suprapubic catheter advice please.

GREETINGS WENDY—FIRST THINGS FIRST—THE. SWELLING WILL GO DOWN-SECOND THE PAIN U R ENCOUNTERING R SPASMS THESE CAN BE ADDRESSED WITH MEDICATION- THE LOCATION IS CORRECT I HAVE EXPERIENCED THE SAME ISSUES-LAST BUT NOT LEAST THEY SHOULD HAVE HAD AN EXPERCIENCED INDIVIDUAL INSERT THE SP -DONT DESPAIR  THIS COMMUNITY WILL SUPPORT U IN UR JOURNEY ROBERT

Hi Wendy, I am so sorry you are going through this first of all and I am just curious why did you let a Dr. with no experience perform that procedure on you, never have any Dr. perform a procedure unless you know they are experienced. 1st question yes it is normal mine is about maybe 1.5 - 2 inches below my navel, The bruising is from when the Dr. is inserting the supra pubic catheter he has to use a tool called ( I think a sounding tool although not sure) and with the tool he will go up your urethra into your bladder and pokes it on the inside of the outer wall of the bladder until he sees the tool protruding from your abdomen he then goes and cuts a slit or a hole ( stoma) where the tool protrudes. The Dr. may have been pushing the tool around too much inside your bladder in which might be causing your discomfort. Your third question is a bit puzzling are you urinating through your catheter or normally? What most like is happening is when your bladder senses that it is a little full it will contract to push out urine and the bladder does not like anything foreign in it so it is trying push out the catheter as well and that is most likely causing your pain because your bladder is spasm to get rid of catheter. I know when I had mine done the head of my you know would hurt. You may want to ask your Dr. for some pain pills and some anti spasm pills. I am also guessing here is I think your bladder may have over extended itself causing to stretch or even tear the muscle of the bladder and once that happens your bladder is done it will not work properly you might get some control back but time will tell. I know when it happened to me the nurse was giving me a urine test where they pump water into your bladder from your urethra to  measure the bladder pressure and how soon it will start to empty, during my test the nurse was injecting the water too fast into my bladder and soon as it hit a point it leveled me I fell out of the chair and curled up like a baby the pain was that intense. anyway I hope this helps please feel free to contact me if you want to talk more

Mike

Thank you I will message you later with more details

Kind regards

Thank you for your kind words and advice.

My problem just happened over one weekend nothing unusual to begin with just a slow down of urination which I put down to cold wheathery.

But it got worse to the point I thought my bladder was going to burst.

I was told if I had waited any longer it might have done.

And I was told I was lucky not to have damaged my kidneys which I must admit do play up more now.

Anyway getting back to the spc I was called in on an cancellation I was ment to go down on the Wednesday but they then cancelled me out due to emergency.

So I had been there from 7.30 till 4.30 and nothing.

They kept saying they where waiting for a bed.

Well when the bed came up that's when they got the emergency and cancelled.

I stayed over night so they can put me in the next day which they did.

He lady who performed the pursuidure was a qualified surgeon but just hadn't done this before .

So by this point I just wanted it done and as she was a qualified surgeon I don't think she could go wrong.

And my attitude was we all got to start somewhere.

I'm very easy going about all this but I just wanted to ask real people with the real problem how they copt and if what I described was normal.

Thank you for taking the time.to read and coments both you Robert and alan.

Hi Wendy

I had a super pubic cather put in 3 weeks ago . I am still in discomfort it hurts when I sit up straight and when I turn on my side's it is constantly uncomfortable will this end

Thank you in advance

Mary Devereux

Hi Mary

I was in discomfort for about a month continuous and still a bit of the time.

I find it hard to bend for a certain amount of time as it becomes kind of stingy around the wound.

As for lying down this will soon settle as I can now lay on my side (side fitted) like I use to.

You will at the moment find sitting laying uncomfortable as you are using the musles around the catheter.

When you sit sort of slouch as this take the pressure off.

When you lay I found putting a pillow between my legs helped again taking the presure off.

I've had mine since October last

And I'm back to my job which is physical and I go cycling and jogging.

Don't get me wrong I have days which can be bad but most are fine

Also ask your doctor for some lubrication to put round wounder as it will stop it becoming sticky.

Secondly ask them to maybe change the catheter for a brown silicone as this helped me with the spasms.

Anything else please don't hesitate to ask

And all the best Mary x

Also I should have said

Wear tighter fitting knickers as this will help keep it in place more.

But wear loose clothes as if it's to tight it will irritate.

I wore tracks for the first two to three months now I can wear most of my old clothes unless they are slightly tight around this area.

Also I have a flip flow so I have no bag.

Which as a woman I find more manageable and less embarrasin .

Again good luck it will get better but with out scaring you it might hurt again when they change it for the 12 weeks change .

Xx

Wendy

Thank you so much for all your information you have answered all my questions and more I am finding it very hard emotionally to deal with as it happened so fast.

I keep thinking I am going to get it out .but you have helped me greatly

Kind regards

Mary

Thats fine

Mine happened within two days nothing before just stoped over the weekend. Was in hospital by the Tuesday.

Remember to drink plenty of water

I tend to find drinks that are high in acid content can irritate.

I drink black coffee (not good I know)

But I always have a bottle of waterabout 10 min after just to help dilute it.

Good luck and bear with it xx

MORNING-DONT DISPAIR-LIKE MOST LARGE CHANGES IN OUR LIVES IT TAKES GETTING USE TO-ACCEPTANCE WITH OUT SURRENDER IS THE KEY KEEP ON KEEPING ON VIEW IT AS A CHALLENGE TO BE OVERCOME -U CAN DO THIS LOOK AT THE SPC COMMUNITY AS UR COACHES AND TEAM MEMBERS  WE R HERE FOR U -U R NOT ALONE -GOD BLESS ROBERT J

Hi Wendy

Can I ask you how long does the site take to heal over I am 7 weeks and it is still weepy and it looks like s bit needs to be corterised accordy to the nurse that's what is causing the soreness.

Also when you have the flip flow value on do you feel pressure in your bladder I am going on holidays soon and am trying to figure out how to manage the bag as when I use the plug for showers it causes air or pressure I am not sure any suggestions

Regards

Marydev

Hi Mary

Sorry for delay

I've had nine since October (end) and it's not until I had the second change I noticed it clearing up. So what that 4 months in.

When I had it changed last time the lady was so much better and she numbed he area so hardly felt anything.

Don't get me wrong it still weeps slightly and if I over do it I get the spasms. Nothing co odromol doesn't sort out.

As for the flip yes I get the sensation to go but not till nearly the last minute or two but just enough time for me to hold and get to toilet. Sometimes when I hold though the tube stops half way through weeing so I just have to shake it a bit then it continues to flow.

I have a bag at night and sometimes I have to take it out as I always get that pulling sensation in my you know what area and it's very uncomfortable. where as if I don't have the bag at night I forget the catheter is there until i need the loo 😊

I rather not have a bag as it hinders you in so many ways where if you have the flip flow you can tuck it up into knickers and no one's the wiser.

Ask for the flip and if you don't like it just remove it and continue as before

Hope I've answered you question

Anything else let me know x

Wendy can you tell me exactly what a flip is? My catherter goes directly into my bladder . I tape it to my skin to hold it securely and then I use 4x4 gauze under it to keep it from leaking. It works well. I just empty my bag several times a day. I drink close to 3 liters of liquid a day to keep flushed. I’ve never heard the term flip before. Am interested in learning what it is. Thanks so much

Hi sue

Just Google

catheter flop flow valve

And look under image it will show you.

You have this instead of a bag.

It has to ways open and shut

Open to urinate

Shut to stop it x

Hi again

Sorry ment to say Google

Flip flow valve

And as for water I probly drink double to you as I can't bear the thought of another infection x

Will check this out! Thanks again. That is wonderful you can drink that much fluid... about how much more? Am trying so hard to not get infection. Urine always comes up in test with signs of uti but that is from being colonized. Just get so tired of worry about it. My urologist doesn’t want me on profilatic s and I agree. I also take 500mg Cranberry in capsule form and 500mg Vit C in pill form 3x’s daily. That seems to help also. Your thoughts on this please.

Hi there mary

Is Profilatic is a medication ?

If so I wouldnd taken anything unless in dir needs antibiotics is the most I have had since getting this problem.

I drink mainly water or very weak juice to liven up the water 😊

Cranberry juice as well 🖒

I find staying away from certain high acid food or drink helps especially alcohol. I don't drink but at xmas had a glass of wine (never again).

To he honest Mary the way I look on this personaly for me is

I can still walk and talk and function normal so I just get on with it I can't change nothing and neither can the doctors so far.

I know its hard I've been depressed (husband thinks that what caused my retention in the first place) .

But we must be thank full for small merses.

If you need someone to talk to other than family of doc someone who is in same situtacion email me

and I will give you my mob number and you can text me privately.

But keep doing what your doing and you should be able to keep on top of it.

Xxxx

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Thanks Wendy I agree we need to keep positive and I am a Believer and I try and turn things over to God. 

Profilatic (sp) is when you take an antibiotic prescribed by doctor once a day to keep uti under control . A small dose.

My superpubic does not stick out... it is flush with my skin. Can’t remember right now what they call it. But there is nothing to put anything on to. Do you know what I mean? That is why I can see the balloon when it works up to the surface of the opening. I get along fine with it and doctor said it didn’t hurt so guess it’s fine. 

Ok thanks for answering questions and giving insight!

Hi Wendy

Ad always you hsve the answer my qustions.

We are going on holidays soon and the nurse has said I cannot go swimming if the would isn't healed so that's disappointing.

Also I am going to start practicing with the flip flow but am concerned as I nearly always have the urgency and discomfort in the lady area still even after the botox and when I take off the bag for my shower and plug it for the shower I get back flow .and more discomfort when putting the bag back on and it can linger for hourx

As it seems to flow the whole time in to the bag where will it go when the flip flow is on .

As I am not back to the urologist until the end of April for it's first change I appreciate any advice that you can give me

Sincerely

Mary dev

Hi

It's difficult to remain positive about it as I can't get my head around it dressing differently and seeing it on my leg going to bed with it on

I havnt let my husband see the site and the am dreading the book day next month I can't see to come to terms with it.

Vain I know may be if the botox had fixed the urgency and bladder spasms i might think differently but they havnt it's 7 weeks in will it always be like this I am so close to having it removed.

Thanks again

Mary dev

Hi Mary

I find if a have a bag at night I always get that tugging feeling you are describing this is because the bladder is always emptying and not having chance to fill up like it is ment too. This causing the the catheter to always be working ie draining your blader.

With the flip flow your bladder has chance to store the fluid like it is ment to thus Thus catheter not always pulling to empty.

I think best way to explain is having a balloon full of water with like a small pea floating about inside.

When balloon full pea floats.

When you un knot the balloon and let the water out the pea drops to the opening and try to get out. So even if I filled the balloon up from the top and left bottom open the pea would stay by the opening trying to escape ie the tugging sensation but if I close the opening and fill balloon from top again the pea would float again.

Does that kind of make senses

So by having the flip flow your bladder feels up as normal the balloon floats when you get the urge to go you go as normal and the balloon starts to block hole as you release and then the procedure starts all over again.

Where as with the bag the catheter is always trying to drain even with the smallest amount of urine and the balloon always trying to block.

Xx

I know how you feel

I didn't let my husband see and I was always paranoid about what clothes to wear as I had the other catheter at first the one from below.

But now after having it for a fair bit I'm more open my daughter who ten knows about it and my husband and I continue to have an active life (😉

I was very depressed at first use to cry when putting on certain things.

But now it's a (sp) and I have flip flow you would never you I had this problem.

And you are not suppose to get it wet fort the first 6 weeks but I only went two. I even went and sat in the sea with it. Covered up mind you.

Just show your husband let him see and I'm sure he will be very understanding and it will help him understand more.

Also I am thinking of having mine out and doing self catheterisation whi ch is a hole new ball game

Xx

Hi Wendy

Thank you for your kindness,I have another question to ask you ,lately I find eating seems to put pressure on my bladder it's like I can't eat any more and it is very uncomfortable .

My bladder seems to be very sensitive and I am unsure if it would have happened because of the MS it had started before the spc or is it because of the spc .

Thanks

Marydev

Hi Mary

Sorry I can't really answer that one as I never had this problem

It could be due to the amount you are drinking as you are told you need to keep it flushed through and when I drink loads I don't want to eat as like you say I feel full.

It could also be what you are eating might be irritating the bladder like food that containd more acid (fruit extra).

If you feeling quite full try eating seeds or nuts as they not only give you lots of goodness they won't make you feel blotted and you will also feel quite satisfied in the hunger area.

I eat l yogurts, pasta, apples, nuts and bananas as these are high in protain and dont blot you out so much but I also have a normal diet as nomal as can be.

But I have found drinking so much water has changed my taste buds and I tend to not like the taste of things that I once did

Sorry I cant answer your question but to be honest the spc does tend to make your body feel different and maybe this is just one of the affects you are feeling xx

Thanks Wendy it certainly dost get any easier I hope it's working out for you .

Thanks for your patience

Mary

Hi Wendy

Can I ask you another question please when you got your cather changed the first time did it hurt and for how long, was it like getting it in the first time all over again?

We are going on a sun hoilday 3 days after it is due to be changed it will be in 12 weeks at that stage and my primary care nurse wants it changed before we go.

I am up in a heap any advise would be welcome.

Kind regards

Mary dev

Hi Mary

I had mine done at eight weeks even though it should be 12.

And yes it hurt like it did the first time and took a few weeks to settle down.

The best thing I can surgest is to ask if they can put some flush through after she takes it out (can't think what it's called but it's to numb the area ) that's what I had the second time round and it was much better.

And yes I would get it changed before hand as you know your nice and fresh also remember to ask about the brown catheter it some much softer x

Let me know how you get on xx

Hi Wendy

I need your advise again,I got the cather changed it is a silicone one and I am finding it difficult it constantly feels like it's sitting low down in my private area and very uncomfortable I have tried turning it and wiggled it no improvement if I hit off of the tubing on my leg its like it shifts inside of me and hurts.first thing in the morning it feels like I am holding urine in my private area

I don't understand why this is happening always thought I had a strong pain threshold but I feel like a wimp now is any of this familiar to you

Thanks

Mary