Long Term Catheterisation issues - Advice sought
Posted , 5 users are following.
I'm 67 with long standing BPH, treated with blockers and finasteride, which has made life a misery for large parts. I've recently been catherisied (again) following retention. The urologist consultant at hospital suggested discharge with self-cath' in the interim between tests. However, when nurse instructed me in the procedure she couldn't get it past the prostate, she called for a urology doc and he only got it in with diffeculty and plently trauma. He consulted up and they agreed to send me home with catheter. Now I guess I'm looking at a TURP of some sort. I guess I'm too far gone for rezum. I can't see (nor face the prospect of) self-cath', so knowing state of waiting lists I see long-term catherisation ahead. I guess my query is..... what's the advice for living with cath? I know the hygiene stuff. However, the penis tip gets inverted at times, sore, the pipework moves about and the leg bag keeps going south. Surely there must be better ways to hold everything that is more comfortable and secure? Also, what about lubrication to ease discomfort and itching? I'm hoping to try a catheter valve to help retrain the bladder and at least solve the bag issue during the day. Anyone have experience of a valve no bag configuration? All help gratefully received.
0 likes, 17 replies
hank1953 chris97588
Edited
I would give self cathing a chance 1st. It is much more comfortable and manageable than those permanent (indwelling) catherization. Unless you have problems with your hands, you should be able to selfcath. It is vital to find the right catheter, in term of size and stiffness. Specifically, what catheter was given to you by the doctor's office ? Name brand? Size? Part number? Hank
jimjames hank1953
Edited
Hi Hank, I haven't been around for awhile, but I remember you from back then.
How is your CIC doing? Anything new in the way of promising procedures? What happened to all the guys who tried FLA with that Dr. K.? I remember some initial success and then some started relapsing. I see that in the US, more centers are using PAE. Is that urologist still posting here who does Rezum?
I'm still using CIC from time to time. It seems to go in waves. I have some new theories on this. I haven't had to self cath for over a month now, so may be on to something working. Bladder empties completely. lol. I also have a new voiding technique that I might start a thread on, if I can figure out how to navigate this site. That was one of the reasons I haven't been around much. I don't get notifications, can't find posts and logging in to the site is five times harder than getting into my bank account. What's going on here lol
If you respond to this but don't here back, send me a private message. I still get alerted for those.
Jim
hank1953 jimjames
Edited
Hi Jim, It's good to hear from you. I am still self cathing. It's very routine now just like you claimed, like brushing one's teeth, after I switched over to softer catheters. I found out that my retention and natural void are very sensitive to my digestive system. Constipation and stomach gas make it a lot worse. I haven't noted any new procedures that are any good, in terms of risk and reward. Things haven't gotten worse so I can still postpone it. In the meantime, I experiment with foods and supplements with the hope that may be I can solve what could be a bladder or pelvic or nerve problem. Maybe it's what you have, more of something else other than prostate. Maybe it's the sardines and spinach that you eat. 😀
Almost everyone is gone from this site, including those FLA pioneers. Many of them found FLA not long lasting so I'm glad that you advised me to wait. Right now hoLep is still my first choice. Hank
chris97588 hank1953
Posted
Thanks Hank. The self cath' was done in hospital, first unsuccessfully by the sister on ward and then successfully, after some difficulty by a urology doctor, after the sister failed. Indeed the indwell cath' was NOT easy to get in either and there was some trauma doing it and after it. I'm aware that people with disabilities often have to self cath' but I'm assuming that they mostly don't have the complication of an enlarged prostate. I guess that there's a possibility that there was some inflamation further enlarging the prostate at the time they tried to do me and thus it could be worth another go, I'll discuss it with the district nurse and urologist whenever I get to see him. Unfortunately I've no idea what my cc measurement is, nor do I have any idea what the size of the self cath' was that they tried to apply. Do you know what your prostate measurement is? It would encourage me to know that if mine was the same or smaller, that there is a prospect of using self cath'n. Thanks again.
hank1953 chris97588
Edited
My prostate size is only 70. However, there are many people on this forum with larger size than yours that were successful with self cathing. I still remember Howard whose prostate was over 300 gram. He did it for years and might be still doing it.
It may take some adjustments to succeed, like varying sizes and stiffness and lubrication. Some people are lucky and get it on first try. Some aren't like myself. It took me 3 years to find out that the cathters I was using was to stiff, and hence caused bleeding often. Hank
chris97588 hank1953
Posted
Yes Hank, I have the same issues with my digestive system. Before I got this latest bout and catheter any amount of gas or stool would stop the flow considerably. Further, I've had nerve transmission tests for problems with losing power in my left leg following a long standing back injury. In fact the consultant said he wanted more transmission tests on the bladder to see if there's a nerve problem complicating the water retention. I am seriously now going to explore the CIC option, armed with all of the helpful advice on this forum ;o).
hank1953 chris97588
Posted
Chris, in your case, nerve may be the main culprit. I suspect that it is my case as well, at least partially. For a long while, I lost all the urges to pee or poop. My symptoms improve quite a bit after I resolved the constipation problem. I am now trying to solve the gas problem.
You might want to try CIC just to buy time to see if you can figure what are the problems. Hank
hank1953 chris97588
Edited
Check out this discussion :
https://patient.info/forums/discuss/can-t-get-catheter-into-bladder-800129
It might help you with starting CIC. Hank
anders08675 chris97588
Posted
I had an indwelling catheter after several episodes of retention.
While researching my next move, I was on finasteride (which didn't do much) to try and shrink my prostate. Urologist said it takes at least 6 months before it will start working.
I tried self-cathing but tissue would block the catheter end. I tried different sizes from 12FR, eventually using 18FR. (Was told 18fr worked best with BPH patients.. that, and coude tips)
Got frustrated with the entire thing, and went back to an in-dwelling for convenience. (insertion got very easy after a few goes, and the pain was no longer a thing, it was the blockages that frustrated me)
I found leg bags were worthless. The weight of the fluid in the bag, and the flimsy straps would allow the bag to shift or to slide down and pull the tube out of the connection, causing leaks.. as well as having to empty the thing way too often since anything more that 25% full seemed to be too much for the straps if I wasn't stationary/sitting.
I ended up going with an adhesive stat-lock high up on my thigh, and an adjustable velcro catheter leg strap above the knee (acting as a strain relief).. and connected it to a "night drainage bag" that comes with a long tube, which I kept outside my pants (looped the tube up and out the waist band).
I would keep the drainage bag in a messenger bag with the shoulder strap, adjusted so it hung at my waist positioning things well and hiding the tube. (Similar to people carrying portable oxygen)
When I sat down, I would just put the bag under the chair.
All-in-all it worked really well for me. I could pass 1000ml without any issues before I needed to empty, so I wouldn't need to excuse myself from dinners, meetings, etc. and the msgr bag supported the weight easily. Something not possible with a leg bag.
Regarding the hygiene aspect. I kept alcohol prep pads from CVS.. box of 100 on my night stand, to clean up the tube. To make things more comfortable, I alternated between some triple antibiotic ointment or KY lubricating GEL.. the thick kind. (still haven't decided which i liked best) A nurse told me she has patients using "Blue Emu" I just never got around to trying it.
I also used some wide adhesive cloth tape (It was cardinal brand, but any kind will do) to secure my john thomas to my thigh above my stat lock if I was going to be moving or walking. That, and boxer briefs to keep everything snug and limit shifting. It kept the tube from going in and out, causing problems and pain.
Regarding the TURP... Read through the posts here. I was too big for a TURP, and my lasted uro was more than happy to do a laparoscopic procedure, a 3 night hospital stay, and associated recovery time.
I went with a HoLEP (by another Dr) and could not be happier. My post is up on here as well.
This didn't really address the "no-bag configuration", but it's an alternative that worked very well for me.
chris97588 anders08675
Posted
Thanks Andres. Plenty of food for thought there. I totally agree on leg bags. In fact the kit they've sent me home with isn't a liveable solution! Is the stat lock a catheter valve? I've requested a cath valve and the district nurse is arranging, though she's worried that I need to be strict on regular empting, as my kidneys need a rest (I had retained 1.4L a short while back...). She says that I can try during the day as long as I use a night bag sleeping. I'm researching the intervention options. There's so many different accounts and recommendations though. Long and short, everyone seems to agree - pick the best practitioner above all else (sounds expensive........).
Thanks again.
hank1953 anders08675
Posted
... Was told 18fr worked best with BPH patients...
Who told you this? I know many self cathers here and most of them, including myself, use 12 or 14fr. I tried size 18 before and it did work, but it was tight and stretching on my urethra and I didn't like it. Hank
anders08675 chris97588
Edited
A statlock is an self-adhesive pad with a plastic "snap" clip molded into the center of it.. It sticks to the thigh.
It holds down to the tube of the foley at the "Y" split, and secures it to the leg and reduces the movement of the catheter tube and any pulling that may happen. It is NOT a valve. Just a way to keep things from moving around.
anders08675 hank1953
Posted
The physician's assistant at one of the urologists said that about 18fr. I wonder if she said that because that was what was in the drawer...or it was easiest to push through a blockage. (???)
I started asking all the nurses, assistants and doctors who I was dealing with, if they ever had a catheter, and the answer was often... "no" (Except for a nurse who had one when she was pregnant). I asked a doctor if it was part of his training to better understand, if he had ever cath'ed himself.. he said "no".
After that, I had a laugh every time they told me to breathe, or exhale, or "point my toes" when they were changing an indwelling.... as if they knew what would help.
jimjames chris97588
Edited
You have the concept correct about retraining the bladder, but ideally you want to do that via self catherization (CIC) and not with a Foley and a bag. I understand they could not get the catheter in for CIC. Many nurses aren't that experienced, so you may need to ask for a catheter team to help. They will probably use a Coude (curved) tip and try a few different sizes. If they find the right combination, I think you will find it a lot more comfortable than the Foley.
I have been self cathing for over 10 years. I chose it over the surgical and procedural choices that were available. At first I found it difficult, but within a short time it became as routine and easy as brushing my teeth. I was able to rehab my bladder to a significant extent. I still sometimes self cath, but haven't had to for over a month now. My bladder isn't new, but a lot better than before I started CIC.
I haven't been on the site for awhile, but have some old threads on the topic, if you know how to search, or just ask questions here.
Jim
chris97588
Posted
Thanks Jim. I'll certainly discuss the self cath options (Coude and sizes etc.) with whoever I get to see. Also, I'll look back for your earlier posts on this topic. Cheers.