Full thickness biopsy.

• By KE
• Posted March 10, 2008 at 2:34 pm

This is a really difficult one. I have had full thickness biopsies of my small and large intestine. I suppose it might help if I list the pros and cons for you and then you will be in a better position to make the necessary decisions.
Pros:

It may be beneficial for Ruby to have a concrete diagnosis. One of the worst things about having these complex and little known diseases is that in the absence of proven pathology certain doctors refuse to accept their existence. I was one of the first in the UK to be diagnosed with CIPO and as a patient I went through hell because I was originally told that there was nothing wrong. Some doctors still refuse to accept that this condition exists. Its management is very expensive and therefore it may not be long before insurance companies try to wheedle out of their responsibilities. The DOH in Britain have refused to accept that this condition exists so that they do not have to foot the bill for care of CIPO patients. However the incidence of the disease is increasing markedly so I think that they will be forced to accept that we exist very soon.
Full thickness biopsies give a lot of useful information which includes vital markers such as, the presence of gut wall inflammation, disease of the muscle and neurological disease. These different diagnoses require slightly different management.
Your medical team might use the biopsies in a research program that identifies the problem and leads to treatment being available and eventually a cure for the condition.

Cons:

I think that we always have to be wary of being used a human guinea pig. Your medical team may be doing a research program and want these samples to add to their data.
The invasive procedure itself may lead to complications.

The procedure is done by keyhole surgery and is very invasive. I would have to be sure that the surgeon doing the biopsy was massively competent in this specialist area. I was lucky enough to have one of the most eminent surgeons in Britain. I stayed in hospital for a couple of days and was pretty sore afterwards but generally things went well and I don't even have a scar now.
As yet there seems to be no way of treating this disease so you might say, why put little Ruby through such trauma if they are going to say, 'sorry Ruby's condition is untreatable.'

These are the decisions you must make. Never ever forget that little Ruby's quality of life is the over riding factor in all this.
I had duodenal manometry before biopsy. This will certainly add to the suspicion that Ruby has CIPO but in isolation I don't think that it is conclusive. I have to admit that the procedure was vile and given the choice I would prefer surgery, but perhaps I am just a coward.

Kind regards,

K.

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• By deb1
• Posted March 11, 2008 at 9:53 am

I don't know much about CIPO. However, I believe it's very real and thought you might be interested in reading about this story. This is where I first heard of it. http://dsc.discovery.com/fansites/surgery/bios/six-organ/gretchen.html

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