Forum

Belly Bags for catheters - FANTASTIC!

Hi All,

I have had a suprapubic catheter for over a year and had an indwelling one before that and had to use conveens before that…you get the idea. I have always used leg bags with that lot, but in April this year my local Community Nurse (who changes my S/P catheter) told me about ‘Belly Bags’. They are similar to bum bags, but they fit on your belly using a belt. I have been using them ever since and they are FANTASTIC! They have a 2 litre capacity, whereas most leg bags for use during the day only have a 750 ml capacity. You don’t need to attach a leg bag to them over night and they only need to be replaced every 4 weeks instead of weekly. They empty using a simple valve which is similar to those on leg bags and are very discreet unless you use very tight clothing. I wear loose jogging bottoms most of the time and they don’t show up at all. I would imagine they are only going to be useful to people who can walk or can at least stand at a toilet for a few seconds as those of you who are wheelchair bound would need to use a jug or something similar to empty it. I just wish they had been available a few years ago. A tremendous and very simple device.

Hi, that all sounds really good and encouraging for anyone struggling with the leg bags.

Thanks for a positive post.

luv Pollx

So pleased you have posted this - as l have never understood why folks with a SPC put up with wearing all that tubing/straps and a drainage bag on their lower leg. There is no need for it. l have had an SPC for 18yrs - and soon sorted out the best and most discreet way of wearing it. l have the short length catheter - and direct drainage 600ml bag [manfred sauer’s] l thread a lace through the strap holes and just tie it around my waist - all tucked into tight knicks - and l can wear my tight jeans/short/dresses etc no problem. l do not even connect to a drainage stand at night - l find the 600ml quite enough. l could wear a bigger capacity bag if l wanted to - but l find the 600ml suits me.

The district nurses who come to change my cath - are very impressed and do ‘spread the word’. My way of wearing it means l have no weight dragging on the cath site - and no risk of tubing getting kinked. Also, for my self esteem and dignity - it is the best.

l only have to open top button on jeans to get the tap out and empty.

Have you seen the SPC site could Streetsie - based in USA - l often answer questions on there - and also l have learned a lot. For bladder health it is - apparently best not to ‘empty out’ completely as this sucks the bladder wall in and can cause irritation and risk of uti’s. lt is best to wear a flip flow valve - which you can connect to the bag - and empty into bag regularly - but try to leave about 100ml still in bladder -this you will just have to guess. You know if you have emptied out completely as you can feel a contraction of the bladder. Also, drink regularly but only small amounts - don’t go glugging down a pint of water in one go. This acts too much - builds up pressure and then acts like a syphon when you empty and draws the bladder walls in.

See even after all these years of spc - l am still finding tips. And this is info that the ‘professional’ do not understand - l think it is only us who live with it 24/7 who understand.

The silvertipped caths are excellent if you are inclined to get the occasional uti. Keep away from the latex ones - they really upset the bladder.

For anyone with bladder incontinence l think the spc is the answer [try ldn first - as this is brilliant at giving back bladder control] With Botox - you still have to lSC - and with lSC you are at more risk of uti’s and damage to the uretha.

Do look at Streetsie - l think l just googled SPC - when l first came upon it. They are folk with lots of disabilities - some have MS - but all in the same boat with incontinence - or so disabled it is difficult for them to actually get on to a loo.

F.

Hi, I’m so happy to have found this site. I have urethral syndrome - my urethra goes into spasm and sometimes causes intense pain but the main problem is that I want to go to the loo all the time. My urologist wants to pop in a spc next Thursday 6th December to give my urethra a rest and I’m extremely anxious. I did have one put in this August but panicked about retention - which I’ve had in the past and had it taken out after 5 weeks. I started trying to go for a wee normally after just to weeks of having it popped in so my urethral syndrome came back.

So, you veterans of spc any advice would be fantastic.

Ask any questions.

Thanks…

Hello Ursula

It may be that you have a similar problem to me. Which took a very long time to sort out what it was and what might help.

My urethra just nags at me all the time. It tells me that it wants to wee, nonstop. And it is a liar. Many times, it’s been assumed that I have bladder spasms, but I don’t. That was checked out by urology nurses. I’ve been prescribed all sorts of drugs to help with urgency (Oxybutinin, Vesicare, Betmiga) but a) none helped and b) side effects from two of them gave me nasty problems.

I had a course of Cystistat instillations to extra line the bladder, but basically it didn’t help because it wasn’t needed.

I’ve been using intermittent self catheterisation for about 7 years, because I mostly (if ever) can’t even start to empty my bladder, let alone completely.

I ended up having a supra pubic catheter about 18 months ago. And the words, ‘give your urethra a rest’ were used to me too. It didn’t solve my problem of feeling like I constantly want to wee. It also gave me UTIs that I didn’t tend to get with ISC. Plus a wound infection. So it felt like it didn’t help the basic problem and in fact made it worse with infections. Eventually I asked the urologist to remove the SPC. She took it out, I went back to ISC, when I’d cleared up the existing infection, I never looked back.

That was 14 months ago. I’ve been using ISC (again) ever since. I’ve had not infections. I still live with the feeling like I need to wee all the time. And I don’t think I’m going to get rid of that. It’s been described to me as a kind of neuropathic pain.

I don’t have an answer for you. All I can do is tell you my experience.

(Also, maybe start a New Thread next time, it helps to keep your issue away from the one that started the old thread.)

But welcome to the forum, you’ll find us a friendly crowd. Anything that’s on your mind, ask and someone may have a view.

Sue

Hi Sue,

Thank you so much for replying so quickly yes it does sound like we’re in the same boat!

My problems started 37 years ago but I’ve had years of no problems the last serious 10 years ago which lasted about 3 months but no where as severe as this time. Since then I’ve had days and indeed just hours of symptoms which suddenly just disappear like turning a light switch on.

It came out of nowhere this February Friday fine then Saturday morning go to the loo and it starts, but like you no obvious cause, my bladder is healthy, my urologist did a cystoscopy and biopsy.

I’ve also tried cystistat and vesicare which of course did nothing.

I had steroids injected into my urethra in July this year which caused great pain at first but things calmed down, then botox in the urethra with an spc in August.

My urethral symptoms did calm down with the spc but stupidly I didn’t leave it in long enough as mentioned as I worried about retention ha ha which I’ve had since and started trying to wee normally after only two weeks of it being inserted hence the symptoms came back.

Previously to all the procedures this year I’ve had days with no symptoms then one or two horrendous days to going back to normal.

Since the botox it’s gone from horrible pain with the need to wee all the time to terrible cystitis pain and now just the need to go all the time ranging from awful to not so bad. I also have the odd awful spasm which lasts about 10 mins, I take tramadol if the pain gets really bad.

I’m due to go on holiday next march, the new man in my life is taking me to the Maldives and I want to swim and snorkle in the sea but I’m so worried about infection being so far away.

It is very slowly improving, but again like you I have to use isc, sometimes I have complete retention to mild i. e 50ml.

Just don’t know what to do as I’ve been off sick since August.

Having an spc is so intrusive but it’s all my consultant can come up with.

Can’t tell you how good it is finding a fellow sufferer, how do you cope?

Oh how do I start a new thread!

Thank you so much for listening

My real name is Anne, I call my urethra ursula the unruly urethra!

Hello Anne

Yes, it’s great (although horrible) to come across someone with a similar problem. I really don’t think there are that many of us about with this sort of problem.

I’ve been completely infection free since removal of the SPC last September. But I check it all the time (like at least twice a week) because it so often ‘feels like’ a UTI. Being able to check your own wee for infection is really useful. I’ll post the details of how you do it if you want. That way, you’d know if you had an infection while away, and if you take antibiotics with you (ask your GP for a prescription), at least the kind that will treat an e.coli infection (most common), you can start the antibiotics ASAP.

Although it’s a bind and can be awkward when you’re out of the house, I find ISC to be better than SPC. I know it’s great not having to get up at night, and not needing to find a loo when out, but honestly I had so many infections, including a wound infection, and I still had the feeling in my urethra all the poxy time anyway. And it does make a difference with clothes!

And you’d find the Maldives so much more difficult (swimming and clothes that is!) with an SPC. How lovely to have a nice man taking you to the Maldives.

The way to start a new thread is just to hit the New Thread button above the list of existing threads. You give your thread a relevant title and post whatever you feel.

All the best for you and Ursula!

Sue

Hello everyone,

I can’t tell you how relieved I am to have come across this page where you talk about catheters. I know it sounds a bit weird but you obviously all understand and have experienced many of the things that I am going through too.

I was doing ISC but after being taken into hospital following a major relapse an IDC was put in, as I am mainly wheelchair bound and immobile now, and getting to the toilet is very difficult for me. Last time I saw my Urologist he put forward the supra pubic idea to me, and I am now on the waiting list to have that done. I don’t only struggle with the inconvenience of a leg bag, but also having the catheter tube coming out between my legs and getting caught up in clothing. Perhaps it’s me being clumsy, but I do find it very uncomfortable, and I long to be able to wear normal knickers again!

I would really welcome any advice and tips on how to best deal with the SPC, and also reassurance that I am doing the best thing for my situation. I look forward to speaking to you soon.

Jackie

Hello Jackie

I have absolutely no problem discussing bladder or bowel issues. They are the bane of so many MSers lives. If we need to learn, this is one of the few places we can get real time experiential knowledge.

I should think that if you are having trouble getting onto the loo, some kind of indwelling catheter would be sensible. And clearly an SPC is preferable to a Foley IDC, you’d find that the urethra would be sore and uncomfortable if you were to have no choice but to live with a Foley type. Not to mention catching it on pants etc.

An SPC is a solution to this, but I’ve never actually tried a belly bag, although many people find them wonderful. I just stuck with a leg bag, despite the drawbacks. Another option is a ‘flip-flo’, which is a kind of tap. Your urine stays in the bladder until you get the urge to go, then you open the flip-flo valve into a toilet or receptacle. I decided I was going to use one of these from the start and only realised half way home from the hospital that they won’t work until your catheter wound has healed a bit. (Leakage!) Another downside would be if you have bladder spasms, you might find you ‘bypass’ the catheter and leak through your urethra (this can happen anyway).

I imagine that most people at least start out with a leg bag when they have an SPC and possibly try out a belly bag later on.

I had trouble with my SPC, I was told later that a level of infection may always be present with an SPC simply because you have a foreign object within the bladder. I didn’t know this and had several infections. Given that I always have the sensation of having an infection (see the previous conversation between Ursula/Anne and me), it just ended up feeling too uncomfortable. How would I ever know I had a ‘real’ UTI? I also had a nasty little wound infection.

But, I still had the option of going back to ISC as I maybe a wheelchair user, but can transfer onto the loo OK.

If you have trouble with transfers Jackie, then I should think an SPC is a definite step forward.

The operation is done under general anaesthetic, you’re usually in hospital for a couple of days after the op. The catheter tube comes out of your abdomen a few inches below the belly button. It’s normal to keep a dressing on the wound at first, some people manage to stop dressing it after a while - I didn’t. The wound doesn’t hurt at all (or it didn’t me). You generally use a leg bag for the day and a night bag which holds more liquid overnight. As this thread started out, some people do swap after a while to a belly bag. One of the early posts suggested that a belly bag is more suitable for people who can walk and I can see why. Imagine as you’re sat in your chair, you also have a collection bag wrapped around your midriff, it could be really awkward to dress and to empty it. It might also be quite uncomfortable, but it’s worth giving it a go.

Now that I actually understand a bit more about why you might have an ongoing mild infection issue with an SPC, and also knowing now that I’m likely to be stuck with the urethral issues I have, I’d be prepared if my mobility got worse to have another SPC.

If there’s any other information that I can help with Jackie, just ask.

Sue

1 Like

Hi Jackie,

I have had my SPC 10 months now, previously had an UIC which was a constant prob’ I was bothering my local community nurses am/pm every 9 days to replace it! - as I had UIC blockages etc… Now my SPC seems to be ok. I take Vesticare,

I just use a pop it in my knickers & void in a 1pt empty milk bottle! I also connect to a Leg Bag if necessary, hitching up to a night bag at night. I have SPMS & use one of my numerous mobility vehicles for transportation.

what ever this ms business really stinks!

Dizzy.

Hi ladies, Sue you have been so helpful. I’m going to go ahead with having an spc next Thursday. Fortunately having had 2 spc’s in the past, I’ve managed to avoid infection total weeks of an spc around 8. The last spc did help my urethral syndrome I just didn’t like it from a body image point of view. I need to man up given what you girls have to cope with, I only have urethral syndrome and no other physical problems. I’ll let you know how I get on post op which I hope will help anyone else considering a spc. I live on my own as my children have flown the nest, one working and the other at uni, I am divorced. I do have a new man in my life who is 100% supportive and fine about me having a spc. Ask any questions before and after the op. Best wishes girls love Anne aka ursula