*** Wondering ** Anyone use INDWELLING foley catheter????

[wolfaleena]

I urinate about every 20 minutes... if i don't heed the nudge to urinate then my bladder goes into spasms and i cannot go and i start this awful retaining! then i have to self cath.. nightmare, isn't it! i am suffering terrible presently. wondering if anyone has tried simply using an indwelling catheter. (foley) it seems to me that it might give us some freedom. i self cath and it is not fun, but if the IC bladder could stand an indwelling cath.... why not?? anyone have any experience with this.. i would love to know.....
i am on antibiotics because i self cath so -- the infection part should be covered, the irritation, though, i am not sure if it would aggravate the urethra, sphincter, bladder and all of that and add to the unrelenting pain that i already have!! just been thinking about this as i suffer through this disease.. and try to find new strategies and plans until someone in the medical community comes through for us all!! ... Any thoughts or comments would be greatly welcomed
thanks all!
i would love to hear from anyone with experience with this or just thoughts or comments.

[Katrina]

I know others have to have a break .....it has its good and bad points....good luck on hearing from others that have. :grouphug:

Have you tried muscle relaxants for the retention? TENS unit?

[wolfaleena]

thanks katrina for your reply..
yes, i have tried a variety of muscle relaxers and varing dosages.. i have tried internal massage, myofacial release, biofeedback ...you name it, i have tried it..
the tens unit i have from a previous back injury and i was going to give it a try for ic.. not sure of placement of electrodes to help with all my ic problems, which are bladder spasms retention , urgency , frequency and pain. the whole nine yards.. i am up for as many suggestions as i can get on the placement of the electrodes.. i did a reply from another member about placement that she usese which i will try... but other suggestions are really really welcome..
thanks again so much.. you are an angel~

[Imustpee]

Hello...I have done foleys before and I loved them...I had one in for 4 months before my bladder removal....I could eat and drink whatever I wanted...I could sleep for hours and hours....they do have some good points....

[Kip]

I urinate about every 20 minutes... if i don't heed the nudge to urinate then my bladder goes into spasms and i cannot go and i start this awful retaining! then i have to self cath.. nightmare, isn't it! i am suffering terrible presently. wondering if anyone has tried simply using an indwelling catheter. (foley) it seems to me that it might give us some freedom. i self cath and it is not fun, but if the IC bladder could stand an indwelling cath.... why not?? anyone have any experience with this.. i would love to know.....
i am on antibiotics because i self cath so -- the infection part should be covered, the irritation, though, i am not sure if it would aggravate the urethra, sphincter, bladder and all of that and add to the unrelenting pain that i already have!! just been thinking about this as i suffer through this disease.. and try to find new strategies and plans until someone in the medical community comes through for us all!! ... Any thoughts or comments would be greatly welcomed
thanks all!
i would love to hear from anyone with experience with this or just thoughts or comments.
I have tried indwelling catheters but am now not able to tolerate them as I have end stage disease. I too have to pee every 20 minutes but I also only have a very small bladder capacity as well. I am waiting for a cystectomy.

I suffered terribly with severe bladder spasms and am no longer able to tolerate a long term indwelling catheter.

The down side as well of a long term indwelling catheter is it an reduce your bladder capacity as the bladder is continually being emptied, so you may want to use a flip flo valve so that you can fill your bladder and then empty by opening the valve (useful as you do not need a bag either then) It will depend if your bladder can tolerate something being in it all the time, if you are currently getting bladder spasms, they may get worse

I do ISC 20 times during the day and between 6-10 times at night. I now use Speedicath Compact which are fantastic and as the length of catheter is smaller it does not cause as much trauma to your urethra, bladder etc...If I do not cathterise I am unable to empty my bladder as I have had so many urethral strictures that I have had most of my urethra removed now. I am also doubly incontinent (have Chron's diesease as well. I regularly go into retention so can sympathise with you fully there. Pain wise I use distraction therapy, local anaesthetic gel such as instillagel, cold water, muscle relaxants,

I would stick with self cath personally but that is only based on my own experience.

Good luck

Kip

[Kip]

Also, if you do go for an indwelling ensure that is 100% latex free, preferably silicone as you are at high risk of developing a latex allergy.

I have a severe latex allergy which results in a severe anaphylactic reaction through using long term indwelling catheters

Kip

[wolfaleena]

Thanks for all of the information, i too have a very small capacity. i have had ic for about 15-20 years now and i believe my bladder capacity has definetly shrunk over this time period.. Kip, i would be interested in more info on the speedi cath that you were speaking of..
Great input and info.. i am fearful of using a indwelling... but i can't go anywhere like i am now.. whenever i try to even run errands it turns into a nightmare for me~ running from bathroom to bathroom and then not being able to go and then retaining and then the spasms pain and FEAR. This disease is so unerving.. i am usually pretty good at handling things, but last night I just broke down and cried and cried in front of my husband, (which i don't like to do). He is so good, but it takes and emotional toll on him.. and I don't want IC to ruin his life! i try to stay positive, but like i said last night to my husband, "sometimes you just have to cry" Today, emotionally, i feel much better and calmer.. But the enemy IC is still rearing its ugly head~!
Thanks for all the info on the indwelling catheters.
Kip, if you could give me more info on the speedicath compact, i would appreciate it.. thanks again for the info and the support~ Us IC people are real warriors!!!!

[Kara29]

I am the Queen of Catheters. I've had an indwelling Foley Catheter since December. They actually help me. No urine, no ugency, frequency, pain, or retention. If you have any questions about them further. Feel fee to PM me. I am getting sick of mine at the moment though but I know it's for the best. I've been using Foley's for 7 years now on and off. It's the only time I get a break. I too, like Imustpee, could eat and drink whatever I wanted.I could also sleep for hours and hours. I was so in love with the way mine made my bladder feel that it lead to my Cystectomy in 2002: see my ICN patient story at the bottom where my signatgure is. I also have a dancing foley catheter as my screen saver. Messed Up Eh?? (I know, you can all laugh at me now) :biglaugh: I am awaiting Urethrectomy after Cystectomy. Surgery is in one week. :smile tee

Kip can you explain what the Speedicath Compact is? Is it for men and women? Where do you get them?

Kara :angel:

[Kip]

If you go to www.coloplast.co.uk

Follow the links on continence care and it will even show you pictures. I am not sure if it is available outside of the UK but you can contact one of the advisors and they will let you know, they are usually very helpful.


It is important to express your emotions, don't ever be afraid to cry in front of someone you love, this stuff is tough, and so what if someone sees you cry you are only human, sorry to burst the bubble and you are being too hard on yourself, you are dealing with things that others take for granted, you are in pain, it's embarassing. I learnt this from my wonderful partner and from some of the lovely nurses/Dr's I meet on my weekly visits to the hospital. I do not just have urological problems, I have renal, gastro, cardiac, haematology, bone marrow, immune, gynae, and neuro probs. Life is hard and living is harder, you get out of life what you put in. I get very down as well and have found things harder to cope with but you are not alone. Do not let this condition stop you doing what you want to do just find another way to do it. I do, I cycle, I even won the mountain bike championship in the UK last year, if I can do it anyone can.

:grouphug: BIG HUG

Kip

[wolfaleena]

Kip: thanks for the words of encouragment and support!
I appreciate your response very much.
congratulations on accomplishing mountain bike championship,
i checked out the speedicath. i will look into it further..
Many thanks again
Celia

[wolfaleena]

kip thanks again for the information on the speedicath compact.
i did contact the company here in the states..
for anyone else who is interested. .... they were extremely helpful and hooked me up with a few different distributers of their speedicath compact. one of the reps from one of the distributers called me today and is sending me samples of various types of the lastest self caths. Wow, ask and you shall receive. it must have been all the prayers that everyone was sending my way.. i can't wait to get them.. (i never thought i would be so happy trying out various self catheters) but anything to give me more freedom and better quality of life will be great. Thanks Kip for posting the name of the company! :flower:

[Kip]

I am so glad that you got the help that you needed and hope that the catheters have helped.

I had to have emergency life saving surgery 7 weeks ago as my bowel and bladder finally failed. I am now very well, and almost symptom free after having large part of my bowel and bladder resected and a urinary diversion made. Have got used to a stoma very quickly and quality of life is fantastic.

Let me know how you are doing.

Best wishes

Kip

[Dianne]

I know a lady that had a supra pubic catheter placed and she says it gave her a life again. She loves it. She went this route so if there's a cure later, she can be re-hooked up again.

[wolfaleena]

that is thinking ahead and a very positive outlook of hope for a cure!!
do you know if the suprapubic catheter bothered her at all.. i have such awful suprapbubic pain and pressure all the time. i guess we are all different.
I spoke to my doc about it and he thought that it would be to irritative to my bladder.
But it sure sounds like a good idea to me.
Thanks for the reply.
Blessings!!

[Kip]

I would get seen by a pain team first prior to any surgery, in my case I did not get the choice as my body packed up on me, however having seen the team and being put on the correct analgesia for my type of pain this has greatly assisted me. I have slowly cut down the number of meds (40 tabs a day to 30) The surgery will not guarantee you a pain free existence. With the stoma, I still get pain in my urethra (what's left of it!!) which causes spasms urethrally and in my bladder, this often makes the stoma bypass and leak around my abdomen as well as via my urethra, however the difference is I know what controls the type of pain now. I cried the 1st time I was pain free as it has been a long time coming.

Supra pubic catheters are good but may not alleviate the symptoms of IC, if you do go that route look at using a flip flo valve rather than just an open drainage bag as the bladder will lose its tone.


Thank you for your PM too

Take care keep in touch

Kip