anyone have longterm relief?

[dminton]

I am wondering if anyone has longterm relief of symptoms from doing heparin instills? If so, how many times a week did you do instills, for how many weeks? Are you on a maintenance program of once weekly after doing them more often, or did you just stop? Did you have a period of feeling worse from the catheterization itself before getting better? Was it worth it? How long did remission last, if remission was achieved?

This whole heparin instill thing just seems so vague, like it's a good idea but no one really does them regularly to see results. In my case I did 5 instills, had to stop from soreness from the catheter, had one very good week with no pain at all after the soreness wore off, then flared badly after that. My doctor has no idea what he is doing in terms of a schedule, just winging it.

It's like having a sinus problem; someone tells you there's this great substance, it will help you feel better, but we have to jam a tube up your already sore sinuses to get the stuff in there. Now how fun is that?

Please, any comments?

[SandyRN]

There have been times when I've had several days of relief from one instill, then I have the times where I only get a few hours of relief. I dont really know what the difference is...i.e., I hold the instill longer than average (sometimes I forget it's in there because I go numb!!), I do them daily for several days at a time, etc....I wish I had a better answer for you, but the truth is, I dont know..theres really no rhyme or reason, just sometimes I DO feel better for a week or so, and sometimes I dont. :(

About the sore urethra, I know you'll say no way, but...if you keep on doing the instills, maybe using some lidocaine jelly to numb your urethra, you'll eventually find that it 'toughens up' and the pain from cathing is dramatically decreased. I guess the urethra just has to get used to it.

I'm really not much help today am I? lol

[dminton]

Sandy, your reply was very helpful! I experienced just about what you are describing - no rhyme or reason from one instill to the next. And, I agree that lidocaine gel is crucial to having it go well. I don't know how they do it at the uro office, but they sort of squirt it up there, and then wait for a few mins., then do the instill. When I did it at home, I did it without lidocaine gel, just lube, and it always hurt at the top of the urethra. I certainly don't want to have an instill when I'm already feeling good, because there's a chance that it will work against me. No way to tell. I do know that I will have to be very ready to get the next instill, meaning pretty uncomfortable, so that if I do get relief it is welcome, and if I don't then I can hope for a delayed reaction down the road.

I wonder what Parson's patients do? Every day, for days on end?

Diana.

[SandyRN]

I HAVE found that if I'm miserable, and I mean in horrible pain that my oral meds won't touch, that the instills don't work quite as well, and they're more uncomfortable to do, on the urethra and on my bladder. It's similar to pain meds, it seems to work better for me if I take them BEFORE I'm in horrid pain...

"I wonder what Parson's patients do? Every day, for days on end?" -- I guess so...seems brutal :(


ps...I didnt know you were a nurse?! Are you working?

[dminton]

Sandy, I'm curious what oral meds you use? I have Lorcet but can only tolerate 1/2 at the most at a time, and sometimes that doesn't touch the pain. Sometimes, pyridium works better than Lorcet. What's also really annoying is that even the instills with marcaine and lidocaine don't take the pain away entirely; I can still feel it, must be nerve involvement or the urethra itself that isn't numbed from the instill.

Yes, I have a current RN license, but quit working about 3 years ago, now on disability from IC and other things. I admit that I don't miss it! See my posts under "arts and crafts".

[SandyRN]

My laundry list of meds is listed below....pretty sure that all of them. The lidocaine jelly would probably help that urethral pain. I dont even have any of the jelly, I've been using the liquid, pulling up about 2 cc in a small barrel syringe, and inserting it slowly into my urethra when I'm desperate...most of the time it helps. Also, I save a tiny bit of the instill and when I'm slowly pulling the cath out, I release the rest of the solution into my urethra...it helps numb it some more. Like I said, there are times I don't feel anything I'm so numb....but that leads to retention...can't win for losing sometimes.

I have a current license too...not sure why...I can't get a job, and even if I could I'm not sure I could work it.

[Katrina]

In my case I did Heparin once a week for a long time...than 2 a week for a bit which helped more....and got me to a point where I only turn to them like a pain med now instead of a constant treatment. In a way I think I got some long term help...or at the very least some help to get me through the time where my body had a lot of healing to do....not sure which....but I am thinking I may need to do them regularly again for bit since my last infection was pretty bad....hope that makes sense....we are all so different.

[dminton]

Katrina, that's great that it helped you by doing it only once or twice a week! It seems like I always hear that it should be done 3-4 times weekly, and I remember a few years back reading that Parsons said every day for about a year, which sounded impossible to me to actually do. Anyway, that's great. I bet ideally, my urethra could only handle 1-2 times weekly.

[kadi]

I do the rescue instillations (marcaine/sod.bicarbonate/heparin) pretty much every other day, which I guess makes it 3.5 times a week. I've been on them 8 months now and I feel the best I've felt since I got IC... It's kind of a weird part of my bedtime ritual, but hey, whatever works...

[dminton]

Wow, Kadi, that's great! Do you hold the instill in your bladder as you sleep? No troubles with urethral pain from the cathing?

[rosesitty]

wow Kadi, you deserve a medal! You must have a cast iron urethra! :-) I went on a 3 x per week for 3-4 week plan, made it through 5 instills and ended up with a raging UTI. Still haven't gone back yet.
Hey Diana - prior to this November flare, I was averaging an instill every 1 1/2 MONTHS, sometimes longer. It was enough to keep things in check. You know what's going on now.
Stephanie
p.s. Parsons recommends once a day??? That's a big YIKES!

[dminton]

Parsons may have revised his daily thing because a pt. at my uro's office consulted with him and he said 3x a week. Maybe he changed his tune. The daily thing was about 5 years ago! And another office that sees IC pts. does them twice weekly, or even only once for non-severe pts.

[Dixiefireball]

thanks to the heparin installment i was in remission for 18 mths!! i still use them. I'm not in remission any more, but sure can tell if a day the pain will come back full forces.
I do them up to four times a day at home.
Rhonda

[kadi]

Nope, I hold the instill for about an hour. I fell asleep with it once & spent the next day having "accidents", guess it worked a little too well!

I've had one UTI in the 8 months I've been on them. Since then, I use a new catheter each time, hoping that will prevent infection. (Being allergic to 5 classes of antibiotics makes me a bit more cautious than most.)

I won't say cathing is painless, but the few moments of discomfort on inserting the catheter is not too bad, and the treatments help so much, I can live with it.

Also I'm on continuous use BC pills & I did notice my urethral symptoms got better when I changed to a higher estrogen/different progesterone pill. So, it may be that I just don't have as many urethral symptoms as other people.

I'm just still grateful every good day I have and pray daily that there will be relief for all of us soon.

[dminton]

Good news! I just got home from the uro's office, where the nurse squirted lidocaine gel into my urethra before cathing me to do the heparin/lido/marcaine instill, and I didn't even feel the cath going in! I tried doing home instills, but didn't have the lido gel and also can't do them lying down as I like to see what I'm doing, but it's the wrong angle for me squatting like I was. Anyway, it made a HUGE difference with the gel first, then the cath. I felt so good afterwards, I went car shopping, which is hard even on the best of days! So for those of you who have painful cath experiences, I'd say definitely use this lidocaine gel first, about 2-3 cc of it. It made a world of difference!

[angelgirl]

I have gotten about 6 instills and although I am not getting long term relief I do feel great for an entire week. I have been getting them weekly but then we tried two week period. The first week was great by the second weeks end I was having some pain. They do not hurt (for me anyway). The only discomfort is a little numbness because of the lidocaine and it may be a little difficult to void right after the instill.

For me they are worth it. My Nurse Practioner is willing to teach me how to do them myself, however, I am not ready for that. I don't work so it's not a big deal for me to go to the office which is only 15 minutes away. Although, I might eventually learn so that if I need to I can do it more than once a week.

[Chocolat57]

I had a 13 year remission. Had tiny tiny little bouts after that......drink soda and water and it was gone.

I had chlorpactin treatments every 3 months for 18 months and after the last one I just never had to go back.

For 13 years I've lived without this stuff and then I had a heart cat scan test with dye contrast last week and it has sent me over the top with Urethitis.

I'm soooooooooo bad, I can't be on my feet for more than 5 minutes at a time.

AND, we're traveling to the Coast today for a getaway. HOW can I do it ? Thank goodness we have a Motorhome...........bathroom, bed, kitchen...a house on wheels..........what more could one ask for expect not to be in debilitating pain.

I'm going by the hardest...............hubby needs to get away really badly and so do I. I had just endured 6 weeks of chest pain they said was like having a heart attack 24/7. Great.............now this.

I feel like I'm about to crumble.

I also have FIBRO, LUPUS, MCS, ARTHRITIS, FACET JOINT SYNDROME, SEVERE ALLERGIES, CHRONIC FATIGUE, IBS, DIVERTICULITIS, HIATAL HERNIA, ESOPHAGITIS, and a long list of other stuff. And it seems they have all been in a terrible flare. Been basically shut in since January. I've been sick for over 25 years...since 1981....that was a LONG TIME AGO.

Hope you feel better and there is HOPE for long term help. I'm living proof and I had it bad, bad, bad, bad, when I had those treatments back in the early 90's. NOW TO GET BACK TO THE HEALING PART.

BLESSINGS

[Dixiefireball]

since you having a little buring if your using the latex cath you may want to ask to switch over to the non latex cath. this may help. I know you said you wasn't having a problem when you was having the installment only once a week, but the second round of treatments with latex may be causing the burning.

I'm so glad you are doing well with your treatments. You may soon find remission i did for eighteen months, and believe I see remission in site again. (knock on wood.)

its really easy to learn at home if you learn to do them at home you want have to spend the ex. money on gas, or pay more co-payments that is an added plus.
tell the office you don't feel your ready to just yet do the treatment at home you would like them to start showing you at a slow pace in the office. (if the inc. will keep paying for these visit that may be the reason they want you to start doing them at home. I would ask the quesiton to be on the safe side.)
if your inc. isn't having a fit about it. the RN's can start showing you how to slowly start doing them once you feel you can do them at home then your Dr. can write out your RX. In the mean time i would go ahead and ask what is in your treatments so you can ask your drug store can they get it for you. If not you can start to call around and find a place that can. i heard from many icer saying they can't get there medicine they needed and no drug store would order it. I think its because there getting it already mixed, but if you mix them yourself it should be easier to get everything you need.
its never to early to start thinking ahead. since it seems like sooner or later you will be doing them at home.
Thanks for sharing some refreshing news on how the treatments are working for you.
sending you hugs and prayers.
Rhonda

[dminton]

Here's an update on my heparin instills: I've been going to the office to have them done twice weekly rather than doing them at home; it's SO MUCH easier with the lidocaine squirted in the urethra first, then the cath, then the lido/marcaine/heparin. Even if I get a twinge during the procedure, the benefits seem to be building in the long run; for example, I always have a worsening of symptoms after sex, about 24 hours later, but this past weekend, it was not nearly as bad and was much shorter-lived. I had 5 days of relief before I felt anything that was bothersome after the last instill! For me, it's remarkable! Just had one today, and having my teeth cleaned earlier was much less fun. So, it's going well, and I hope others can get some relief too. I hope this keeps up! We never know with IC.