Weird pelvic pain from PD catheter

[kickingandscreaming]

I haven't even started PD yet, but started having pelvic twinges deep in the pelvis where I'm sure the tail of the catheter hangs out.  It just started today with no provocation.  It reminds me of the kind of pinching, twinging pain I had when having an IUD (inter-uterine device for birth control) inserted about 100 years ago.

Last week when I was being power flushed it also happened (much stronger) when being drained.  It was so bothersome that my nurse left 300 ml in rather than sucking it all out.  I'm very concerned about this as PD is my last resort.  If I can't get it to work, then I refuse to spend my life on in-center which is what I'm doing now while waiting for my cath to get its act together.  It's either PD or death.  I'm not being melodramatic. That's just all the options I have.  I have a chest cath at the moment and no fistula and I'm needle phobic and have no care partner.  It's PD or die.  I'm scared about this choice.

Some background:  Since getting surgery to "fix" the cath with all the drugs, and since starting Renvela I have been constipated twice. Once for a week and this bout for 3-4 days.  I am taking every constipation medication under the heavens, but I can't seem to hit my stride in a way that insures that I can succeed at PD.  And now there's this.

[Charlie B53]

It is not uncommon for some  to 'feel' the cath 'rub' against the lining, the peritoneal membrane.  Some are far more sensitive than others.  During full drains I sometimes feel the cath 'suck' up against the wall, causing a strange ache deep within my abs just above the pelvic bone.  Usually this begins to ease as soon as the fill cycle begins.  Sorta like the strength of the flow sometimes causes the end of the cath the move away from the wall.  Does this make sense?

My pain perceptions are somewhat altered as I am taking the max does of tramadol and also wear a 50mc/gm/hr of fentenyal so I do not 'feel'  what can be very bothersome to otherss.

Leaving a small amount of PD fluid in so as to 'cushion' the cath may be a great compromise to ease that irritation.

If these pains do not ease then perhaps you should talk to your Nepth about the possibility of using a synthetic narcotic.  In my experience, I do not get any of the more common side effects like the fuzziness, drugged feeling, constipation, that I had using the more traditional narco drugs.  The narcs never really did much for the pain, just made it easier not to care about anything so much.  The synthetics actually do ease the pain a noticeable amount.

While beans are a good protein source, and contain a large amount of fiber, the bean fiber can still dry and constipate if not well blended with tomatos. A good chili is like a small bowl of Heaven.  Somewhere within IHD you will find a recipe for Zach's Chili.  Most everyone LIKES it!

As for your constipation, less white flour, in ANY form, less cheese, in any form, more fibrous vegetables, more fruit. ANY breads need to be whole grain, like this course breads that have recognizable pieces of grains, large fibrous particles.  These bulk up and retain water, softening the stool.  Studies have also shown these large fibrous particles actually 'scrape' the lining of the intestine and colon, very helpful in preventing unnatural growths.   At my 'scope', (not a pleasant experience)(I think, I was drugged) My wife was told that I'm a Perfect A-hole, that I needn't come back for at least another 10 years.

[Simon Dog]

ANY breads need to be whole grain

My renal dietician tells me to avoid whole grain bread and eat only the white stuff to keep phosphorous down.

My cardiologist tells me to avoid white bread and eat only the whole grain stuff.

[Charlie B53]

The renal Dietitian and the Cardiologist are BOTH right, and both wrong.  Just a little bit.

The KEY is, ALL things in MODERATION.

Knowing your labs, your phosphorous levels, and how much is in excessive amounts in some foods, then limiting those foods, keeping well within that 'moderation' thing, can go a long way to ensure your labs stay within the boundaries set.

I don't usually take binders and my phosphorous stays mid-range.  It helps that I am on PD , still have maybe 5% kidney function and do not yet have any hard limits on diet.  BUT... when I do know that the bean pot is cooking that I will have to take a couple of binders with each bowl, just to be SURE that my numbers stay well within that mid-range.

I don't eat bread daily, but a couple of times a week I will splurge and make a sandwich.  And when I do I use that whole wheat with recognizable pieces of 11 or 17 grains.  That short wide loaf that feels like it weights almost three pounds.  So a real sandwich with LOTS of lettuce, a few slices of tomato, plus whatever lean (maybe) meat I select, (hot peppered head-cheese), and a slice of pepper-jack cheese, Real course mustard on both sides,  I may not feel like eating again for at least nine or ten hours.

By the time that second slice of bread goes on it looks like I'm trying to sandwich a salad.  I just figure that a guy HAS TO have his veggies EVERY day, how ever he gets them is O.K..  And leaving out the salad dressing is even better in helping to keep my weight down.  I've pretty much given up the Miricle Whip by replacing it with spicy brown mustard.   Tasty!

I don't buy that 11 or 17 grain very often, maybe only a couple times a year.  Any more I usually get that 35 cal stuff.  It really isn't bad.  I wish I knew how they manage to make that bread with only half the calories of regular bread.  It sure doesn't taste or feel like anything is missing.  And I don't feel so stuffed as the loaves are normal width, not that really wide stuff which makes my sandwiches into a meal.

You gotta realize that I have always been a decent size guy.  6 foot 220 lb line-backer, throughout High School, Army, College.  Worked as a mechanic on heavy equipmtnt, trucks before semi-retiring and working boats for many many years.  I ate, and burned LOTS of calories.  Many days in the neighborhood of 4K give or take a few.  I didn't begin gaining weight until my kidneys started failing and my strength started waning.  I gained about 100 lbs in 10 years until I started PD and my appitite then dropped like a rock. My first 2 years on PD I've lost that 100 lbs, but I've softened so much I don't doubt that I could lose another 40.  It may take me another 2 years, but in time, it will happen.  Slowly but surely.

The trick is learning which things to cut back a little.  NOT cut out, just limit some.  And give it time.

Sorry for the long post, I tend to get carried away far too easily.

Happy New Year!

Take Care,

Charlie B

[kickingandscreaming]

Thank you both for commenting.  I'm hoping that PD works for me.  Today I had a decent flush with no pain, so here's hoping.  I would LOVE to eat lots of vegetables as I was a vegetarian for 35 years.  But I am growing paranoid about them as I see my potassium out of range while not eating very much of anything.  Some days, like yesterday, I could have eaten a mountain of food after Hemo.  I was absolutely ravenous like I had a hollow leg or something.  Finally, I just had to break down and have some break and a small chunk of Brie ( one of the lowest phosph cheeses) and a half of an apple and finally that quieted me down.  Never felt that before after D.  I love salads, but they don't really fill me up for long.

[Charlie B53]

I used to eat a substantial amount of groceries at every meal.  Back when I was working that wasn't a problem as I burnt calories like an out of control furnace.

Medially forced to quit work because of declining health, I began to put on weight. Like another 889 pounds over the next 15 years.

That all changed once I started PD.  Having two liters of fluid in me constantly, day and night, that added pressure, which I otherwise do not feel at all, presses on my stomach enough that I cannot eat but a small handful of food.  Weight began to fall off.  In two years I've lost 100 pounds.

So try not to worry much about your current hunger, I'm sure that will change once you start PD.  If you are heavy, you may begin to lose until youo reach a 'balance'.  That may take some time, but so what?

Like I've said before,  All Things in Moderation.  Pretty much eat what you want, just not too much of any one thing.  Your dietician will help you learn which foods are higher in potassium and phosphorus and should be limited.  Not a problem.

Take Care,
Charlie B53
Mod