Recurrent UTIs with Urostomy - Seeking Advice

Calling all urostomates!!!

I have only had my urostomy for two and a half years, but in that time, I am getting many recurrent urinary tract infections, the last three with only one IV antibiotic that it is sensitive to that will not damage my kidneys.

I shower every day without my bag on, allowing just water to wash my stoma and the inside of my wafer. I don't apply any product on my stoma after the shower, then put on a new bag for the coming day.

I change my flange and bag every two to three days where care is used to ensure hands are sterile and the stoma is not touched except by the barrier ring seal.

I drink at least two liters of water every day, sometimes up to three liters, and I take 10,000+ cranberry capsules. I have been on a course of urinary alkalinizer as well as an everyday preventive antibacterial tablet.

Do others suffer with these infections, and has anyone found something that can help?

My symptoms include stabbing kidney pain, general pain, high temps of over 40°C, chills, sweating, and an overall feeling of being very sick with no appetite.

I am willing to try anything my doctors will allow me to use. It is getting very bad contracting a new infection just days after finishing a course of antibiotics. Some days, just trying to get to the hospital to receive my IV antibiotic becomes very hard, and I think I would be better off admitted, but it is too easy to pick up other infections in the hospital. I may be much worse off.

Bob, I have an ileostomy so consider the source. Your posting seems all about managing symptoms. I would look to find what's causing them. You may do better to consult another specialist who has the wisdom and experience to get to the heart of the matter. Good luck!
PB

Thank you Primeboy, I am directly under an infection specialist with the help of a urologist, my GP, and my stoma nurse. They have told me they can only treat the symptoms and not help with the problem, not a very reassuring situation.

I have now been on a high dose IV antibiotic for 6 days now, and my urine is still very heavily contaminated with blood and stinks. My pain has settled to some degree but has in no way left or really under control.

Please don't get me wrong, I am not here to cry about it, I do that anywhere, anytime, I am just looking to others to see if I am alone in my situation, or are there many like me, and has anyone found something to help.

Hi Bob

I have an ileal conduit as well - just over 2 years ago now since my radical cystectomy. I have not had a single infection, though. And my routine is far less stringent than yours. I wear a 2-piece Hollister, and only change the flange and pouch every 5th day. I do strive to drink lots of water, 2 to 3 liters, and succeed at that most days.

Perhaps you will find somebody with the experience/solution you're seeking if you re-post to another forum specifically for urostomates. I am thinking of

http://www.inspire.com/groups/bladder-cancer-advocacy-network/

Sorry I can't help with this problem. It sounds quite unreasonable to me that all the medical people involved - the specialist, the GP, and the stoma nurse can't give you any reason that this is happening. Is it possible to see a different urologist maybe?

Good luck.

I feel a bit of a fraud, having had my bladder removed over 6 years ago. Apart from a post-op incisional hernia repair a couple of years later, I have experienced no problems. I eat anything I want and change my one-piece bag once every 24 hours. I would find a two-piece system amazingly inconvenient and would be constantly worrying about the baseplate adhesive unsticking after a couple of days. I also shower with the bag off and don't stick to any particular hygiene routine. I don't drink a lot of water, but I do consume juice and squash, plus a moderate amount of wines, beers, and spirits (vodka with cranberry juice). I do hope your medical crew finds an answer to your problems soon. Us humans are complicated machines and we all seem to react differently to different situations. Best wishes.

I doubt that there is any relation to the situation, but I have just had my latest PET/CT scan which revealed two new cancers, one very close to my right kidney. I will be seeing my oncologist tomorrow and we will see where we go from here.

Bob

Hi Bob, sorry to hear of your problems and also the new tumors. I have only had an ileostomy for approx 5-6 months (done twice!), however, I have had a severe problem with interstitial cystitis and interstitial nephritis. Plus bacterial infections and constant tumors. This began as a child many years ago but worsened after the birth of my youngest son in 1985. I then found out that I had cancer and had to have a hysterectomy and bowel resection and my bladder and kidneys were also affected.
Since 1985, I have been in the OR every 12 weeks, plus daily antibiotics, steroids, intragram to help the immune system balance and work, and still ended up with a urinary bag so now I have a pair!
I am sure that once your tumors are dealt with, your specialist (urologist or nephrologist not the stoma doctor) can completely review your situation as I know how painful and miserable it is to deal constantly with these problems. I am immune to most antibiotics now and so have to get gentomycin IV when the bacteria count is high and my usual meds don't work.
The two things that have helped me most are:
intragram (human immunoglobulin IV monthly 2 x 250ml bottles they are not sure how this works effectively for this condition but the results are astounding, I believe it is because we are no longer having to fight the infections with an impaired immune system) and:
either hydrocortisone 100 IV or a graduated dose of steroids which reduces inflammation. I sincerely wish you well and will pray for an answer and a good outcome. God bless you and care for you through your surgery/follow-up treatment. PS I always test my urine output with strips to see whether there is any blood, protein, leukocytes, nitrites, and another that I can't remember at the moment, it just identifies whether it is an actual infection or whether it is inflammatory both have the same awful symptoms but you will be able to work out an action plan based on understanding the test results shown within 30-120 seconds.
Good adequate pain relief on a regular ongoing basis is also essential as I know I have felt suicidal at times with the pain and dragging sensation.