the pain could be many things but I don't know if belly contracting is associated with PKD, sounds more intestinal to me. I don't claim to know that much about it since I didn't have much pain with my PKD and when I did it was usually associated with an infection.
if your creatinine is 1.4 that doesn't sound bad, up to 1.5 is normal range. I don't know how to interpret GFR.
controlling potassium (K) can be tough, do you know what your numbers are? if you aren't doing it already, ask for a copy of your labs so you can learn what they mean.
your doctor should have a list of foods and their potassium count, generally avoid potatoes, tomatoes, many of the yummier fruits such as peaches, nectarines, mangoes, apricots, papaya. apples and grapes are lower in K. a lot of the healthiest veggies are high in K but cabbage is not. not everbody likes it but it can be brushed with oil and grilled, thats good. salads like cole slaw are good.
one of the real bummer things about kidney disease is that the healthier foods are the ones that need to be avoided. white foods are generally lower in potassium and phosphorous, white bread, white rice - but have much less nutrition. its a real challenge to maintain optimum health while protecting yourself against too much potassium.
for anyone who doesn't know, potassium doesn't harm your kidneys and doesn't promote cyst growth, what happens if your kidneys can't process it properly is it can cause your heart to stop, simple as that. too low potassium is also dangerous and some kidney patients have that problem. its a real challenge to get enough but not overdo it.

OH, I was sure you would know what was wrong with me..:( Don't think it's intestinal cause I have colonoscopys done all the time, colon cancer in the family you know, can't just have one thing wrong, has to be a 2 or 3. I guess it's not anything serious because I've had it for so long. About the GFR, 38 is stage 3 renal failure, I've been here for quite some time, a year or more. I do have a copy of my labs, I always get them. On it, it says normal range for creatinine is from 0.4 to 1.1, thats this lab and I think they all pretty much vary. Potassium was very bad 5.1, normal range is from 3.6 to 5.1 I've tried my best to get it down, didn't work so now he's shipped me off to a renal dietician. I'll probably regret this and so will my husband. No more good broccoli, brussel sprouts, all that good stuff, but I know it has to be done. Doesn't make sense does it, that good things are bad and bad things are good, go figure. BTW, the tummy doesn't get hard, just the area that hurts, as if something is trying to strangle me, oh I can't even think about it. thanks again.

In regards to potassium, when you got to a renal dietician you will find out exactly how much you can have in a day. Of course limiting hight potassium foods will be advisable but don't forget that if you eat too much of a low potassium food you can still contribute to a high potassium count. Try limiting portion sizes of foods containing the most potassium. You can go to the USDA nutrient food data base to find out the counts for different foods and drinks. Also consider that some medications will contribute to a high potassium; ask your doctor if you're on any of those meds.. I'm wondering. If you have any new pains, such as chest, arm, jaw pain ect. go to the emergency room. I would limit the potassium just a little so that it doesn't go any higher between now and your appt. with the dietician. Make sure it's a renal dietician; my doc sent me to one also but she turned out to not be a renal dietician and all she knew about was a diabetic renal diet, and not even much about that. Lin.

Norma
Colonoscopies only look at the colon; they don't look at the 25+ feet of small intestines that sit between your stomach and colon. That said, have you tried keeping a pain diary to track what may be the trigger for your pain? I find this very helpful for all types of pains and other symptoms, and use it to keep track of diet, exercise, fluid intake, medications, sleep, stress, etc. In my case, I get severe migraines and by keeping a headache diary I've been able to identify my primary migraine triggers, barometric pressure changes (which I can do nothing about) and lack of sleep and increased stress, which I can try to control. You may be able to identify a trigger for your stomach pain as well.

The other options is to talk with your GP about the pain and see what options are available to idenitify and treat the problem. It could be something very simple like a food sensitivity (as much as I love milk, my innards do not like it and generally let me know with serious pain). Or something a bit more serious. Your GP can order some quick and easy tests to identify the cause and treat it, which will ease your mind and the pain.

As for your creatinine, 1.4 may be in the "normal" range for your lab, but at 67, it's not going to give you a normal GFR when plugged into an equation that includes age as a part of the equation. Kidneys do age over time and a "little old lady" with a creatinine of 1.1 can be in renal failure whereas a big strapping young man with a creatinine of 1.5 can have perfectly normal kidney function. Of course we all know you're not a little old lady; you're active spry and full of vigor and vim! But age is a factor in the equation nonetheless, so it can make things look worse than they really are. I've been in stage 3 for nearly 20 years and my kidneys are just now starting a slow downward slide (as compared to everyone else in my family with PKD who was either dead or long since on dialysis at my age of 48).

5.1 for potassium is right on the edge of high at my lab, but my doctor wouldnt' be panicking, just telling me to cut down on the potassium rich foods (this link might help: http://www.kidney.org/atoz/pdf/nutri_chronic.pdf). To get it lower, all I usually need to do is cut out fruit juice (especially orange juice, which I absolutely love) and cut back severely on my fresh tomato consumption, which generally skyrockets during late summer/early fall. While I may preach lots of fruits and veggies for those who can eat them, I'm not very good at eating them myself (I simply don't have room in my stomach for much in the way of food). In my case I fluctuate between high and normal potassium levels so I just need to watch overdoing the orange juice (my diet is almost exclusively fluids due to stomach compression anyhow).

Do keep the stomach pain diary and talk with your GP if it doesn't get better.

Cheers,
Ruth

Norma,

I have had chronic pain for years that sounds very similar to what you're describing. That's how I was diagnosed with PKD. It's not in my family, so I was totally shocked to get the diagnosis. I was being treated for bursting ovarian cysts with vicodin by my OB/GYN. He had me get a CT scan when I kept complaining about the pain and that's when they found the PKD.

PKD CAN cause abdominal pain, from displacement or large cysts or other things. But is it possible that you're feeling pain from ovarian cysts? One other thing that was found during the CT was that the wall of the distal ileum (small bowel) was thickened, possibly Crohn's disease. I'm NOT AT ALL suggesting this is your problem! But when I read this in the report, I thought maybe that was the source of my pain. I went to a GI doc and he did a colonoscopy and said I was fine. Then later, when I was talking to my internist, she said, the colonoscopy doesn't even look at the small bowel! For that, you have to do the camera-down-the-throat thing, which I have not chosen to do.

For me, when I am in pain, I really couldn't care less what is causing it, and I know that's a bad patient, a bad way to look at it, but honestly, that's my thinking. It's a chronic thing, but doesn't happen all that often, maybe every two months or so and I am in bed for 24 hours on Vicodin. FOR ME, as long as I can manage it and manage my life with the vicodin, I just take it that day, and then move on.

So the source of your pain could be many different things. If you really want to discover the source, you would probably need to work with your internist to rule out things one at a time. That can be expensive, and for me, I'd rather just manage it and move on.

Best wishes to you--