When I first got home from getting my suprapubic catheter put in, I had tons of questions.
But there was nobody to really answer them. Google searches helped some.
But I had SPECIFIC questions. I could only get answers if I called my Urology department and left a message for a nurse or doctor and hope they’d call me back. That didn’t always happen.
That doesn’t have to be the case for folks starting now (it’s Sep 1st, 2017 as I write this)!
There is a free hotline you can call to get answers to your catheter related questions. And you can get those questions answered by a Board Certified physician.
Just call this number: 833-MY-CATH-911 (833-692-2849).
The Surgical Drainage Awareness Foundation is offering this service to help people (like me) who get this extra body part, basically, and sent home with very little information. The hotline is there now to help folks who have a desperate need for information about their new reality.
THIS IS A VERY GOOD THING.
Read more about the new hotline in the article here: https://newswire.net/newsroom/pr/00097684-brand-new-free-hotline-available-for-catheter-patients.html
I keep getting UTI,S..IM ON SUPRA PUBIC CATh.please tell me how do I wear large cath bag with long pants.??do I bring tube up over waistband??? I only use leg bag if i leave home
Hi Barbara. Sorry to hear about the UTIs. If you haven’t already, I suggest reading these 2 posts from the site: Urinary Tract Infection and Catheter Care, Catheters And Urinary Tract Infections, and Tips For Avoiding UTI From Dr. Mario. As for wearing the leg bag with a suprapubic catheter, I wrote a little about that here: Tip For Wearing A Leg Bag With A Suprapubic Catheter.
The main thing is to try to keep things constantly moving in the right direction. So drink plenty of water and never let the bag get higher than the entry point in your abdomen such that things flow back INTO your bladder.
As for wearing a leg bag, my catheter tube went from a few inches below my belly button (I now have two :-P), and so below my waistline, and the end of the tube came down to about 3-4 inches below my crotch. So a pair of drawstring pants (the main type I wore with this thing) had the waistband ABOVE the spot where the tube entered my body. I then attached extra tubing form the leg bag to the end of the catheter, which was secured to my leg with a Grip-Lok (see my post Tip To Avoid Tearing Out Your Foley Catheter) sticker on my leg. Then I used the elastic bands on the top and bottom of the leg bag to secure it to my leg. I preferred wearing the bag low on my leg, ust above the ankle. But a lot of people like it up high above the knee. You can choose what is more convenient and comfortable to you.
I hope that helps!
Both of those articles were written in 2013. Do you have any updated opinions on what you talked about. I am 82 and am stuck with a urinary catheter for the rest if my life. Still active (go to the Y for exercise 6 days a week for several hours each day) and do volunteer work. I had a second opinion on my condition and it was either live with what I have or wear diapers and worry about linking, etc. I have chosen to keep the catheter. I have not had UTI yet and have been wearing this for about 9 months now. I have the catheter changed once a month and I clean out the bags once a week, I get two new leg bags and one new night bag once a month. I use a plug so I can take a good shower and have even wore it to do yard work without any side affects. Anything else I should be aware of?
Hi Walter. 2013 was the year I went through my 6 months of catheterization and urethroplasty. So that is when most of the articles were written. But I have not changed my thoughts on much of anything since then. One thing that wasn’t around back then, and which is still new enough that supplies seem to be limited, is the product called Freedom Belt. It sounds like you’ve got a good way to secure your cath in order to allow you to be active. So you may not need it. I wish I had one in 2013. You can learn more about it here: https://livingwithacatheter.com/get-active-freedom-belt/. One other thing that wasn’t available to me, but should be for you if you are in the US, is the Duette catheter. Its two balloons prevent the inlet holes from getting close to your bladder walls, and that eliminates the “pinch” inside that happens often with a standard Foley type catheter. You can learn more about the Duette here: https://livingwithacatheter.com/the-duette-a-better-catheter-than-the-foley/. Hope all that helps!
HI! I just got sent home from the hospital after three admission since January 2, 2018. i used to intermittent cath and have been switched to an indwelling with talk of a suprapubic or possible urinary diversion if this does not solve the problem. My issue is that I was having so much bleeding that I was clotting off my catheters and could not void without them. I now have a 24F three-way in place in case I need to go back for CBO again. I am flipping out. I was sent home only with bags. I have already spilled all over the bathroom multiple times I have no idea what to do with the tubing, how to wear my clothing, or how to clean the bags. It also hurts!! I just tried to call the line, but there wasn’t an answer. I will try again in a bit. Would you mind directing me to posts that may help?? Thank you!
I’m so sorry you’re having this hard a time!
I just reached out to Dr. Mario and he said the catheter line is up and they have been taking calls. He would like you to send me your name and phone number so he can call you! Awesome, huh? If you don’t want to put your phone number in a public comment, send it to my email at ken@livingwithacatheter.com. You can put it here, if you like, and I can delete it as soon as you tell me they’ve called you. either way.
Dianne – Here is a video on YouTube about changing a leg bag – https://youtu.be/mT7QM6jPrHg
when he talks about CathSecure, he is referring to a sticker catheter holder. I used (and recommend) the Gip-Lok (https://livingwithacatheter.com/grip-lok-adhesive-catheter-holders-now-available-order-individually/). I hope that helps with the bag issue.
As far as washing the bags – you only need to rinse them out. You’ll find others on the internet saying you need to use detergent or soap etc, but there is no evidence that this makes any difference in preventing UTIs.
Hope that helps.
I am the caregiver for my dad, who has only one leg and is in a wheelchair. He wears a catheter all the time, and when we go out, I thread his entire catheter bag down one leg, hanging the bag under his wheelchair on a metal X that allows it to swing freely. His tubing is long, so I clip the long part of it to his chair. (This technique of placing the bag down the pant leg was a revelation to me, as we were going to cut the waistband of his pants, direct the tubing out the side, and put in Velcro tabs to route the tube below his crotch!)
Yes! Though I am not confined to a wheelchair, I also was shown how to thread an extended tube down the length of my leg. In my case I strapped the bag to the outside of my leg just above the ankle. then using a restroom was a matter of putting my foot up on the toilet, lifting the bottom of my pants up, undoing the bottom strap, and emptying the bag into the toilet. I don’t know why more people don’t do it this way – ambulatory or not.
Thank you for this blog post. While it has been somewhat helpful, and the fact there is a Catheter hotline, has been encouraging. However, I have never been able to get through on the hotline. My husband of 45 years is a VERY healthy and fit man. No health problems other than BPH – which caused complete bladder output obstruction. I had to call 911 when he woke on January 31, 2020 in excruciating pain. He had seen a new Urologist on January 17, 2020 (we had recently relocated to the area) for what was a sign things were going downhill. Long story short, the ER put in a cath after draining over a liter of urine. Then back and forth with the Urologist. He had a cystoscopy on February 4, 2020 which confirmed the prostate had enlarged so much it caused the obstruction. We never received patient education on the cath – he landed back in the ER to have it flushed when it was clogged by a clot….Today, February 24, 2020, the urologist finally agreed to let him do a urine test to see if he could pee on his own. And then we learned, once the bladder has a cath doing it’s work, it doesn’t want to start working. I tried desperately to call the hotline as we waited for all the water to want to come out naturally. It never did…..so the cath was put back in. He sure enjoyed his 4 hours without it until it began to hurt for the need to be emptied.
Anyway, this email is to make an offer to anyone who wants a free pair of CUBU of MEDUIM to try. I will mail them to you. See here for the details: https://www.cubullc.com
They can’t be returned, so we lost close to $40. My husband was skeptical about them, but I begged him to try. He is very active, I mean he WAS very active until the cath. Gym workouts, beach walks, playing with our young grandsons, etc. He is 6’2″ and 185 pounds. He wears medium in most everything but these were too tight for him.
Now he feels he is housebound because it is so uncomfortable. We go to the Mayo Clinic Wednesday for a consultation so we know things will get better.
This is a public service as I see how much this community needs to help each other!
I’ll trust Ken to help us get together! We do have a public website and FaceBook page.
Thanks for your comment, Debbie! I’m so sorry for all the trouble your husband is going through! I just sent an email to the support folks at that hotline to see if it is even still working. If not, I’ll take it down. I’ll update this comment when I find out.
Also thanks for your offer to send the CUBU to someone. Very kind of you.
Best of luck on Wednesday at the Mayo clinic. It sounds like that might be the day you get answers and a solution to his problem.
We are back home after a great experience at the Urology Department, MAYO Clinic in Jacksonville. They are world class professionals. We FINALLY got the patient eduction we desperately needed.
As for the CUBU, if someone wants me to send it to them for free, they can click on my name in this thread and it takes you to our website. Sadly, they will have to make a comment for me to connect with them….but it can be innoculous like send me info on CUB. While you will see on our website, we are very transparent but this is one area my husband is not ready to publicly discuss. Maybe this will be his calling once he gets “repaired” and loses the cath. That is the plan and the surgeon just about guarantees it….
I still can’t get through to the Catheter hot line. It just goes into a busy signal. My husband still has some questions about his current discomfort and would love to talk to a professional.
We have continued to call the Catheter hot line. It continues to go into a busy signal. Have you heard back from them?
My 35 y/o son has a suprapubic catheter and has been experiencing some complications. Within the last 2 days a hole has opened up around the exit tube with smaller holes opening close by the tube. Today the black permanent cord has broken loose and a white tendon or muscle has been exposed within the hole around the tube/catheter. He has no fever, his urine is still flowing well but he is saying his stomach hurts. It was placed 2 weeks ago because He has disappearing penis syndrome and will have major surgery to correct it in September or October. What do I do?
I highly recommend taking him to a doctor – preferably the urology clinic/department that placed his catheter – as soon as possible. What you describe is not normal. I hope things get better soon!