Approved to Self Cath - Suggestions Welcome

[sickofmybladder]

Hi everyone - well I recently gave the DMSO treatments a try - made it through 2 and promised I would never do that again - so my doc has approved for me to self-cath 3 times a week the rescue instillation.

I spoke to the nurse and she seems to think we can cover everything in one long appt. next Tuesday - :confused: Glad she has so much faith in me :loco:

Anyway - needless to say - I am open to any quick tips all of you "veterans" might have to offer. (including anything I might could "prepare" for in advance)

Thanks in advance

[jen74]

I do at home instillations using heperin, lidocaine, and saline. My husband actually helps me to do them. He does a good job. I am going to try and get the nerve to do them myself, as I should learn, but it is more comfortable laying back for me which would be hard if I were to do them myself. I hope that they help you and you get some relief. ALso, the cost is way less of you do them yourself opposed to going to the doctors office to do them, that is for sure.
Jen

[ettegirb21]

I as well am going to be learning how to self catheterize. How exactly does it work? My husband said he is willing to learn how to do it. Do you think it'd be easier for him to do it to me than to do it to myself? I'm so scared to learn, I know my doc. will be great, but I just want as much advice as possible from people who actually do them on their own. Thanks so much!! :)~Brigette

[Kathy in Canada]

Hi there,

If you click on my name you can see previous postings I have done. The one on 07-04-2007 at 06:11 pm has my posting (kathy in Canada) in the list of how I do Elmiron instillations. My description of how I catheterize myself might help you. Maybe have a go at at it without putting the meds in the first time. Just learn how to catheterize your self. It gets easier with time. After 3 or 4 times you will feel like a pro.

The only things that I would add to that posting I did before is that I rinse myself off down below when I have urinated out the instillation, in case it causes irritation.

I have done it 50 times or so without getting an infection.

Good luck, I'm sure you will manage.

Kathy

[ettegirb21]

Thank you so much!! I'm super nervous, it's seems like there is so much to doing it right. I'm scared of it hurting (as it always seems to when docs do it), or getting an infection, or irritating my urethra....etc. I don't have insurance right now, so I'm hoping my uro. will teach me so I can savesome money and do it on my own. Thanks again!! Glad to hear that you've had such great success!! ~Brigette

[sickofmybladder]

Kathy - went back and read the thread you mentioned - it was very helpful - thank you. I think I just have to let go of the "nervous" factor and I'll be fine.

[sickofmybladder]

:smile tee

I just wanted to follow up - in case anyone else is nervous about self-cathing - I successfully did it today at my doctor's appt. -

It is almost liberating to know that I can take care of this at home now without worrying about making a doc appt.

Thanks for all of the suggestions...

[ettegirb21]

Congrats!!:woohoo: How did you do it? I just picture myself standing up w/ a mirror trying to find my urethra...haha. I'm scared, I'll be learning on the 23rd. I'm so happy you successfully did it on your own!

[sickofmybladder]

It's really not bad - the nurse held the mirror for me today - but I brought one (great tip from this site) with a little stand - so that I can sit on a towel on the bathroom floor at home (against the tub) and put the mirror close enough to see without having to hold (since you do need both hands) -

My nurse was very thorough and took the time to make sure I understood everything -

Good luck on the 23rd - you will be fine and it is a huge benefit - I've priced the supplies and it looks like for about one week of copays at the doc - I'll get 10 weeks of supplies - plus like I said it's really nice to know it's now on MY schedule - not the doc office.

Let me know how your appt. went....I'll be thinking of you.

[Kathy in Canada]

Hi there,

I'm so glad for you that your 1st try catheterizing yourself went well. It will get easier with time. I find it so handy that I can do instills myself and get some relief right away. I am on oral Elmiron, but it doesn't seem to be working that much yet. But the Elmiron, 2 % Lidocaine, 8.4 % sodium bicarbonate, sterile water instillations are helping my IC.

I'm a RN so I was used to handling the equipment, but I was still scared doing it myself the 1st few times. Once you get a routine for how you do it, things go pretty smoothly.

One thing that I noticed that I needed to change the size of catheter used sometimes. I was using a 12 French catheter, but changed to a smaller 10 French catheter - I thought because it was smaller it might be less traumatic to my urethra. I did fine with it for quite a while, but last time I had a bit of trouble getting it in. It seemed to wiggly to much & not go in easily. I think it was because I had to do catheterizations more frequently recently due to a flare up and maybe my urethra was a bit swollen. So the next time I do it (tonight) I'm going to go back to the 12 French catheter again to see if it works better for me at present. I bought a box of both sizes of catheters to see what works best for me.

I hope things work out well for you.

Kathy

[L. Thomas]

Hi
Great to hear that you are able to try home instills. They are the answer for me. I'll be glad to answer any questions about how I do home instills. Just PM me. I have a link in my signature to explain how I do home instills. Let me know if I can help.

[curlycue]

I do them myself as well. good luck. I rinse myself before and after but sometimes I fall asleep with the meds.

[SrMaggie]

Another way to find the opening is to cough. I used that method when I couldn't find where to put the catheter.

[Dixiefireball]

I took my husband alone with me for my training leason with the installments.
at first I let my husband give them to me at home till I got brave enough to do them on my own.
I now can do them standing over the toilet without having a huge mess behind.
but in the beginning this is how I did them when I did them alone. Hope some of this information will help you.
1. I mixed up my installment heparin, marcaine, sterile water.
2. lay back in the tub with
3. adjust a make up mirror where you feel you can everything you need to.
4. (depending on the day and the time I had.)I would apply some lidocaine gel let it set for five to ten Min's.
5. using my mirror I would insert the cath draining out all the urine in the bladder.
6. I then would insert the syringe to the top of the cath, then pour the mixer in letting it drain slowly into the bladder.
7. once all the medicine was inserted. I would then get up clean my mess up, wash the tub.
it was a lot easier when I was learning to do it this way.

Hope some of this will help. Everyone has given you some great idea's. it may help if you print them out to just have for a ref. You may be able to look back on these later or while your still learning to figure out what works best for you.

best wishes.
Rhonda

[ettegirb21]

Thanks so much. The only thing I'm really concerned about (besides the pain and hurting myself) is that my uro. doesn't ever empty my bladder prior to the instillations. He's been doing them to do me for years and I've had success...so I don't exactly know how it would work in draining the urine out?! Just a little concerned since he's never done this to me before.

[hdb1982]

sick,
do you know the cost of the supplies without ins? Sometimes they give you a pamphlet showing what ins saved you. I want to start them in office but can't do it that way forever, trying to get back to work, and if I can't afford the supplies I don't know why I should do them at all. Thanks ~ Heather

[sickofmybladder]

Heather -

For the supplies (which I ordered yesterday) - it is some money upfront but not bad considering what my doc office copay is:

I think I ended up paying about $70 for all the supplies I needed - and this gives me enough catheters for 2 months - and enough needles, syringes, sterile ky, etc. for alot longer than that (the needles came in a box of 100 for example).

Now the medicine was covered my insurance - thank goodness - because from what I picked up on at the pharmacy the Heperin is VERY expensive.

FYI - the main reason I agreed to try self-cathing is because I was only able to get off work 1 day a week to go to the doctor and they just weren't working as well - now I can do them 3 times a week at home - So I completely understand - It's quite a relief to be honest.

[sickofmybladder]

Thanks so much - I wanted to let you know that one of your posts was what gave me the confidence to say OK let's try it.

Thanks again.

[Dixiefireball]

never drained your urine out before an installment? when they insert the cath any left over urine in the bladder flows out. It may be because I retain the reason urine flows out when I insert the cath or they inserted the cath in the office in the pass..

If any left over urine is left in the bladder it looks like the medicine would be to deluded to much to do it's job. its important for the bladder to be completely empty so when the medicine enter the bladder it can start to work as soon as it hits the bladder walls.

Please don't think I'm disagreeing with you at all. that isn't the case. Just found it a little odd, and trying to figure that part out. I guess with all of us being different when we go to empty our bladders some patients bladder really do completely empty.
I personally can't stand for my bladder to be empty at all. I will go into a fit due to the pain. the only way the pain gets back under control is when I put the heparin and marcaine installment in. I have to have something in my bladder at all times. if not the bladder walls will hit together causing open wound to open wound to touch causing outrageous pain for myself.

If you can get an RX for your caths some ins. companies will pay full price for your caths. I would check into it to save you some out of the pocket money if at all possible.

Best wishes hope all works out GREAT! :)
Rhonda

[curlycue]

That is a great idea. coughing. Good Luck. The thing to remember is that its only going to hurt for 2 minutes or so so the quicker you insert it the quicker you but the meds the quicker you get the cath out. and then relife. Yea are you using the lo fric caths.

[L. Thomas]

Thanks so much - I wanted to let you know that one of your posts was what gave me the confidence to say OK let's try it.

Thanks again.


:smile tee You are more than welcome. :smile tee I hope things keep going well for you. I still do instills as my only treatment. I went last month for my 6 month follow-up and everything is just great.

We did talk about allergies. He said that allergies do affect IC. I have had the complete battery of allergy test, including heave metals. I have no food sensitivities and only a few contact sensitivities. I am asking my allergist to contact my urogynecologist and discuss the possible benefits of allergy shots for my seasonal allergies. During the time I have seasonal allergies I notice that my IC always flares.

[ettegirb21]

How do you go about buying the catheters and all to do the instillations at home? Do you need a script from the uro. or can you just buy the stuff somewhere? Thanks so much! ~Brigette

[sickofmybladder]

How do you go about buying the catheters and all to do the instillations at home? Do you need a script from the uro. or can you just buy the stuff somewhere? Thanks so much! ~Brigette

I had to have a script for the catheters and needles - everything else I could just buy - the catheters and other supplies I got from a durable medical supply store - the needles and meds came from the pharmacy - I've read that other people manage to get everything from the pharmacy - I'm not sure how that works.

[L. Thomas]

I get 2 prescriptions
One is for the meds and I take it to the pharmacy
The other is for the durable supplies..catheter, syringe, needles and I take it to a durable supplies store.

My insurance covers the meds but the sodium Bicarbonate is cheaper retail than the copay. The lidocaine and heparin are generic.

My insurance will cover the catheter and syringe if I get them from a durable supplier (not the pharmacy). Needles are "out of pocket" because my insurance doesn't cover them. My durable supplier sells them to me at his cost.

If you have the pharmacy compound the instill it will cost a fortune.

[curlycue]

It sounds like you got all kinds of great info. The ladies here are the best and most knowlagable(is that a word) they know more than drs. One question is anyone using Lo Fric caths. Good Luck

[sickofmybladder]

I am not using the low-fric but have kept the info in the back of my mind in case I start having problems...

On another note - I wanted to let everyone know that I can already see great improvement in symptoms and frequency after only 4 regularly spaced out instillations - and I have had absolutely no problems at all (other than insurance snafu's which is a whole 'nother topic).

For anyone who's doctor has recommended this and they are feeling uneasy - I was right there with you - but please believe me - it is not a big deal and you CAN do this.

Thanks to the help from everyone.

[curlycue]

Great I am glad you are feeling better. I use the Lo Fric and they are great. Thanks

[L. Thomas]

NO ONE absolutely NO ONE could be more apprehensive about self cathing than I was. I have had horrible experiences with cathing all my life...and I have a horrible "needle phobia” and a catheter just reminds me of a big giant needle.

I have been to the hospital for a couple of out patient surgeries on my knee and they won’t let you go home until you pee. I told them if they would get me a catheter I could take care of that. What a shocked look on the nurse’s face. Given the choice I will gladly self cath when it is necessary. I have no discomfort when I cath myself. I can’t always say that about how it feels when someone caths me.

I have never used a regular catheter. I use a ped feeding tube (8fr). I think they are like regular catheters but much smaller.

[curlycue]

You know. I feel the same way, as soon as I found out I can self cath and I do a better job myslef walah (is that a word) I will never have anyone else do it unless its a emergency. I am so glad we are strong, powerful women. IC can make me feel like I am not sometimes.I guess it challenges me.

[dreamy]

So did you ask to do them yourself or was it suggested to you? How should I ask my doctor? I dont know how to go about it exactly. I would like to be able to do them if I need it and not have to wait until I get to the doctors office.

[L. Thomas]

Instillation was the first treatment suggested to me. :woohoo: I think that was because he had done research in the effectiveness of instillations and found it was highly successful. He has also done research in diagnosis of IC based on symptoms indicated on 2 “bothersome symptoms” scale. I complete a survey at each follow-up and he works with me if we think I need any adjustment.

He suggested elmiron once but I didn’t like the idea of hair loss :confused: so we just let thing ride. That is when I figured out that IC was closely related to allergies and we started antihistamines. My allergist likes a nasal spray Astelin and Clarinex.


He did say there were a number of people that absolutely would not even :toilet: consider instillations. I live 90 miles from his office so instead of going to the office for instills he suggested I do them at home.

I really want to impress you with the thought that there are MD’s that will work with you and would be totally open to your suggestions in treating IC. Unfortunately there are still those MD’s that put themselves on the pedestal :loco: and are offended if you indicate his position is not to be questioned.

Just tell him you know that home instillations has worked for a lot of people and you would like to try instillations. You will probably have a few in the office to get things started…

[sickofmybladder]

In my case - I had been doing in office instillations for 4 weeks (once a week) - we did the rescue first (my current "recipe") and the effects would only last one day - then we tried 2 DMSO but I couldn't tolerate the after effects and refused anymore of those....so I really think it was a mutual decision - I talked to the nurse about it during my last DMSO instillation and she assured me that I would be fine - at my next appt. (after I had contacted them and said there was no way I could tolerate the DMSO) they had the script ready for me - we did the teaching appt. - and I was on my way.

[curlycue]

Ladies I am going to tell you. The other day when I went to have the IUD put in after 2 days I was unable to void on my own and the self cath realllly came in handy, not only that but when I am in pain on Saturdays Sundays when the uro is not in I can take care of it myself. I was paying 20.00 copays and the meds it much cheaper to do it myself. Good Luck

[sphinx]

I have so far had 3 instills in the office, each a week apart. They are lidocaine gel, benzocaine, heparin and kenalog. I have 2 more weekly visits scheduled. My Uro's NP is doing them, and she said if they seem to be helping, she will teach me to do them at home. So far, I've only noticed a small drop in frequency that lasts perhaps half the week. Maybe 3-5 less voids per day. Do you guys find it normal to be at this point after 3 weeks of instill therapy? Or-if it was really working-should it be a more remarkable decrease by now? I'm just curious about others experiences......naturally I will talk about this when I see her again on Tuesday:)

[L. Thomas]

I started with 3 instills a week but I could tell immediately after the first treatment that it was going to work. After the treatment while I was still in the office I told him "this is working". Befor starting instills I always felt like I needed to go to the bathroom and my bladder felt full. The effects of an instill last about 3 days. I increased the instills to 1 a day at first and I had no problem with urge or frequency. I gradually have decreased the instills. I really have no idea how often I need one, it just depends. Rarely is it everyday and most times I would say 3-6 times a month. But there are times when it might be 2 weeks or more between instills.

[curlycue]

I do them 3x week and then if I need to do it more I do. Good Luck