Cathetor in bladder... is it better for surgery?

[tuazmom]

Hello,

I am soon to have to have surgery to remove my ovaries and due to the past pain I've had with IC and my urethra, I'm considering having the cathetor directly inserted in my bladder.

Wanted to know if any of you have had that and how that affected your symptoms.

Thanks.

[ICNDonna]

I'm assuming you mean a suprapubic catheter, inserted through the abdomen into the bladder. I've never had one, but have had surgeries when I had a urethral catheter overnight and didn't have any problems with them.

Donna

[Judith56]

I have had both- for me the urethral one caused less problems. When I have had a suprapubic catheter it caused bladder spasms. We are all different, so you may be okay with it.

[Nancy178]

Suprapubic Catheter (SPC)

I have been struggling with IC for 14 years now and even tried the InterStim Implant, which didn't work for me. Deciding that I would bite the bullet I talked to my Urologist yesterday about having Botox, but found out that my Insurance won't cover it. Being retired now from a very hetic career, but still needing to supplement my Social Security Checks, I had an offer to teach at a Local Real Estate School, however, I knew that I wouldn't be able to because I go to the bathroom every 15 minutes. (For the last 13 years I averaged every 30 minutes to 45 minutes. This year I'm down to every 5 minutes to 15 minutes).

I know that Catheters cut me when I tried to Self Cath. Couldn't walk at all. So I told my doctor I'd sure like to try to wear a catheter,but can't because it makes me bleed and I can't walk due to the friction. He said, since you don't mind wearing a bag I can do a Suprapubic Catheter. You can keep it clipped while you are at home and use the bathroom as normal, and just clip on the bag when you are ready to teach or go out for the day. Since he is going to do a bladder extension, he will do the Suprapubic at the same time. So I am waiting for the nurse to call me and schedule my date.

The only worry I have with this procedure, is will I feel the urge to have to go pee just like I do now. I told my doctor that and he said, if you do, we will remove it. And it's worth a shot.

I can't keep worrying about whether a procedure will work or not. I must try them all, until one day, one will work.

One thing for sure, I'm 63 years old. Have avoided getting health care with other doctors because I can't endure long testing times. I'm only good for 15 minutes. Some tests take 45 minutes and you can't move. I cancel those tests and my health is suffering from it.

Due to dehydration my teeth are dry. They are cracking and splitting and changing color and the enamel is peeling off. My hair is falling out. My bones don't feel like they can support me any more. I have cramping in my legs and thighs, and I'm tired all the time.

My doctor gave me a good Internist name and I will make an appointment. But no since in making an appointment if I can't lay long enough on the table for a doctor to examine me.

I have hope again as I did with the InterStim. It hurts when things fail. But it's wonderful when you find something that might work and that hope comes back. But I am resolved, this time, to try everything in my power, that is offered to me, because I have nothing to lose!

I will keep you posted.

[ICNDonna]

Nancy, If you are suffering from dehydration due to not drinking liquids, that could be a large part of what's causing the severe frequency. When the urine becomes concentrated, it's more irritating. If that's the case with you, I suggest you increase the amount you are drinking. It might not effect your frequency for at least several days, but definitely worth a try.

Donna

[Judith56]

You know this is a tough question, but you really answered it yourself. You will not know until you try! One person's experience may not be yours, so go ahead and try it, the doctor told you he can always take it out. Good luck!

[Nancy178]

Suprapubic Catheter

Well, I had my operation on October 13, 2010 and by golly it worked!

After everything else failed, having the Suprapubic Catheter Surgery has given me my life back.

I have just published a book about my experience with IC, the embarrassing moments of living with it, all the emotions of dealing with it, and my experience before going into surgery, and after surgery.

I also discuss how my life has changed and how I'm dealing with living with a Catheter. I also stress the importance of being organized when it comes to sterilizing your bags, especially when you're ready to switch them for the night or the day.

I've found products online that helped make wearing a bag comfortable as well as some tips about how to organize your medical supplies.

I've also included full color pictures of how to connect your bags to your Main Connectors, and tell you step by step how to do things.

Yes, sometimes I still have spasms, but not like before. They only last a moment and then their gone. I notice that when I have a spasm, that my bag will start to fill either just before or just afterwards.

If you would like to take a peek at my book go to....
http://stores.lulu.com/nancy1781089

I hope all of you will one day find what works for you too.

Nancy Neville

[Nancy178]

Update

It has been almost 5 weeks since I had my Suprpubic surgery. It has been an emotional and physical roller coaster all the way. Not so much in getting use to wearing tubes and a bag, (because that wasn't a problem) it was the committment.

I have had several blood clots that plugged my catheter and had to go to the doctors twice to have it flushed out. And the incision took at least a full 4 weeks to start to heal to where it didn't sting so much.

I had to learn how to care for my tubes and catheters and bags. And I did a lot of shopping around to find the best bags to wear and the best connector tubes, etc.

The hard part was the bleeding afterwards. I blood heavily for days at a time and then it would clear and then I'd bleed again. I was tired all the time. But at least I didn't have to go pee every minute of my life. Instead I would empty my bag about every hour and a half or two hours. Just as a precaution. I probably could have lasted 3 hours.

I feel like I have infection today as I do burn around the incision and I have a lot of cramping. But I find the Pro's out weigh the con's.

For the first time in 7 years I can go to the store without wearing a diaper!
It took a lot of faith in my catheter to do so.

Yesterday is the first time I had the courage to plug my catheter and live free of tubes and bags for a full day. I did revert back to going to the bathroom like I did before, but it started with an hour and a half, dwindling down to every hour and then to every half hour and back to my 20 minute a day routine.

But the reason for having all this done was because I have the option to plugging up my catheter when I'm home, and connecting me up to my tubes and leg bag when I leave the house or have an event to attend. That is very appealing and it felt good to do that yesterday.

All that I have to conquer now is to get this infection taken care of and find out just the right place to stick my catheter holders on my legs so that it doesn't pull my skin off, and I'll be in "Heaven".

This procedure is not a piece of cake, let me tell you. You need to really know what you are getting into. I thought it would be a simpe thing. Make a hole, stick the tube in and I'd be up and running...right? Yea...in my dreams.

It takes a lot of focus and patience, and keeping your mind focused on why you had this done. It takes time to adjust, time to heal, and time to learn how to keep things sanitary.

But, less than 5 weeks into this thing, I finally am feeling strong again and almost 99% of who I was and am. Just a few minor things to nip in the bud.

I now have relief when going the doctors office and not having to worry about using their bathroom 100 times before I'm called in or waiting in the patient room for the doctor to come in and wondering if I'd have time to pee one last time before he checked me out.

I'm free from all that worry!

I feel a little numb. Like it's not true! Am I dreaming? 15 years livng with this problem and now to be able to go out in public and not worry! Quite a change.

Nancy Neville

[ICNDonna]

I think I might be able to help with the tape on the leg problem. I'm very sensitive to tape, but the last time I had to wear a catheter following a surgery, I was given a band that fit around my leg and had a fastener to hold the catheter. It was stretchy and fastened with velcro --- I believe it was called a "cath keep" --- you might look into that.

Donna

[Nancy178]

Tape

Hi Donna. Just re-read your profile and you have such good advice to everyone. Always there for us all. What a gem!

Actually I've experimented with them all. I have the velcro leg strap, but it tends to slip down with movement. That an "owie" ! But it works at night time, so I sometimes will slip that on when I don't want tugging on the Statlock Catheter Holder.

I'm getting better at situating the Statlock on my thighs to a certain position that I know won't pull so much on my skin when I bend or stand. Over a few days, though it does start to itch and irritate.

I've been rubbing some Neosporum around it, just enough to soften the skin and that works, but it does lossen (over a few days) the Statlock.

I've just ordered a leg wrap made out of (hmmm forgot what it's called, A neo something or other. You have to measure your thigh and then order it. I haven't got it yet, but I want to try attaching my Statlock on this leg wrap and see if that will work. Then at night time switch to the velcro leg strap.

I am a real believer in either I find something that will work, or I will invent something. Especially since having a Catheter is giving me back my life. I need to find things that will make wearing it a little more comfortable.

I went to the doctor yesterday and he replaced the main catheter into my incision (which has to be done monthly). He replaced it with a smaller tube which made me leak again around my incision. This will last until the skin around the incision shrinks and heals again. In the meantime, the incision hurts and I rub neosporeum around the incision. I had a rough night last night, but I'm feeling good this morning.

I like the fact that I have been able to put a plug in my catheter whenever I want giving me the freedom of before, and then hooking a bag to me when I go out. This is great!

I gave the doctor my first edition of the book I wrote, (I dedicated it to him) and he was so pleased! He couldn't believe it. He said he can't wait to "get to it" and made sure he grabbed it on his way out of the room when we were through. I plan to add to the book as I go along. (Pictures, etc).

I've tried using water proof tape to hold my tubes, but tape is tape and everything pulls. Velcro, tape, you name it, skin moves and tape doesn't, so when the two meet, yikes! But I'll find away to fix all this. I'm just beginning.

I want to thank you Donna for your posts on here. You have been a great help to me over the years and I'm sure to others.

It's good to be on here where we all know that we are not just imagining things like most doctors try to tell us.

This is real! It's good to know that we are not alone in all this.

Until later.

Nancy Neville

[ICNDonna]

Okay --- one more thought. Take a piece of elastic and tie it around your waist, leaving one end long enough to fasten to the leg band --- tie or pin the elastic to the leg band. That should keep it from slipping too badly. It looks wierd, but nobody's going to see it.


Donna

[Nancy178]

Lol

I kind of thought about that, in a way.... I thought about getting a garter belt, looping the snap around the leg strap. If this leg wrap doesn't work, I will try the elastic thingee and see.

The only thing with having a stretchy material try to hold up another stretchy material may not work. So I need a solid object. But I will try any and all suggestions. One has to work some time!

They also have these velcro thigh wraps. I like that too. But it's heavy looking. I want to try the soft leg wrap I ordered and see first if that works, then try the velcro leg wraps.

Any ideas and suggestions are welcome!

Nancy

[ICNDonna]

You could fasten elastic to a belt, but the piece that goes to the band really needs to be stretchy so you are free to move around.

Donna

[Nancy178]

The Perfect Fit

Well, Well, Well.....

Donna inspired me to experiment more.

I had on hand 3 Foley Leg Band Catheter Holders. (I bought every Catheter Holder under the sun to try them all out). So I used one for my leg, and one for my waist.

I then took my favorite Catheter Holder (which is a Statlock Catheter Holder that has a swivel lock) and I stuck it ontop of the Foley Leg Band Catheter.
(I folded the flaps around the leg band and made sure it rested smoothly with no buckling)

I then put the leg band on my leg and I put the leg band around my waist. I then took two velcro leg straps and I looped it around the leg band and around my waist band, and did the same with the other Velcro leg strap, and looped it towards the back of my leg straps and waist strap.

P E R F E C T !!!!

No tape pulling my skin off. No tape giving me sores my thighs. No strap slipping down my leg. There is no tugging or pulling at any time. And it feels like I don't have anything on. This stuff is so light and so soft to the skin. Unbelievable!!!

So that solves that issue.

Today I started bleeding AGAIN!!! Drinking lots of water. I did some shopping and lifted some heavy dog food. That might have brought it on, but the doctor did change my catheter on Monday and the incision is raw again. (Just when it was healing)

So Donna...now we know the rest of the story!

Nancy Neville

[Looking4HopeDMV]

Nancy, how are you doing today?