I need some reassurance - I am so scared now. - Kidney Disease

Kidney Disease

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I need some reassurance - I am so scared now.

fartikins profile image
12 Replies

Hello - I have been pencilled in for a cystoscopy next week. My nephrologist wants it done because a have a uti that just will not go whatever AB I take.

I know you shouldn't have this done if you have a uti but he said he is prepared to take the risk - but what about the risk to me.

I have already cancelled twice because of my fear of sepsis although I know you can get sepsis without a cystoscopy if you have a uti - but I have had it for a year now.

I also suffer with urinary retention and severe constipation from all the medications I have to take and have to strain very hard to pass a motion - but doing this after cystoscopy can burst the bladder or make it bleed.

I have tried every laxative under the sun but nothing works.

I cannot get Metamucil in the uk because of the cost - it is the equivalent of 80 dollars if I buy on line.

All of our doctors are on strike again for 5 days then that will be followed by a consultants strike for 2 days so we in the uk have no medical cover at all. There are nearly a million people on the waiting list for consultations and procedures.

My last gfr was 17 - my nephrologist wants it done t try and prevent it from dropping any further.

The procedure will be done at a private hospital but once they shut their doors you are on your own - thrown to the mercy of A and E where there are no doctors anyway.

what if I can't pass urine or go to the toilet because I am constipated.

I am so frightened now - I feel completely by myself and don't know which direction to turn.

Thanks for your support.

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12 Replies
Bet117 profile image
Bet117NKF Ambassador

Dear Fartikins,

I can well understand your concerns and fear of this or any procedure.

Bear in mind that if your doctor didn't think that it was safe, he wouldn't recommend it as the cause of your reoccurring uit's must be identified so that they can be treated and prevented.

No one likes to have any procedure, but take comfort that urologists are experts in this field and perform of these procedures under varied circumstances, daily.

The urologist who will do this procedure should have a chat with you prior to the procedure explaining how this will be done. Ask questions.

More than likely, they will ask for a urine sample and and give you an anti-biotic to prevent infection; make sure that you are given something.

I have had this as part of my assessment for kidney disease.

I'm sure that it has progressed with time, and everyone is different.

The procedure took less time then I expected ; no pain as I was given a topical anesthetic prior.

I was awake and able to watch it on the monitor. I had a female nurse with me throughout as a chaperone. The doctor spoke to me after and gave me his findings.

I can't stress enough that getting to the root of this is worth 20 minutes of a medical procedure.

As far as your constipation, it's not a pleasant thing to have.

Bulk laxatives, senna and bisocodyl/ stimulant laxatives are not for everyone.

Have a chat with your GP and Chemist/ Pharmacist and see if you can take purchase the new Ducolax liquid or Ducolax fruit chews in the UK.

It is different than traditional Ducolax pills as it contains no drugs or stimulants.

It has been rated well here as its a magnesium base. Just drink the water as directed with it. It does work well with no straining or cramps.

Stay positive and focus something that you will do when the procedure is over. We will be here waiting to hear.

Bet

fartikins profile image
fartikins in reply to Bet117

thank you for your kind reply

Bet117 profile image
Bet117NKF Ambassador in reply to fartikins

Of course! I'm in your corner! Say a prayer and stay positive.

All a process!

Beachgirl32 profile image
Beachgirl32

sorry you are still going through this . Hopefully you will have no problems after procedure. Sorry to hear doctors are on strike there.

I can only suggest one medication that doctor put me in fir constipation but it is a prescription med but he said best one for kidney (Lactulose )is generally a safe medication for patients with chronic kidney disease

fartikins profile image
fartikins in reply to Beachgirl32

thank you for your kind reply

Marbella17 profile image
Marbella17

Sorry to hear about all the troubles. I’ve had some experience having to deal with similar issues so I’ll share as this might be a possible option to consider. My 76 yo dad had ongoing UTIs as well for a while and it was due to chronic urinary retention… for years he had about 500-800 cc’s of urine remain in the bladder after he urinated. That’s something that can also affect renal function. He has now been on a Foley catheter since June 2021. He’s had intermittent hematuria over the last few months so they suggested to do a cystoscopy on him as well however since it’s not consistent, I’ve been able to track a pattern, it seems to be as a result of any movement that involves stretching - he’s not very mobile anymore sadly and getting in and out of the car is an ordeal which stretches that area a lot, that’s why we’re not rushing to the cystoscopy as it appears to be some mild urethral trauma that happens from the stretch. However if there’s ever any severe symptoms that appear to be beyond any reasoning then I would at that point take a different approach towards that exam. I completely feel you for wanting to avoid any extra potential risks, hope all goes smoothly and well if that does end up being the only option for you to further assess the chronic UTI.

Darlenia profile image
Darlenia

I feel for you. You've cancelled the procedure several times because of you're fearful and anxious about the outcome. Your prior posts outline and confirm this as well. I sense controlling your thoughts is your greatest challenge; not so much the cystoscopy. Perhaps ask your team about ways (medication/nonmedication/more details about procedure) to calm your mind so you can make wise and calm decisions and take the steps leading to good and stress free outcomes. A mind running amuck can prevent life-saving measures, it's not always your best friend. So, seek the tools to put your mind in its place. Finding peace of mind is worth gold. Wishing you a great outcome.

My heart aches for you, as I understand the anxiety. My husband has gone through something similar with either recurrent UTIs, or just one 6 month-long UTI. They have no idea why. I did my own research, and started him on a couple of supplements. Even the doctor is amazed at his progress - 5 months without a UTI! Of course, any supplements should be run by your nephrologist, and if you're interested, I can share.

For the constipation ... can you get psyllium husk powder in the UK? That's what we take, and it's exactly what Metamucil is comprised of (except Metamucil has sugars and oil added.) Not always easy to get down, but works like a dream. We take it every night.

Please keep us posted. Rooting for you fartikins!!

fartikins profile image
fartikins in reply to GoodHealthIsAJourney

thank you all for your kind replies.

kellyscats1 profile image
kellyscats1

glad you are going to have it d0ne

.you have been puttng it off forever and if you want a diagnosis it is the only way..no it is not fun but t is lik a root canal.. you can complain forever about a tooth ache and need a root canal... and that does hurt..or can continud to complain until the pain is unbearable and need an extraction...

put on your big girl pants and tke care of yourself..we all sort of get tired of litstening to someone complain and refuses to do what is necessary..you will be fine....

Constipation can be treated... someone mentioned lactulose... it is good stuff..sadly many old people become obsessed with havinng a BM.. the obsession is far more debilitating than the constipation..

I am sure you will be just fine,,,,and if you change your mind again.. well.. then it best you stop complaining,,it will be your choice... but once you do we will all hear how great it is and that is good,,,,,,,

RosemaryandThyme profile image
RosemaryandThyme

I understand how desperate you can feel as the days go by without a bowel movement as I also had years of suffering with constipation until I found OxyPowder. It is easily found on the internet. I use Dr, Edward Group's site. It's $49. U.S. It's also a colon cleanser and loosens all the old feces that has attached itself to the insides of the intestines. The main ingredient is magnesium which your body needs anyway so it is perfectly safe. I have been taking it for a year now and I am so glad I don't have to worry about being constipated any more.

As for the uti have you tried D Manose? I read a university report that said if D Manose isn't working for you, you are probably not taking enough. I used to get 3 infections a year so I took 6 pills a day for 3 days and then I think 2 a day for 10 days. I also took a probiotic, ate cranberries and some vitamins. I also tried to avoid sugar. I haven't had a uti for 10 months now so I am keeping my fingers crossed.

Good luck, dear. I am keeping my fingers crossed for you too.

Miss-guineapig profile image
Miss-guineapig

Wishing you well and keep us posted. Have you tried and persisted with Movicil sachets for constipation? Like you I have tried everything re constipation but Movicol works, really works. Sorry to give too much detail, but after taking for 2-3 days you will initially running to loo but once you start working out the correct dose for you, so long as you keep taking it, it works. Good luck xx I am down to a sachet a day now but can’t miss one day or back to square one. X

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