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  • ihurttoo
    replied
    I Realize This Thread Is 8mo Old Now, But....

    Like I said, I realize this thread is 8mo old now, but I have been off the boards since around March or April, and dont know if the OP is still out there or not, and if he/she ever got the help needed, (or if the others did.)

    So, just in case you ARE still out there, coming to the boards every day, and DIDN'T get this issue resolved, (or if there is somone else in the same situation as you were in), I wanted to let you know that just b/c your Dr. isnt progressive right now, allowing patients to do home instills, does NOT mean your Dr. can not BECOME progressive enough to allow you to do this!

    My Dr. didnt allow me to do them at home either in the beginning. I had to go to his office to get them 3 times a week FOREVER! (They help me THAT much!) He had NO other patients that came that often for that long, yet he still wouldnt let me do them at home. Then I learned to self cath on my own, and brought him info from this site that others were doing it, and that other Drs were allowing THEIR patients to do it, (including VERY renouned Drs, suck as Dr. Lowell Parsons, the Dr. that INVENTED the bladder instills/rescue instills that I am doing!) When I took him THAT documentation, I told him, "If the Dr. that INVENTED this is allowing HIS patients to do this, and since I already KNOW how to self cath, and hundreds of other IC patients are safely doing it, then why on earth wouldnt this be a consideration for me?!!" Also, I explained to him how sick I am, and the inconvience of driving to his office and back, (30 min each way), plus, sitting in the waiting room for often up to an hour to an hour an a half at a time, while I am in PAIN! I further explained how this alone often makes me MUCH worse, having to do this 3 times a week, and that truth be told, I often needed to do the instills more often, (even daily) as Dr. Parson's and Dr. Robert Mouldwin (author of the "IC Survival Guide") both have recommended to many of their severe patients in numerous who are helped by the Rescue Instills. (I brought documentation of this from lecture transcripts and books.) Lastly, I explained how my insurance had a lifetime cap amount, and that I was certainly racking up huge medical bills with IC, and my numerous other health conditions, and coming to his office for instills, 3 x a week at $350 each, PLUS, having to go to the ER to get them when I was really bad on weekends and holidays for the minimum $1000 you always seem to pay just to walk into an ER, was NOT easy on my lifetime amounts for my insurance caps! Ya know! And it was ridiculous for ALL of those things to be occuring when the the problem could simply be solved by letting me do them at home like so many other patients already were. And that by doing them at home, even if insurance didnt pay for them, (which so far they arent), my out of pocket expense would be $120- $130 a month, which would be FAR less than all the office and ER co-pays! Plus it would be worth it not to have the extra pain, and inconvience and to have that peace of mind for me, and it OUGHT to be worth it to HIM to have that peace of mind TOO, just to know that I would have a non-narcotic option for pain control that works for me!

    Now, remember, that like you and many others here, I am also not in a big, thriving metropolis! I am a tiny, po-dunk town in KY! But, my Dr. IS kind, and he IS reasonable! And after all of THAT, he DID agree and allowed me to start doing them at home!:woohoo:

    The only thing is that if I am in a REALLY bad flare, I still have to go in to see him to get him to do an instill of Marcaine, (b/c I use Lidocaine), and then, he also puts in a steroid. But, some Drs. are willing to give their patients the Marcaine and even the steroids! (Like I said, MINE just isnt willing to go that far!) But, hey, I'll take what I can get! It's baby steps and this was a BIG deal for him! (He still doesnt have any other patients that he allows to do their own instills at home!) But, I DO have faith now that b/c of me, when one DOES come along that needs to like I did, that he will let them now, b/c of me. (I am DEFINATELY breaking him in for other patients!) Dani1978 will be seeing him in January!:woohoo: She has NO IDEA how fortuante she is that she has gotten him 8yrs after I did! (Since I have already gotten him broken in for her! LOL!)

    But, for those of you who made it thru this whole, big, 'ole, long post, (God bless you!), is that if I can do it with MY Dr., then YOU can do it with YOUR Dr. too! (BTW, mine isnt the only experiance like this either! I have 2 other IC friends that had this problem and I pmed them and told them how I did it, and told them what I told you, and they got their Drs. to do it too, even though THEIR Drs had never let anyone do it before either! So, I DONT think it is necessary for you to travel! But, I DO think it is necessary to go talk to your Dr.!!!

    Now, having said ALL OF THAT, I do one to say one last thing....for anyone who is new to instills, your Drs are NOT going to let you do them at home, no matter WHAT you say! Got it! The reason is b/c for the first few months, they have to "tweak" the formula and sort of customize it for each patient. Also, they are going to want to watch your symptoms very closely and moniter your progress and chart it very carefully. After all, NOT EVERYONE DOES respond to instills and some even have horrible responses to them and go into violent flares from them! OThers, do fine at first, then, if the formula is changed at all, THEN they go into a horrific flare! So, of course, the Dr. needs to see all that, and you have to be in the office for that to happen. So they are NOT gonna let you do them at home! Aside from the fact (stating the obvious here), but, that they DO make money on this! And inspite of what any of us wish to think, our Drs are not all kind, benevolent, God-like, Fatherly, Santa figures, just doing out to help us due to their love for us, love of their profession, or due to their hatred of our suffering! While all those things might or might not actually be true, (we will never know), but one thing we DO know for sure...if they charge for what they do, then they DO want to make money! RIGHT! And for a BRAND NEW or even a RELATIVELY NEW patient to come in, and want to start doing their instills at home right off the bat, they'd make almost nothing, YET, they'd STILL have to be bothered by you when you call b/c you are sick and in a flare and need meds called in etc. (And of course, they arent getting paid for ANYTHING they do for us on the phone!) But, I digress!

    The point is the AINT gonna let a new or pretty new patient do 'em at home for a while! But, if you have been doing them for a few months, (8-12 weeks) and have been helped by them, and want to keep doing them, then DEFINATELY pursue the conversation about doing them at home, (even if they have no one else that does them at home!) So, are we all clear about all that now?

    I hope this helps you! But, if you are gone, I still think that someone out there who is meant to read this will find it! (If not today or tomorrow, then maybe a month or year from now!) Does that make sense? Whew! I hope so!

    Well, I DO (obviously) hope that YOU have gotten help by now! But, if you havent and if you are still out there, and read this, and have any questions, let me know! (Or if anyone else out there who read this has any, then, obviously, post or pm me and let me know too!)

    Hope this helps someone!

    Many hugs and blessings,
    Amy

    Leave a comment:


  • Roxie2007
    replied
    I had the same problem with uro dr.s when I lived in Nebraska. I would think in Omaha tho, with the uni. hospital there, they'd be more advanced. Maybe it would be worth calling the hospital and ask them about a dr. who specializes in IC. I did that with at Baylor and they were very helpful. Good luck! Roxie

    Leave a comment:


  • Paininthe*.*
    replied
    Ihurttoo:

    Thanks for the info. I am so sorry for your pain, you must have IC very badly. I wish you the best and pray that you can find relief soon for this awful disease. Bless you for sharing your story with us.

    I'll find out about self-instills. Doctors here in Nebraska are not awfully progressive, but my urologist seems to be open to trying things, so I'll see what he says. The last instill I had seemed to give relief for about a week. That's not very long, but maybe with repeated treatments, that period gets longer.

    Leave a comment:


  • ihurttoo
    replied
    Originally posted by Paininthe*.* View Post
    I've only had one instill, and my doc says he'll do it once a MONTH! Is that way too long inbetween? I'm not sure I can afford to go once a week. Those of you experienced with Heparin, am I wasting my time and $$ by getting the instills too infrequently?
    I am not really sure why your Dr. is choosing to do them so infrequently. But, if they help you, and money is the issue, you might want to ask if he/she would consider teaching you how to self cath and letting you do them at home.

    I just know that they help me alot. It isnt the only pain mgmt too I have, but it is definately a very important one for me. (I'd do them several times a day, if my Dr. would let me!) As it is, he will allow me to do them once a day, but I usually have to do them every other day, or else my urethrea gets too irritated.) But, if they help you, I'd definately ask if you can have them more often.

    I do know that my Dr. normally only does them for people once a week. He sets aside one day, and that's all he does that day. But, since they helped me so much, he had his nurse do them for me 2 additonal days per week, when he was unavailable. (That was before I learned to self-cath and started doing them at home.) So, maybe this varies from Dr. to Dr. I just dont know. But, if it helps you, I'd definately talk to your Dr. about increasing them.

    Hugs,
    Amy

    Leave a comment:


  • ihurttoo
    replied
    Those of you doing Heparin Instills....

    1) When you first started them, how often did you have them done? about 3 times a week
    2) How long before you noticed an improvement in symptoms? after about the 3rd one.
    3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief? For me, I only get about 3 hours of relief. (But my main symptom is daily pain, not freq/urg, like most ICers.) But, when I am flaring, that is when I have freq/urg too. When, I DO have freq/urg, the instills help reduce those symptoms for a couple of days.

    4) If you have them done for "maintenance", how often do you get an instill?
    Since my case is severe, and I get such great relief from them, we have always done them about 3 times a week. However, initially, my Dr. told me if I got better, we could go to about once every 3 weeks for maintenance, but we never got to that stage, since my pain is always there. (The instills bring it down alot for several hours, but they still dont take it away.)

    Leave a comment:


  • purpleviolet
    replied
    Thanks Roxie

    Thanks for the info. I saw some advertised on the internet. I think Jacobs. Is that what you use? PV

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  • Roxie2007
    replied
    HI Purpleviolet,
    Yes I put a small amount around the urethra and since it's a gel it works it's way around the area. MSM is Methylsulfonylmethane an organic sulfur compound. It has worked wonders for me. I've had IC for over 25 yrs and the awful urethra pain for the past 3 yrs. I started using the MSM gel 2 1/2 weeks ago and now I haven't had urethra pain in 2 weeks and no ic flares! It's amazing stuff! Roxie

    Leave a comment:


  • purpleviolet
    replied
    question about msm gel

    Hi Roxie - When you say that the MSM gel works for the urethra do you mean that you put some on and it somehow works its way inside to relieve that bad feeling? Thanks, PV

    Leave a comment:


  • waterflow
    replied
    I have been having the heparin instills once a week straight for the 7 years. It took 8 months before I noticed it helped. I am now trying to do it myself once a day at home.

    Leave a comment:


  • Paininthe*.*
    replied
    Originally posted by waterflow
    I've been noticing everyone had their heparin instills done 3x a week in the beginning. Mine were only once a week. Could that be why it took 8 months to get results??????????????? I'm really wondering about that now.
    Roxi, I changed my email address, and evidently that caused some problems, but I think I'm back online now! You can PM me if you like.

    Waterflow, did you have Heparin once a week for 8 months straight? I've only had one instill, and my doc says he'll do it once a MONTH! Is that way too long inbetween? I'm not sure I can afford to go once a week. Those of you experienced with Heparin, am I wasting my time and $$ by getting the instills too infrequently?

    Leave a comment:


  • waterflow
    replied
    I've been noticing everyone had their heparin instills done 3x a week in the beginning. Mine were only once a week. Could that be why it took 8 months to get results??????????????? I'm really wondering about that now.

    Leave a comment:


  • Roxie2007
    replied
    HI! I tried to private message you back but system said you can't receive private messages any longer (?)
    It was nice hearing from you. Give me a yell if you ever visit your brother down here. Roxie

    Leave a comment:


  • kadi
    replied
    1) When you first started them, how often did you have them done?
    3x a week
    2) How long before you noticed an improvement in symptoms?
    Right away, I knew they were helping. Though we did have to make some adjustments (marcaine instead of lidocaine, non-latex caths instead of red ones)
    3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?
    I have entire good days now. Before the home instills, I never had an entire pain free day.

    4) If you have them done for "maintenance", how often do you get an instill?
    I now do the instillations 3x a week up to daily. Depends on how I am feeling. Most weeks it's 3-5x a week.

    Leave a comment:


  • L. Thomas
    replied
    When did I first start them? 2004

    How long to see improvement? Instantly

    How long does effect last? From a couple of days to up to a week, sometimes longer

    Maintenance: My instills are PRN

    I started out with 3 a week. Then I had to increase at one point everyday. Now I just look for signs and do an instill then. My OS said that I might need to always have them or I might eventually just need maintenance instill every 2-3 months.

    It really doesn’t matter to me. I have no problems when I do the instill PRN

    Leave a comment:


  • Sarojini
    replied
    1) When you first started them, how often did you have them done?

    I started doing them myself at home, three times a week.

    2) How long before you noticed an improvement in symptoms?

    Immediately. The instill is really calming for my bladder.

    3) How long do the effects last...is it only a few hours, or does heparin give days or weeks of relief?

    I get anywhere from a few hours to a few days of relief from each instill...it just depends on how badly I'm flaring at the time.

    4) If you have them done for "maintenance", how often do you get an instill?

    I do them once a week now, in general. More, if I'm flaring.

    My instills are made up of heparin, lidocaine, and sodium bicarbonate.

    Hope this helps.

    Leave a comment:

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