system wicked fast. I agreed to that test because it was so simple and noninvasive. Anyway, the doctor said all I have to do is say "when" and he will stop the tests. Its up to me.

Don--

I have recently been seeing a massage therapist that specializes in pelvic issues. This guy is great. My pelvis muscles were incredibly tight probably due to some surgery and injury I had in my groin several years ago. We have been working now for about 2 months, and this last week I came home from work with a dry diaper two days. That is unheard of for me. I also woke up dry 3 nights last week. I may never get out of diapers completely but I have a hope that I may have more control.

I know your situation is different than mine but if you are interested I could send you some books he has recommended to me. Perhaps he is aware of people in your area that have a specialty like his. Let me know if you think I can help.

The cause of my icon is from nerve damage so I'm guess that those tests that you mention are only for someone like your self that has other issues that are causing your incon problem.

Johnstone,
The tests are for when the causes of your incon is unidentified. The cause of my incon is more than likely a cross between a neuropathy w/ sensory problems dealing with my bowel and bladder and a side effect of my psych meds. I am hypersensitive to psychiatric medication and the Lithium that I take is linked to bladder and bowel incon and chronic diarrhea. Its pretty concrete but some doctors like to see if its something they can fix, such as weak pelvic floor muscles. I have had urodynamic studies with cystometrogram and surely the urologist (who diagnosed incon secondary to my psych meds) would have said something about my pelvic floor muscles.

I had the second half of the sit marker test today. All the markers cleared my body except one in my lower colon. Thats pretty normal. I see my gastroenterologist on Tuesday the 10th of April. So I'll see if he has any more ideas besides the defacography test that I'm not doing.

For future knowledge, a diaper and plastic pants will show up on Xray according to the Xray technician. A dry diaper is fine, but wet is no good. They can see the gel of the padding in the diaper on film. I let them know I was incon and wearing a brief with plastic pants before they did the test. They asked to see what I was wearing. They said the diaper could stay but the plasstic pants had to be pulled down. The vinyl was too thick. The Xray was of my digestive system. The techs were really understanding and supportive of my condition. I tried to be as polite as possible. They made the test easy and I wasn't embarassed.

I've never had any of the tests you had done, but the good news is is appears you don't have any stomach issues causing your bowel incon problem. I have to think that means the sourse of your incon problem is some how nerve related. For those of us with spinal cord damage it is pretty easy for the doc's to figure out what nerves have been damaged and the extend of the injury and the effects it will have over time.

What if anything are your plans to ID the exact cause of your bowel incontinence?

Johnstone,

There will probably be no more tests. I've had multiple tests to determine the cause of my GI distress and incontinence. All have been normal. I don't know what else there is. I will talk to my doctor next week and see what he recommends. I'm not doing the defacography test though. My other doctor is pretty sure my medications are causing my incon issues. Diarrhea, Bladder and bowel incontinence are known side effects of Lithium as reported by the FDA in the clinical trials. No other cause has been found and I've had dozens of tests.