Awful kidney pain/lifestyle changes, cures?

[Fanfeckintastic]

I know this is the completely wrong forum and I'm sorry but I put a post in medical a while ago and got no replies.

Does anyone know anything about kidneys and can please help. I've had chronic pain in my left kidney after am operation as a chid, a recent scan showed that it's distended (swollen as far as I know) and I need to see a specialist which will take about a year as I'm in Ireland and haven't got the money to go private. The doctor assures me it's nothing serious though so that's something.

I'm in agony this evening and at a loss of what to do, doctors etc are pointless as everything counts on seeing this specialist in a year+ but can anyone tell me is there anything I can do lifestyle wise other than the obvious to keep the pain at bay?

I'm not usually a fizzy drink drinker but had two cans of Tesco diet drink this evening and I feel like the pain had to have come from that. But it can often happen if I've simply drank too much water too, or too little!

Yes that's it then! A UPJ obstruction. And lap pyeloplasty is common as a paediatric op (well not common but when it's done, I believe it's often on children).

Although yours will likely not have been laparoscopic as that technique (the keyhole version) was only pioneered recently. Do you have one scar a few inches long, or three quite small scars about 0.5 inches long? The latter is what I have.

I'm a medical freak as I'm asymptomatic so I experience no or very little pain. So they didn't pick my obstruction up till I was an adult as I was never in pain! However i did start getting some pain, ironically after my op. I made some big lifestyle changes which coincided with a reduction in the pain. My consultant is sceptical that they made a direct difference but tbh surgeons don't always know masses about nutrition so, fwiw...

I cut down on carbs, upped lean proteins and lost a bunch of weight. I wasn't fat before but I slimmed down to an athletic build and that helped. I only allowed myself one caffeinated drink a day and never diet coke, only real coffee. Drank good amounts of water and herbal tea but not huge amounts as that would put pressure on. No salt. Reduced convenience foods. Ate less at night and exercised more. Also took up yoga as I personally find that if I have a tight back the kidney pain seems to "interact" with that somehow and get worse.

That's about it really but I felt magic also did a nutrition plan with a registered dietitian as there are some foods you should avoid.

Now pg and can only eat cereal so has all gone to hell

The last thing I'd say is, having had hydronephrosis for a while, the tissue of the kidney is permanently distended. Like, it doesn't just snap back to regular size after being stretched. People always goggle at my right kidney on scans and call in all available technicians to have a look, but it's normal for me! So not necessarily a bad sign in itself.

I had a pyeloplasty for a UPJ obstruction too, and you're right, the pain is horrible, non specialist doctors don't seem to know much, and even the internet's not very helpful.
I had pain for a year before my operation , thankfully very seldom since. What I found helped was not too much liquid of any kind (ignoring everyone who told me to drink more when they heard I had a kidney problem) as that made the swelling worse. I gave up coffee and beer completely, limited proper tea, and limited other alcohol. Again small volumes only, so a few shots and no mixer if I wanted to get drunk! And a strong painkiller, voltarol, from my gp for when the pain got really bad (like when I ignored my own beer ban...).
Mine are permanently distended too, and I also find exercise helps!

We should start a club

I take tramadol on the rare occasions I get pain but codeine/ co-codamol makes me throw up :(

I have similar problems & live with CKD 3 & have managed to keep that at by for 25 years - ironically have an infection now though, so bare with me as I'm not well enough to go through & follow the whole thread.

Do you have an infection ?? - sounds probable& will need antibiotics

What I do know is…

Codiene based pain killers are fine, (metabolised in the liver)

NSAIDS (Ibruprofen etc) are very bad - avoid!

Paracetamol is okay, but not great as metabolised in both, but fine in short runs.

Eat a CLEAN diet, avoid additives of all kinds & cook from scratch - this can make a HUGE difference - after a very bad time, lots of hospital stays, this kept me out of hospital for YEARS

Avoid alcohol

drink plenty of cranberry juice - this will keep infections at bay

drink plenty of fluid full stop - real coffee is okay in moderation

How is your blood pressure ?? - this needs to be under control - Losartan Pottasium is a BP drug that lowers BP AND protects kidneys - ask for this & only this if your BP is high

Take magnesium, it will help your body deal with pain & my Kidney specialist says its fine & you cant OD on it

If it gets worse & no joy with your GP - go to A&E

Good Luck