Old Mike

I have questions regarding how you have gotten your rectal stump to calm down..

Mine still shows inflammation and other issues per my scope this year and the amount of mucus it makes/discharges..

I have a RVF. (sorry if this is too much info but its pertinent.) The discharge from the rectal stump goes out the RVF with the bacteria making it into my bladder and kidneys. This has caused recurrent UTIs. I've been having to resort to IV antibiotics to clear the infections and even that's a struggle anymore.

Currently I am on Estradiol cream to change the pH balance in my urinary tract. I also take cranberry supplements, and D-mannose for the recurrent UTIs. In Sept 2022 I had laser surgery on a kidney stone. They missed a 2 mm piece-left behind. But no new infections with the new supplements...but this last week A UTI showed up. CT showed there are now two stones over 3.2 mm in size.

Urologist wonders if stones are forming because even though I am not feeling signs of UTI the bacteria is still there and recurrent low grade UTI will form stones...but so will taking vitamin D. (I take 15k a day)

So if we could get the mucus to slow down we might be able to slow down kidney stone growth...

What did you use to slow yours down and what was the dosage? How did it work? How long did it take? Where do I buy it?

Any suggestions would be appreciated.

Clo

Post Edited (clo2014) : 8/3/2023 8:28:25 AM (GMT-8)

Stones not tested by the urologist that did laser surgery.

New urologist was trying to think of out of the box ways to slow mucus without surgery so more stones wouldn't develop. (I coded during last APR surgery and then went into renal failure) New urologist hoping that by slowing it we can stop some of the bacteria.... It's a possibility. The head of the urology department was there and he wants surgery...but my CRS did a modified APR and couldn't remove the very bottom portion of rectum and the anus because I coded. He now refuses to even try to fix the RVF. I've gone to a different hospital in Dallas and they said they won't try since he won't because he's one of the top CRS in Dallas...and if he can't do it then the chances of success with another doctor is low. I've resorted to going to Colorado to see some doctors up there this month....but my medical records and his recommendations will follow me. But maybe they will find something they can do. If not...then it's up to Chicago and then Mayo. I've gotta keep trying. These infections are gonna kill me. I can't fight them off too much longer ... It's harder each time. This time....I'm really sick.

I don't eat a lot of oxalate....but I believe the vitamin D is also impacting the formation of stones. We reduced it from 15 k daily down to 5. (My e level was at 53 with the 15k vitamin d daily)

What was your dosage of BHB? Where do you buy it?

Clo

I'm glad they were able to save you.

Coding is awful....it impacted my short and long term memory... cognition ...

Remicade and methotrexate are driving the infections...but when I don't take..I start flaring and the fistula that closed on my abdomen skin starts to get red, irritated, hot to the touch....so I'm unable to get off them. Have developed new allergies to meds I've taken for years and new meds sometimes cause severe allergic reactions...so GI scared of trying new meds for the UC and Crohn's. Just had a scope and pathologist found both UC and Crohn's for 3rd or 4th time. So have both I guess.... But GI thinks its Crohn's driving the immune system issues, fistula not healing, etc. And it's Crohn's that they found in my stump and anus.

So going to try the BHB to slow down mucus.

Hope it works for me too...
Thanks!
Clo

3x,

Thank you. I'll ask for that too. I wonder if you can get it over the counter...

And is there a specific dosage or does the Dr decide?

Got it. Will call doctor tomorrow. He didn't even offer. Said to come back when I felt more pain...

Apparently one stone is on its away out the other is attached in kidney. He wants to see if the one passes and is leaving the other alone until it moves.

I'm ready to start swigging apple cider vinegar, lemon juice and olive oil if that'll help.lol...

Maybe between the potassium and BHB it'll help.

Thanks so much!

Clo