Bladder Instillation's

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Some of you might know I suffer with constant bladder pain, I don't want to label it IC but as my urology nurse said its probably what it is. She just ordered a course of treatments (6 for 6 weeks) starting next month. Guess will see if they help. It would be good if I didn't have to use Diazepam suppositories. Hopefully save them for those "bad days."

I do worry some what will happen, if it will eventually help the pain. But hopefully too help incontinence get better. Hopefully not worse!

 

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Hopefully, you will feel much better. Let us know how the treatments go for you.

 

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@Boomersway Where does the suppository go? I read there are vaginas and rectal suppositories, nasal spray, too (which sounds awesome for anxiety). Does the valium relax the muscle tension? What is to occur during the six “treatments”? I wonder if Botox might help your bladder pain.

 

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@snow Rectally I guess its the same suppository that a Woman would insert vaginally. Yes, it helps settle down quickly, as my urology tells me they work faster for you then a oral med. But expensive. So when physically and mentally I cant deal with the pain, I use them.

The infusion nurse told me she will insert a catheter, and insert a small amount of medications that will sometimes help patients start to feel better, but it might take at least 3 weeks to notice. So she inserts and you lay there and hold the small amount of medication, I think like 30 min maybe longer, they have down each appointment is 90 min thou.

I had Botox, only made my urinary retention much worse, so pain for me was worse. I ended up stopping 6 straight caths per day and just went in and they put in a Foley.

 

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@Boomersway Oh dear, on the Botox; I’m so sorry it got worse for you! But I’m glad you at least try everything. I hope your new procedures might help.

 

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Instillations help me a lot. I got a cocktail of heparin, Marcaine, gentamicin, and sodium bicarbonate. My doctor did the first dozen or so in the office, then trained me to do them. I used them for a long time, ranging from daily to weekly.

When I switched jobs three years ago, the new insurance refuses to cover the meds because they're considered injectable and thus fall under the medical, not the pharmacy, benefit. I have tried extensively to get them covered again, but apparently the only way the medical benefits will cover them is it they're given in a doctor's office. I work an hour away from both my home and my doctor's office, so going to regulat appointments is very difficult to manage, and instillations would be way over the top. My doctor isn't willing to supply them to me directly, either, I'm guessing because of medical regulations.

I hope they help you!

 

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@ltapilot I’m so sorry your new insurance is inadequate and mean! How discouraging for you! At least you know that something out there helps: I know Botox is my solution, I just can’t afford it any more.

 

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@ltapilot, cocktail sounds about the same. Infusion nurse told me she was setting up the appointments for me as I mentioned, but my urology PA told me they must be done in hospital only. In many ways I feel they don't trust me to do something like this, as they refuse to let me Foley cath myself, just because I had one mishap. And it isn't that they want the revenue, as I did discuss this with my PCP. And she replied to be they must be done here. So I quit complaining and stating the fact that it was my choice. I did find out way back it wasn't even thou it says so. They make life more difficult. But once you follow through with their orders, everything gets easier and much more positive.

I do have a wonderful team that helps me, basically run by my PCP. She will order me to see different dr.'s and I do now, and I watch my notes and now they reflect I'm pleasant and cooperative. Guess I'm just tired of fighting the system so to speak. And I live very close to these medical services they have arrange to do locally. So much easier for me and caregiver.

My understanding is that if they do help me, they will be done at different intervals, long-term. I do hope they will. Pain really wear me out.

 

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My insurance covers Botox, and doing that reduced the need for instillations. I got much the same level of pain relief from the Botox as from the instillations, and it only required an appointment every four months or so.

So far I'm very happy with my new Interstim. I'm still only two and a half weeks in, but it seems to be doing a great job for me. I've had some pain and urgency since then, but less than before, and no accidents since the surgery (although there have been some close calls).

It's good that there are several different tools available to help people. It's just a shame that our healthcare system makes it so hard to access the ones we need.

 

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@ltapilot I'm curious, when you received that Botox, did you go into full retention?

 

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I haven't full-on retention, but I start retaining about 300-500 ml after a round of Botox. That goes down to 100 ml or so once it's worn off. With my interstitial cystitis, even 100 ml is painful when my bladder is inflamed. Even when my iC isn't terribly bad, is a rare day that I don't cath two or three times just because it's uncomfortable to have a partially full bladder.

 

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@ltapilot I can relate, all though my retention was almost complete, at the time I was working full time and very intense where you couldn't walk out of your office and go and cath. I relayed to my urology nurse PA, she had me come in that day, I went home with a Foley. Yes, my bladder gets very upset with me when I don't follow along. Your comments sing a lot like mine.

 

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I had complete retention after my first hydrodistention. It was very painful, and such a relief when they cathed me. I ended up hospitalized overnight, even though it was supposed to be an outpatient procedure.

I can't imagine having it happen when you weren't already at the hospital! That had to be awful.

 

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Yes, I have had hydrodistention, but my Urologist, kept me overnight, and also kept a Foley in. And pain medications, so my procedure went well.

 

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I get a hydro every eight months or so, and after the first couple they've gone well. I'll be sore for a couple of days, but my doctor is very good about making sure I have plenty of pain meds. I think I ended up hospitalized after the first two, but after that I've gotten out the same day with no problems. I usually go home and sleep.

I haven't explored with my urologist whether my Interstim will eliminate the need for Botox and hydrodistention. I suppose it might, but I don't think that's a given - well have to wait and see.

 

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I have to say, I felt better after the Hydrodistension, but that Urologist has since retired. My current Urologist doesn't believe it will help me. I kinda felt he doesn't believe in hydrodistension period. I wonder if this is the chain they follow, and you have had bladder instlltions,and Hydros. You know how they start with medications then many appointments later they start these other procedures.
By the way what pain meds are given after hydro's?
Are you also kept on antidepressants?

 

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You're right, it seems like a pretty standard progression, more traditional meds to newer meds to anklestim to hydro or botox. I haven't switched urologists, but I always dread switching other doctors just because they so often want to go through all the preliminaries again. I'm going through that now with my gastroenterologist to some extent - he's trying to be too conservative in his treatment plan for where I am in my disease progression. I dread having to change urologists, since the new one will probably want to run a bunch of tests again to decide if it's "really" IC. Fortunately my urologist has told me that she not planning to retire anytime soon!

I'm on antidepressants, but that's because I've had major depression for my entire life. I'm not sure they help much with that, but they aren't hurting anything. I've been given tricyclic antidepressants for my bladder issues (amitriptyline, if I remember correctly) but didn't stay on it because it didn't seem to help. Same with Elmiron (all that did is thin my hair and push my hairline higher on my forehead; my wife says it's a great look, but I'm not completely convinced!)

For pain meds, they usually give my hydrocodone since I'm allergic to oxycodone. I've been given hydromorphone before, but I think that was for pain from my liver disease. A big problem that I have is that I take naltrexone for the itching caused by my liver disease (extreme, all-over-my-body itching that causes me to scratch until I bleed), and naltrexone blocks the effects of opiates. I have to stop it a week before a hydro, and put up with the itching until I can get off the pain meds. After a couple of days off, I can get back on the naltrexone and get the itching back under control.