Kidney stones and surgery for FAP

Hello again everyone, I hope your all well. 

I've very recently been hospitalised with a sudden acute case of Kidney Stones, according to my hospital it's likely been caused by years of slight but chronic dehydration caused by having my large intestines removed in 1994 and probably not drinking correctly ever since, too much tea, coffee and plain water. I've been given a target of 2.5 litres if drink a day, limiting caffeine, sugary and fizzy drinks. It's a revelation, I'm passing urine far better, having less bowel movements (down to 5 or 6), and no longer having almost perminent diarrhea. Hopefully it will mean no repeat of the agony of the last few weeks. Has anyone else had experience of this sort of problems or other issues to look out for post surgery.

The bad news about all this I've had to cancel J pouch surgery due next month, haven't been ablestablished to attend all the pre operation appointments and need to get the all clear from my urologist that it was definitely my drinking and not another issue causing the kidney stones and that I've passed all of them before major bowel surgery. It's a bit of a nightmare and has got me thinking of which type of surgery to choose, do I just go straight to a bag for good, try the j pouch hoping that I don't get further dehydration problems due to loosing more small intestines to the pouch and what is a bcir I keep hearing about, is it the too good to be true compremise between bowel control and dignity?

Nothing is ever simple with the surgeries that are caused by FAP, we all have different experiences to share.

Original Post

Evan, you may wish to refer back to my response to your prior post.  There really is not much difference between a J pouch, end ileostomy and BCIR (or similar K pouch) as far as fluid absorption is concerned.  With each of those procedures, it is essential to drink additional fluids to compensate for fluids otherwise absorbed by the colon.  My personal choice would be to opt for the J pouch, which has a high success rate.  If you select a different option and your bottom is sewn closed, you will never be able to get a J pouch later.  If the J pouch does not produce satisfactory results, you can go for an ileostomy, K pouch or BCIR.  There will still be sufficient small intestine for any of those options.

I have had a BCIR for 4 years with excellent results.  With this procedure, the surgeon creates an internal pouch and valve using a short section of your intestine.  The pouch is emptied at your convenience 4-5 times a day using a small silicone catheter.  There is no external bag required.  This procedure is now being performed in London by Dr. Ed Westcott.  You can view a lot of information plus a video presentation at www.bcir.com.

Bill

Evan, 

Kidney stones seem to be a major problem for many of us...I had my first bout about 20+yrs ago...thought that I was dying...Didn't know that that sort of pain existed.

The first thing that the ER doc asked me was where I lived.  Then he told me that I was in a hard water district and to stop drinking or cooking with strait tap water and to start filtering it with a Brita sort of system. Immediately.

He also told me to stop drinking mineral water (duh) due to the mineral content (double duh)...strictly filtered water, juices or other fluids especially with lemon juice in it (something about the acid/PH balance in the blood)...

I drink a couple of glasses of homemade, sugarfree lemonade daily, lots of water and coffee or herb teas, no sodas except during parties or when out.

It helps.

All pouchers and colonless people will have difficulty with water absorption, even 35+ yrs later.

I go for the 'easiest surgery' first meaning the lowest on the long-term side effect scale...j pouches are extremely viable and an excellent choice. Most people do extremely well and never come here to complain...those that have no problems are very busy living their lives...so do not take this site as a reference point...you are seeing a skewed point of view.

By the way, do not neglect your salt intake...you need salt.

Sharon

 

 

Thanks for the heads up on water, Sharon.  We live in the northwoods of Wisconsin and get our water from a well that is 825 feet deep in bedrock (long story).  I guess that I have been lucky for the 7 years we have been here and drinking the water that has a distinct mineral taste that I hardly notice anymore.  Although I had a kidney stone attack when living in Milwaukee, I have had no problems since, but do drink quite a bit of water.  Undoubtedly, some people are more susceptible to kidney stones than others.

Bill

I wouldn't have believed it if they hadn't told me about it and the fact that he sort of guessed which neighborhood that I lived in was freaky...they have statistics according to the neighborhood...

Spring water is fine, even if it has a minerally smell it could just be iron, which is pretty common in Well water and spring water depending on which rock formations it flows through...

I have been filtering since then and have a built-in filter in my fridge too..ditto for hubby and what he drinks...

I have had a couple of close calls...I used to wake up nightly to empty out my pouch and would drink strait from the tap...gulping gallons...after about 3 months I started to feel the tell-tale signs of lower back aching and cramping...Stopped that quickly.

The lemon is useful and is great for bone density too...

Sharon

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