Posted , 20 users are following.
Is anyone else here doing it. What length of time have you been doing it in total. I`ve been at it for five months now. I had Turp which was unsuccessful ...I worry I might have to do it for life..Anyone else in this situation on here.?
0 likes, 61 replies
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hank1953 GInAndPlatnic46
Posted
Are you experiencing any difficulty with CIC ? I've been self cathing for over 3 years, using prelubed Coloplast Speedicath with limited success due to frequently bleeding. Recently, I've switched over to softer catheters and the bleeding has stopped.
Motto hank1953
Posted
Are there any softer cathetes which are prelubed?
hank1953 Motto
Posted
Cure Ultra are prelubed, not with water but with a gel lube. I tried it, worked ok, but the gel is thick so it sometimes irritated my urethra. I currently use hydrophilic with water packet or use external lube.
alan86734 GInAndPlatnic46
Posted
Hi, Geoff,
Before I get too deep into this I must issue the classical warning: I am not a Doctor and my knowledge of medical matters does not go beyond High School Human Anatomy, Physiology, and Psychology; you pass at your own risk. With this off my chest I can now proceed.
In your reply to Motto you stated “I woke the other night with an erection from the need to ps.” I’m glad you brought this point up. I am aware that the following does not apply to you in this case, but some nurses still follow what they were taught many years ago, i.e. it is impossible to catheterize a male unless his penis is completely flaccid. However, this is not entirely true and for some of us, myself included, a partial or full erection can actually facilitate catheter insertion.
Another little tip that might be useful to you concerns your urodynamic test coming up in October. You will notice that all the catheters used are minute; Fr-6 or smaller. Also, be careful how you look at all lab equipment. Show maximum disinterest or staff might come to the erroneous conclusion that you are “casing the joint with the intent of gaming the results”. Rest assured that the small catheters and strict surveillance are there to ensure that no data becomes skewed by the collection process proper.
Well Geoff, I really hope that this helps you to get your health back on track. This is the second response that I’m sending you so please disregard the first one which appears to have vanished in the great filing cabinet in the sky! Warm regards, alan886734.
don74049 GInAndPlatnic46
Posted
Did your doctor check for bladder stones?
Howard31850 GInAndPlatnic46
Posted
A flexible scope cystoscopy is really important for you. Make sure it is flexible as rigid ones can cause trouble. A cystoscopy will show you if there is a median lobe blocking the bladder neck. It will also show the state of your urethra, prostate walls that line the urethra, bladder neck, bladder wall and so much more. It only takes less than a minute and is painless. Hopefully your doctor will give you a monitor by your head so you can watch the journey realtime. I had one 3 years ago and am scheduled for another one in 2 weeks. It will also show any early signs of bladder cancer.
I've been doing CIC 3 years now, 4 times/day. I also use Speedicaths 14fr with coude tips which really help a lot to get around my very large prostate (300cc). I have a good natural void too during the day - about 250cc - and I empty about half my bladder. At night i wake up once in full retention and take out 750cc. Then i go back to sleep. It is very easy now and I am very grateful to have this option for me as i control my bladder instead of the other way around.
It is also important to get a kidney ultrasound and a blood test for your creatinine as these indicate the health of your kidneys which can be impacted by BPH. Good luck to you. Howard
oldbuzzard Howard31850
Posted
Some thoughts.
Howard31850 oldbuzzard
Posted
Hi oldbuzzard - Thanks for your comments. I hope you are well.
Three years ago just before I started CIC I had a cystoscopy which showed no median lobe and no bladder neck obstruction which explained why i could still NV with a 300cc prostate. But it show considerable bladder wall degradation in terms of muscling (fibrosis), thickening, trabeculation and 2 diverticula. Also a kidney u/s scan showed some hydronephrosis on the left kidney.
So I tried a PAE right away which had no impact (except to lighten my bank account). With the help of jimjames and you and others I learned to do CIC rather than submit to another procedure. The only 2 available to me for my size were Holep and a robotic SP.
Anyway, 4000 CIC's later I am doing well. I just had another cystoscopy 2 weeks ago and the bladder wall has improved a lot - very minor trabeculation and fibrosis and no diverticula. Also my kidneys are fine.
During the day my NVs are from 150 to 250 cc and my PVRs when I follow an NV with a CIC are around 200 to 250cc - so I void about half the urine. But at night I awake once with discomfort and cannot void at all and usually CIC 700 to 1000ml!! Then I go back to sleep ok and when I awake I have a good NV by itself of 200 to 300cc!
Howard31850
Posted
.... the message was going wonky so I sent it before I lost it ..here is the rest of my message
My urologist commented when he did the cystoscopy that my prostate was pushing up into my bladder and taking up about 25% of the bladder volume. Now that sounds bad but I think it is why I recover so well from such large CICs at night and have good NVs during the day. The prostate glandular tissue is very compressible so i think it acts like an air bladder in a pressure tank to make my whole bladder much more compressible than it would otherwise be with just my bladder wall. So along with daily CIC I think it explains my bladder health.
I've had 3 UTIs in the past year and all were fixed with Amoxicilin.
I wish you well and thanks for getting me up the learning curve.
Howard
TKM Howard31850
Posted
Howard,
It's good to hear your bladder has made some recovery due to CIC. Your one of the first people to report that. It is especially useful information since you and you Urologist saw it before and after 3 years of CIC with a cystoscope. It is proof that the bladder can be rehabed by CIC and probably also after a procedure that removes a bladder outlet obstruction.
steven05114 has also reported dropping PVR months after doing Rezum which is also proof of bladder recovery.
Thomas
Light1 TKM
Posted
Thomas,
Jimjames on this forum has been saying for years that CIC will rehab the bladder. He has not posted recently but you can look up his posts.
Best wishes,
Fred
Howard31850 TKM
Posted
Thanks Thomas. I should also mention that my prostate has not changed in size over the past 3 years. It was 285cc 3 years ago and still is the same. I thought it might still grow so that is good. I've been on Avodart and Uroxatral (alpha blocker) for over 10 years now. I've also had 2 dynamic 3T-MRI's of the prostate over 3 years just to track a suspicious lesion that showed up after my PAE. It was biopsied 2 years ago by Dr. K and shown to be just inflammation. The MRI also confirmed the size.
Yes - I owe my prostate, bladder and kidneys to jimjames. I hope he is well and at least reading these testimonials to his pioneering efforts to help us. Be well. Howard
Howard31850
Posted
Correction ..I should have said that I've had 3 UTIs over the past 3 years and not the past year. jimjames used to say he got one a year and that has been my experience too.
frank27027 GInAndPlatnic46
Posted
Hi, I have been doing this {CIC} 3 years already,and still doing it 6times a day.
I don;t know if age has anything to do with it. How old are you? You say Turp didn't work?
Would you tell me about this?Did they do a urodynamics test before surgery?
send me a private message,
frank,
alan86734 frank27027
Posted
Hi, Frank,
For the record, I am a young 90 years old, suffer from urinary retention, about 50% and 50% catheter, have undergone a urodynamic test, have not undergone any surgeries just yet, have CICd for a total of 4 1/2 years with substantial time gaps here and there.
Warm regards, alan86734.
frank27027 alan86734
Posted
Hi Alan, I'm almost 90 Did you pass the Urodynmaics test? I failed this test.How many times a day do you do CIC?Do you find that foods you eat can cause frequency? Whats your opinion on this?I assume you passed the Urodnmaics test? Have you ever had chronic total urine retention?I am confused ,1 urooligist says i hve an enlarged prostate that is my obstruction,another URO says it'smy bladder,i could never have a normal void. Alan it;s nice to know we are both same age. I don't know if surgery is a good option at this age. Whats your opinion on this?
frank,
steven05114 frank27027
Posted
Hi Frank,
.
About a year ago in July 2018, I flunked my urodynamics test too. In November 2018, I went ahead anyway to have a successful Rezum that removed the obstruction caused by BPH. I also had AUR, with 2 liters of pee taken out of me in January 2018. Note that I am 63.
.
My cystoscopy showed moderate bladder trabeculation which is bladder damage caused by the obstruction. My PVR's which I measure by self-cathing remain above 100 ml due to the bladder damage. Over the last 3 months, they have dropped by almost 50 ml so my bladder is slowly recovering.
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So both urologists are giving you related information. Bladder outlet obstruction (BOO) from the enlarged prostate leads to bladder damage (trabeculation). One of the big lessons in my BPH journey is that bladder damage is an innocent victim of BPH BOO.
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Surgery may not be a good idea at your age, but seeing a few urologists to get a few professional opinions may be a good idea.
.
Steve
TKM frank27027
Posted
Frank,
There was a woman on this web site last year who was looking for a procedure for her 89 year old father who was paralyzed on one side due to a stroke, caused by general anesthesia, from a previous surgery. Many people recommended CIC, but he could not do it because of the stroke. They finely settled on doing PAE under twighlight anesthesia. If I remember correctly it was successful and helped him.
Perhaps some others can comment on this as my memory is hazy about the details.
Thomas
alan86734 frank27027
Posted
Hi, Frank,
Good to hear from you, and the fact that you are still asking questions is, in my humble opinion, proof that you are still hell-bent on survival.
"Did you pass the urodynamics test?" Yes, I did. Verdict: bladder outlet blockage. Recommend TURP. My urologist: said no, do CIC. The bladder sphyncter is not opening properly due to neurogenic impairment and I did handle metallic mercury years ago which could have led to nerve damage.
"How many times a day do you CIC?" Average 3 using straight Fr-16 Cure catheters.
"Do you find that foods you eat can cause frequency?" Yes, indeed it can. Spiced food such as curry, and beef, chicken, pork, are all no-nos.
"Whats your opinion on this?" We are still searching for a tolerable combination, if such exists.
"Urodynamics yes (see above)"
"Have you ever had chronic total urine retention?" Yes I have and was kept in as an in-patient for two days. I was eventually diagnosed with c-diff beginning of August of last year.
"Confused, .....enlarged prostate, .....bladder. surgery?" I followed JimJames' guidance as so many others have and my natural void is about 250 ml and via catheter the same amount which is a great improvement, in my opinion. I have been passing a Fr-26 catheter to stretch my urethra a tad after undergoing a bladder irrigation with a Fr-22. This was tight at first which completely obliterated my feedback but now the stretching is taking effect and I'm retaining full control once again. Good feedback is essential if this procedure is to become as natural as brushing ones teeth. I also get a partial, or even a full erection during this procedure, and this helps enormously.
Frank, I hope I have given you answers that are helpful. Other Forum members have helped me and, by way of repayment, have asked me to pass it on. Warm regards, alan86734.
oldbuzzard frank27027
Posted
Have a competent uro scope you and see if your prostate is part of the problem. If it is, I'd recommend Rezum - probably the safest thing for someone your age - and it usually works as well as surgery.
You know you have bladder damage - but that your bladder isn't totally dead. If your prostate is in fact blocking your urethra, dealing with that could well make your less than optimal bladder function good enough to function normally. I had both problems and Rezum opened me up enough that while I don't have perfect function, I can always empty and can wait a normal length of time between voids. Not perfect, but way better, functionally normal and slowly improving even 3 1/2 years later.
TKM
Posted
Frank,
I found a post from Laura00828 who help her dad find the PAE procedure:
laura00828
ChuckP
Message
Posted 5 months ago
PAE UPDATE
Hello, I haven't posted in a long time and since this site has been so helpful to me I wanted to post my dad's results to maybe help someone else.
My dad is 87. A stroke from anesthesia 11 years ago left him unable to speak, write, read and 1 arm paralyzed. He started having overflow incontinence about 2.5 years ago. When we took him to uro we found out that he was retaining 600 cc and had to go on a Foley catheter. He was hospitalized twice from infection and bleeding.
We went down a long, awful road -probably 10 different doctors, and were turned down for Urolift and
Rezum. Because we were doing our best to avoid general anesthesia I came to this site and found out about PAE.
In September 2018 we flew to VA and my dad had the procedure with Dr. Bagla. As procedures go this one went smoothly and we felt very confident when we saw the facility and the tight ship that is run.
He still had to wear the catheter for a while (maybe till November). Then his PVR was around 280/300 and the Uro let him go home without the catheter. Today's check up (almost 5 months to the date of procedure)--His prostate went from 95 g to 56 g and his PVR was only 84 ccs. He still has incontinence but that may be from the stroke we're told. We are super happy to have him off the Foley and I am really grateful to Dr. Bagla, his excellent team and all the wonderful people here who share information.
Oh--one more thing. My dad had FIVE stones, one of which was over 1 cm. We used Herb Pharm Stonebreaker tincture for 2.5 months....not one stone was left!!!! It works.
This is from a discussion titled: "Has anyone out there had a " Prostate Artery Embolization?? "
Thomas
TKM
Posted
Frank,
The woman who helped her father find the PAE procedure was laura00828 and the discussion was "Has anyone out there had a "Prostate Artery Embolization??" . You can search for it.
His PVR went from 600cc to 84cc.
I tried to copy and paste it but it was moderated.
Thomas
frank27027 oldbuzzard
Posted
HI, I was told my prostate was to large for Rezum 116 grams.
Like all the other urologists they suggest Turp. I think I'm to old for this procedure. Have you heard of anyone almost 90 that did TUrp?
What size was your prostate when you had Rezum done, Your saying you had bladder and enlarged prostate problem,i still get the urge to pee usually 3 hours apart. Did you get this urge before you had Rezum? I wish i could have tryed Rezum?How long do you wait between Voids? How many times a day do you cath?
Thanks for this info,
frank,
frank27027 alan86734
Posted
Alan, Thanks for all this info. I also had C-diff mine lasted 7 months and over 200 antibiotics. i had 3 relapses. What helped me finally was an infusion Zinplava. How long did you have C-Diff? How did you have get through this ?You followed JImJames guidance ,i assume you mean doing CIC?Was there something you did ,or have taken to give you the natural void?
I assume fish is ok in your diet? Mine too.I sure wish i could find a way to cut CIC to 3 times a day. Alan,we both have made to 90 years young,I believe thats a blessing in itself.
sincerely,
frank 27027
alan86734 frank27027
Posted
Hi, Frank,
Thank you for your response, Your encounter with C-diff definitely qualifies the pair of us to belong to the same club! C-diff belongs in our gut, but not in the over population states which occur. I had 5 rounds of Cipro, each of 14 days in duration, and that was enough to allow the C-diff "out of its cage", so to speak. You're absolutely right, JimJames, and Cartoonman, helped me with choosing and using catheters. The C-diff was finally conquered with Bactrim, if my memory serves me right. The natural void came, as the explanation states, naturally. However, I do remember taking finasteride somewhere around then but, after two weeks of this I found myself developing breasts and I had no particular desire to compete with Dolly Parton, so I discontinued the finasteride forthwith.
I don't know the medication Zinplava but quite likely it is derived from the fecal matter provided by a healthy human being. I know, this sounds absolutely gross, but it is the live culture the medics are after to start the colony needed in your gut
You are CICing more than three times per day. If this is causing you problems such as urethral irritation, discharge, or bleeding, then let me know, along with information as to what catheters you are using. If this is so let me know, I might be able to help. But, please remember, I am not a Doctor.
Nice talking to you. Warm regards, alan86734.
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