www.incontinentsupport.org

Hi Lynnan

I also like the Belly Bag it is my doctor that don’t like them.
The Belly Bag is the aliment way to conceal incontinence and they are comfortable also.

I also wear pull ups a lot but not for catheter leakage I have some bowel problems that are 99% controlled.
Six months ago I had hemorrhoids removed the most painful operation I ever had. I am on some strong pain medication for neuropathy like Fentanyl, Tylenol #3, Celebrex and valium and nothing would touch that pain. It lasted for about two weeks I thought I would die. I was having trouble with bowel before I had the operation but after it I became totally numb no feeling what so ever. I don’t have any more problems now than before except now I cannot feel if something comes out so the pull ups.

If I got it right the catheter should be sized to fit the urethra so it will not bounce around causing sores and not too tight to stretch the urethra. Like I said in a past post I started with a 14fr all the way to a 20fr then back to an 18fr I had no leakage from anyone of them. I was also told it is normal for some to have small leaks around the catheter.
If everything is flowing correctly leakage should be minimal.
My doctor likes the biggest catheter that will fit without stretching because less chance of blockage.

When I used a 14fr to a 16fr I was to irrigate twice a day. When we went to a 20fr only irrigate if necessary and now I back to an 18fr I still was not told to irrigate unless it gets plugged and to date I have not had to.

You are using the rubber catheters if I got it right it is amber or off white in color. That was the first catheters I used also. They are more flexible than the silicon catheters and I think a lot more comfortable and cause less sores also. The silicon catheters are supposed to help with infections and now with silver coting they are supposed to really help with infections. I started to use the all silicon catheters three months ago with the last two months using the all silicone with silver coting and have been infection free knock on wood.

I seldom get spasms of the bladder but my doctor put me on Ditropan anyhow I guess it works and I don’t want to rock the boat.

You said you used a leg bag and the straps bothered you. Try and get leg bag straps by Bard. They are padded and are an inch and a quarter wide very comfortable.

What lubricant are you using?

Like I said I was told to use Neosporin and I have with no problems so far.
If you read the info on the package the catheter comes in it says don’t use anything petroleum base near the catheter if it gets to the balloon it could cause it to rupture. I was surprised to see the same warning on the all silicon catheter. I though silicon nothing would bother it. I am still using Neosporin on it; it helps with skin irritation.

2lyle



 

Sandy

Just being incontinent is hard on us.

Your type of incontinence is just as difficult to deal with as ours and maybe even more do to the stigma of diapers.
When I started to experience incontinences it was similar to yours but over the years it got worse.
Back when I first started incontinence cloth diapers and rubber pants were all we had no disposables.

So I have been on all sides of this and can feel for everyone. Being incontinent is not easy to live with.

I too am very thankful for having a wonderful wife who has stood behind me all these years. I guess Lynnan and you and myself have a lot to be thankful for.

2lyle

Hi 2lyle,
Sorry to hear about your colon issues,and the surgery you had to have,oh my,I know I will sure try to avoid that!
I have colon issues too,but constipation,which I have had a lifetime,but now with the medications I need to take,it only makes it worse,so both Drs put me on daily laxatives,(Mirolax)and enemas when needed.I have since got off the Mirolax and using a herbal laxative that has been working well.

My urologist seems stuck in the mud about sizes as he has refused to change it so far to anything bigger,and I think next month when I'm there will discussed,as I agree with you about this.

Currently I'm using a Silkolatex Rusch Gold,which has been very comfortable,but I will probably get a silicon next week at my cath change,as my nurse called and told me that is what they use mostly.So will see how that goes.

Not sure why I'm still getting bladder spasms,but it could be from the loose fitting 16fr too.

Will look into the Bard leg bags,heck I might have one,as I got so many of them!

I'm just using a sterile lubricant,cant even think of the brand,as its something I bought in bulk,all I know the tubes are sterile.
I will ask about Neosporin,as that might help too.Although I'm tolerating the catheter much better now I guess over time.
Lynnan

Hi Lynnan

Bowel problems were one of the first problems I had. Back then it was continents diarrhea.
Now I am like you I am constipated and I also take Miralax and use enemas but since my operation I am fairly normal. When I say normal it is tolerable and 99% under control.
All my problems are attributed to the neuropathy I have.

Most people that use a Foley catheter use between 14fr to 18fr.
But the bigger the catheter the less chance it will plug. Like I said in my last post when I used the smaller catheters I irrigated them daily.
When I had a 20fr in my doctor told me I may get bladder spasms with the bigger catheter here again I didn’t but then I have little feeling and my bladder is flaccid.

The catheter you are using is a silicon coted rubber catheter that is the catheters I used when this all started. The only reason I was prescribed the all silicon catheters is I was getting infections every month. The all silicon silver coted catheter cost a little more about $10 to $15. I think that is why they are not used more.

But like I said in my last post I don’t think they are as comfortable as the rubber catheters. I still find then to be fairly comfortable I will see over time.

I bet the lubricant you are using is Surgilub. It is a water base jelly like KY Jelly.
It works except water takes it off and if you are leaking well.
Neosporin is petroleum base salve water will not affect it but the drawback it can attack your catheter and if it gets to the balloon it could rupture it.

The straps I use are by Bard and the part numbers are
Leg Bag Straps Small / Velcro (9” - 13” ) 162110
Leg Bag Straps Medium / Velcro (13” - 20” ) 162210
Leg Bag Straps Large / Velcro ( 20” – 27” ) 162310
I use one Small and one Medium and they are reusable for several bags they can be washed many times.

I also use a strap to bold the tubing to my leg
Dale Hold-n place H8410

I hope this helps. They do make things much more comfortable.
If I could I would use the Belly Bag but I have to go along with my urologist not that I agree with him but I respect him.
I am happy with this setup it is comfortable and I can function fairly normal.

2lyle

Hi 2lyle,
Yes it seems we were both plagued with some of the same basic issues.I really dont like taking Mirolax,as it has and forgive my spelling ethyle glycol,,something,and I know that is the same thing in Antifreeze! Yes,my Dr says its safe,but I just didnt like it,and when you must take this daily,well you know.

Yes,agree on the size of the catheter,I really think 18fr would really help or 20fr,but I did drink lots of water yesterday,in fact probably about what I'm suppose too,and did ok last night.Although I emptied about 1500ml,this morning,my Urologist wants me to be down around 500ml,he feels my bladder is working all night as I dont sleep well,so my bladder keep working thinking its still the work day! Anyway,I agree on the special coated catheters,and if I start having infections,will need to look at that further.

I go in for a cath change next week,(not sure why I cant do it)and the nurse told me that the Dr (GP) likes using silicon,so will try them again,I have tried them once and found them very uncomfortable,yes,to stiff for me,but will see

Yes it was Surgilube I did use then they ran out of it and substituted for another brand called E-Z lubricating jelly,which works just as good,maybe even better.
Thanks for the information on the Bard straps,will look and see if I have them,as it appears I will be getting a leg bag at my next change.
Guess its good to talk,and find out what you use.You have already made me feel better.
Lynnan

Hi Lynnan

Miralax if I take it every day I then get uncountable diarrhea and that is something I can’t live with. So I take it only if constipation last for more than seven days. What I have been doing is eat more fruit a lot of it and it helps but if overdone I will also get diarrhea. So it is a balance act and not always predictable.
Like I said it is 99% under control wish it was 100% and if I mess it is always somewhere embarrassing.

I called Bard support this morning and talked with a nurse. I asked is there anything I can do to make the all silicon catheter as comfortable as the rubber catheter answer: no the silicon catheter is stiffer harder going in and will cause sores more. She also said use lube on it and keep it clean and it should be OK.
I then asked about Neosporin being used answer: with the silicon catheter that is OK and it will help with infections. We then talked about infections and I went to the Bard Silver coted catheter I also told her I had infections almost every month and since going to the all silicone silver coated catheter I been infection free answer: yes it is the best way to fight infections and a lot of people have problems with infections.
She then asked if the silicon catheter was that uncomfortable my answer: no it is comfortable but the rubber catheters are more comfortable and I look for all the comfort I can get.

So I don’t know if I learned anything or not I knew most of this stuff but it was good to get a second opinion on using Neosporin on the silicon catheters.

I agree with you on catheter sizing to me the 20fr was to big but then when I had a 20fr put in it was the all silicon so was it too big or the stiffer catheter. When I went back to the 18fr it felt better but then the sores and it was also the all silicon.
If the silicon silver coated catheter continues keeping me infection free I will stay with them.
I like the rubber catheter much better for comfort.

My doctor also does not want high output of urine while sleeping but then he wants the urine to be light color or clear can’t have it both ways.

I also wish my doctor or one of his nurses was still changing my catheter. I am doing it but it is very hard for me but I got it done. Because I was having a hard time cathing myself is the reason we stopped self cathing in the first place.

I used three different silicon catheters for a month each one Bard two Rochester three Kendal. The Kendal catheters are softer and the most comfortable but have a tendency to kink the Rochester I can’t remember but the Bard it the heaviest and stiffest of them all and less comfortable. Bard from all the reading I did are supposed to be the best I hope so because the medical supply store I get my supplies at went out of their way to get them in for me.
2lyle

Hi 2lyle,

If I took Mirolax everyday,I would go most days,and normally no loose tummy.So I know I must drink more water and take something daily.Both Drs love oral laxatives but I know and my nurse even said with enemas you can caught up when needed,so that is what is done.I cannot go one day without going,and feel awful,so wonder how you can do it.

Going to ask my GP about Neosporin,and see what he says.Sounds like it works good,but agree it must be with silicon catheters.Currently I have a rubber one in as mentioned,but next week I was told I will get a silicon.

How are we suppose to win on night voids? If I dont drink enough water at bedtime,my catheter will plug then I'm up anyway to irrigate it.My Urologist has been talking to me about trying a drug called Desmopressin,have you ever had to take that? I really dont want to take any more medication,I know I'm struggling with sleep now,but what happens with this,then the catheter plugs,,,yuk

I know he is going (urologist) run me through the mill again with tests next month,,or get started,it never ends.
Lynnan

Lynnan

I don’t know how I can go for several days of constipation even from a young age I was not regular.
I do see a Gastrologists and have for many years and he always ask the same question. Just about everything he has tried either I have chronic diarrhea or chronic constipation. I use everything but not until several days have passed.
It could also be my neuropathy I have little to no feeling.

It will be interesting to see if the all silicone catheter is better, worse or the same for you.
Do you know there is a silver coted rubber catheter also?

Bard order no. for Rubber catheter 0165SI18
Bard order no. for Silicone Catheter 1758SI18

But if Bard makes them I think other catheter company’s do also it is Bard is what I know the most about.

I still like the silicone catheter for the most part.

Do you ever get any blood in the catheter or show up in the bag?

Last month I got quite a lot of blood enough to make 400ml of urine turn red it only lasted for 10min or so it happened twice that month.
This month I had off color urine and maybe some blood.
For the most part my urine is clear showing no signs of infections and I feel pretty good.

Desmopressin is one drug I have not been on.
It is used to stop bedwetting which means less urine being produced. With less urine more chance of a plugged catheter.

I am on so much medication it’s not funny and I question everything when prescribed something new med or stopping a current drug I on now.

You are right most Doctors will keep sending you through test after test maby they are concern or they just want the money.
People with out insurance do they get sent for testing?

2lyle

Hi 2lyle,
That seems like a long time to be constipated,my urologist was adament about mine,he told me in no uncertain terms,do not get constipated! So I struggle with this daily.As mentioned my GP wants to send me to a Gastroentrologist,but I just dont think I can keep up with all this,as just trying to stay up with the uro app and GP is enough.
They would I assume do another colonoscopy,which I just had a little under a year ago,and I was considered normal.

Regarding the silicone catheter,I have used one, one time,and what I remember was the stiffness and how sore I got.Guess I will find out next week,as the nurse told me that is what your going to get.
I didnt know there was a silver coated rubber catheter,guess I have been lucky not to have any UTI's.Thanks for the #s on them.
Occasionally I will get some blood,and know of a friend that also does,so its part of the turf I suspect,my nurses were never concern unless there was alot.
Drink lots of water,but you already know that,I'm sitting here typing this and sipping.

Regarding Desmopressin,hopefully I wont have to go there as mentioned earlier I really dont want anymore uro meds!And like you mentioned I agree I would worry about plug catheters too.

I'm trying to lose some weight,hopefully that will help some.Sure miss potato chips!
Do you request your urologists dictation reports? I do and it helps me understand what he tells me and what plans he has for me.That is why I know that I will need several tests,as he mentioned that.
Lynnan

Hi Lannan

My urologist also does not like me being constipated.
The problems come; if I use laxatives I get uncontrollable diarrhea if I use Miralax or other softeners I get uncontrollable diarrhea I am caught in a catch 22.
I do use Miralax but not every day I do eat a tremendous amount of fruit and that seems to be best but I still don’t go every day.

I know it is a struggle keeping up with all the doctor appointment Friday I saw my family doctor and next Tuesday I start my four days of IV therapy.
It dost help that my doctors talk to each other. At my doctor appointment my family doctor told me my neurologist wanted me to take Lasix for the week of my IV’s. I am also to stay on Hydrochlorothiazide another water pill I am going to pee my head off.

I have been to several different Gastrologists over the years I had many colonoscopies and barium enema test over the years and they are not much fun. My current Gastrologists I been with 15yrs he is not so test happy I get a colonoscopy every two to three years depending what he finds.

You seem not to have many urinary infections that’s wonderful.
Since I been using the all silicon catheter then to the silver coted all silicon I been infection free to me that is great.
I think you will like the silicon coted catheter it gives you that much more protection.
I did have some small problems but now I have to look to see if it is there it is that comfortable.

The reason I asked you about blood in the catheter last month I had a lot of it I mean a lot. Like anyone that uses a catheter will see small clots or small amounts of blood that is normal. Friday at my family doctor I asked her about it and was told if it stopped in a couple of minutes don’t worry about it the catheter probably got pulled and since I have little to no feeling I probably would not have known.

Me I am on so many drugs I also question everything anymore and Friday at my doctor appointment I question my family doctor about getting off some of them. She said she does not see anything I could stop.
A lot of my drugs are for pain then hypertension.
She than told me about going onto Lasix the reason being when I have my IV my blood pressure goes up into the 200/150 range. They feel it dose because I am retaining too much fluid. The medication I receive by IV is Gama Globulin it is supposed to confuse the immune system trying to stop it from attacking the nerves.

I use to ask for dictations and records of doctor visits but I get way to much paper work and most of my doctors explain things well.

I here you about potato chips my biggest thing is ice cream.

2lyle