Hi EveryoneI'm having real anxiety about my dialysis sessions. Warning TMI 😳😳 Recently I have been having issues, when I go to the toilet. I thought it was a UTI but nothing showed up in tests. My GP believes it's due to lack of oestrogen. I am now on Gina an OTC oestrogen medication since last Saturday.
I constantly feel as if i need to empty my bladder. I also get a stinging sensation just as I finish urinating. This is bad enough.but now I am worrying myself stupid, when it comes to my dialysis session. We are allowed one toilet break of 15 mins, if we need one, when on the machine. For the past 3 weeks I have been asking to get taken off so i can go to the toilet. I only ask once and then try to hold it in, until session is over. Apart from my kidneys I am fit and work and have no problems with motability, so I never request the commode. I just can't use it. I am in a unit woth another 30 patients. We sit less than 1 metre from each other and I just can't use one, knowing its just a curtain separating us. Plus the curtains don't go all the way round, so staff and other workers in the unit can see, if they walk past. On Tuesday, I asked one of the nurses, if I could go to the toilet. She just snapped back..you can't keep doing this. You are going to get an infection in your line. You can just use the commode. I was so shocked at her attitude. I just said I am not using it and can you please take me off. She did it but wasn't happy and had an attitude with me for the rest of the day. Now I am even more anxious about asking and trying to put it off as long as possible. Which I know is not good for my kidneys. I cant even discuss this with the staff as everyone hears what is being said. The staff are not discreet and seem to forget that some patients are not happy with everyone knowing their issues. Sorry for the long post. Just feeling really down about it all. Thought I was on an even keel with dialysis but this has floored me
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Ziggydoodah
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Ziggy, that's awful. I would report it to the charge nurse and then all the way up the chain of command. Being able to urinate is a gift. You do not need the stress. They do not want to do it because it is more work for them. Hell, they cap the line with a syringe and off you go. Screw them. It is a fable that it will cause an infection if they do it right. Nothing is exposed.
I do home hemo and I barely make it to the bathroom when I get off. It is just a bit over 2 hours and I am maxed out if I have an alarm. In the beginning, the Neph at one point said let's do 2.5 and I said no way. You cannot come off home hemo during a treatment. I said what am I supposed to do about peeing..... and she had the audacity to say wear a diaper. NO way lady. Screw you.
Your post really angered me because I get it. It's all about what makes the medical team happy, not the patient. I do not know about the feeling you are having other than it sounds like a UTI. I would have them check it again soon, just because the test could have failed.
Oh Bassetmommer, your reply made me cry. I always respect your posts as you are so knowledgeable. Just knowing that another female dialysis patient "gets it" is a massive relief. When I first had symptoms of UTI I was given antibiotics by my GP. (I had similar symptoms when first diagnosed with CKD and was given antibiotics. However when I told my consultant, he said they were not suitable for kidney patients) So I quietly asked the same nurse 🙄🙄..if she could check these ones were suitable. She then went to scrub up before putting me on. Then in a loud voice, she announced..I don't know why you have been given antibiotics for a urine infection, if they haven't done culture's on your urine. So everyone knew i was having issues. I was mortified. Then a second nurse who i get on well with came up to see how I was. I confided in her that I thought I had a UTI and she just looked at me as if I had grown two heads and said..its your age 🙄🙄🙄..I'm 53. I am very up front with people about my illness. I keep my family, friends and employers up-to-date etc..however the attitude of the staff has made me feel very self conscious. I feel almost ashamed for peeing so much😔😔.. one patient even announced yesterday..You never went to the toilet during dialysis today 🙄🙄...I am actually getting jealous of the patients that cant pee. Which is just ridiculous. However 4 hours is LONG time when you need to go. Thank you again for your reply. I really appreciate it xx
I'd try to see a urology specialist to get to the source of the problem. If the oestrogen isn't helping they need to figure this out. Frequency and burning do sound like a UTI. Demand to get retested.
I have life long GI issues. I got ulcerative colitis as a teen, lost my colon at 30 and now, 61, I've lived with an ileostomy for nearly 30 years. I used to joke I lost all my modesty the first time they filled me barium and a balloon to do imaging studies of my lower GI tract. Then they deflated the balloon and told me to hold it. HA! HA!
I was going to keep my surgery a secret. Then I switched jobs and my new insurance wouldn't pay for my ostomy bags. I had to out myself to lobby for coverage. I love telworking because I no longer have to tell my boss when I have to run home due to an accident. Leaks are very rare, but they do happen every couple of months.
I would probably use the commode and just shout something sarcastic. "Sorry folks, I begged them to let me use the restroom without an audience. Please don't be jealous I still pee! "
I'm not on dialysis yet, but my big fear is having to empty my ileostomy bag during treatment. Whatever happens will happen.
Thank you for your reply Barbara. Yes I do need to get it investigated. I think I have just put my head in the sand as I just can't face more medical issues. Six weeks ago I had to get my AV fistula re-routed as the blood flow was too high. Everyone said it was a straightforward operation. Turns out it wasn't. It was a lot more complicated, than the surgeon thought. Two hours after I woke up from the general anaesthetic, I was wheeled in to put a line in. It was so brutal, I ended up shaking violently, then bursting into tears. I had to be sedated. Think having two procedures in the space of a few hours, shocked my body. It has also made me really apprehensive and anxious. I used to take everything in my stride. By the way there is a woman that attends my unit. She also has a bag. She just takes it in her stride. Goes to the bathroom before she starts and after she finishes. Thanks again for for your reply and sorry if I rambled on!! Hopefully it will be a long time until you start dialysis. Take care x
I've had so many medical tests and surgeries. I have to try and stay upbeat. The depression can be overwhelming. I tell new Dr that my body has been trying to kill me since I was 15. 46 years! My favorite one liner was when I asked the insurance executive who told me ostomy bags were convenience items I could live without, like q tips. I offered to come stand on his desk, over his head, and remove my bag so he could see how convenient it was.
OMG Barbara you are precious.... I almost peed myself reading this..... You know it is that sense of humor that makes you special and gives such strength to folks.
Well, I had surgery in late December, a Christmas gift to myself because life without a colon and an internal rescecetion was horrible. I was shocked my Cadillac insurance didn't cover my bags at the standard 80/20. I lobbied my employer and the insurance company hired to administer our employer paid heath care. We are self insured. I'm unionized and had my union request it. I called dozens of people. When I met a insurance company exec I got on her. She called her boss, who already knew me. I got coverage in April and the following health care contract mandated 80/20 coverage for ostomy supplies for over 50,000 employees and family.
PD was never an option for me as I had my gallbladder removed. So any operations in the stomach area, then PD is ruled out. Thanks for suggesting it though.
Try Thinxs underwear. They are made for periods but should work in a pinch. I wear them when I get a cold and cough (and bronchitis) so hard and often...I pee in my pants 😭 I was tired of changing my underwear and/or pants. Love them. They work great and keeps your nether regions dry. Or Depends.
I'm really hoping I don't get to that stage but I will keep a note of your suggestion and Google them 👍....I am literally just back from the toilet 😳😳...I was starting to get really anxious about asking, after my previous my experience. However it was a young, recently trained nurse. She was so lovely. I kept apologising to her but she said don't be daft..if you need to go, you need to go! Done quickly and without guilt tripping me....I will fight on for the right to pee in privacy and with dignity 💪💪💪...I will use Barbara as a role model 😁😁😁😁 Thanks again for taking the time to reply x
Ziggy, sometimes it really isn't a UTI. I had that UTI feeling for months and my GP performed all the tests and it was not coming up as a UTI. She suggested a suppository for vaginal dryness and that actually ended up working for me.
Same thing here I kept going to doctor every month five months uti system finally my kidney doctor said it may not be a uti want me to estrogen cream. Yes being able to urinate is a blessing it hit me all of sudden I can’t urinate I only go drops at a time yes if it was them walking in your shoes they would make sure they went to bedroom.
Hi Beachgirl...Its amazing how many women are suffering with this. I had obviously heard of HRT etc but the Oestrogen issues etc have been a revelation to me. I have even started looking into biofilms and the bladder. Seems this could be an issue with the bladder and waterworks. So did you just stop peeing then or was it gradual? I agree, this has literally taken over my life. I hope the nursing staff never have to experience this on a personal level..Well maybe one 🤔🤔
I was peeing fine in December in Kan first uti it was actually an uti but then I had uti symptoms for the next five months my doctor even did a renal ultra sound to make sure no blockage . There wasn’t . They tell me it happens when you are on dialysis sometime but I’m on pd dialysis you usually keep a good urine flow . I sill go but very little it I do a half cup a day I’m lucky it happen pretty fast .
What type of suppository? Glycerin, or hormonal supp?I too have problems yearly with UTI. In literature from Sjogren's Foundation, says patients can experience frequent UTI's due to Sjogren's. That was a revelation for me!
It's called Replens and my doctor suggested it. They are glycerin based. I can't have estrogen because I had hormone positive BC. In fact, I am soon getting prescribed some medication to reduce estrogen so I might have to start with the Replens again!
Hi Ziggydoodah, I have not had dialysis, but I am a nurse and that kind of response by any caretaker is not acceptable.. I would call in and ask to talk with the Office Manager or your Care Coordinator explain your symptoms and concerns abd how they suggest you handle it going forward. I agree with an earlier post to get an evaluation by a urologist as to.the cause.. I would imagine this process would be stressful enough without these added comments by the caregiver. Sometimes things are going on in caregivers lives as well which we don't know about, but they need to know if it's affecting their care so they can address it.. K
Thank you Kay. It's nice to hear from a nurses perspective. My GP is convinced it is low Oestrogen levels. So I'm hoping I get some relief and soon.This nurse has a reputation for being "stroppy"...its like walking on eggshells around her sometimes. She has been in the until for about 20 years and she is a good nurse regarding the technical side of things. Another staff member confided in me, that he had to speak to her about the way she spoke to another patient. I said, I thought it was just me!!..he burst out laughing and said..she is like that with the staff too 😳😳..I now feel I can deal with her and whatever she throws at me...probably the commode 😎 and thanks for all the lovely support x
You have a right to your dignity - and whatever that means for you. I do hope they give those offending nurses an inservice on patient care. Regarding your need to pee ... I think your GP is dead on about the estrogen. It happens to many of us as we get older. I've been using an OTC cream that contains estriol, not estrogen, so it's not as strong for women who are concerned about breast cancer. If you'd like the name, I can send it to you. Their website is incredibly informative and their facebook page is filled with success stories. Personally, I have been thrilled with the results.
I was talking to a nurse last week regarding my husband's health care, and she praised me for being such an advocate for him. She said, "you know, you really need to be your own advocate with health care. Nobody cares as much as you do." Keep on being your own advocate!!!
I’m so sorry you are going through this, I truly am.
There’s a lot of shame around bodily functions in general.
It’s taken me a long time to be able to say to doctors “I have stress incontinence.”
Then when I was first seeing new doctors, people in the centers etc, they ALL wanted to know “Do you still urinate?” The lack of privacy at centers is awful! The doctors come and stand in front of the patients in the dialysis chair and we all have to pretend we don’t hear, etc.
When I started dialysis fortunately I wasn’t as sick, still had some function, so it was only 3 hours, and I did mange to “hold it.” I was terrified I’d have to go during treatment.
Eventually I was barely passing urine, maybe a tiny bit in the AM that was it. By that time I was up to 3 hours and 45 min the machine. My friend said “Oh you poor thing, do they at least let you have a bedpan?” She didn’t get that I didn’t urinate anymore.
They should not make you feel like an inconvenience. The staff can get so set in their routine…
I almost changed centers at one point. Could that be an option for you?
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