Interstim or botox thoughts?

[Edgewater]

My version of U-IC (car crash) is not affected by either method. There is a study underway in Switzerland that bypasses the L5/S1 spinal connections, but it will be at least four more years for the study to complete and the first to receive the bypass will be those with lower limb connection issues.

 

[mirrored22]

So my urologist recommended interstim but I am really worried about the complications and rate of ineffectiveness. It sounds like it loses effectiveness by 5 years for many and about a 1/3 end up with some sort of complication. It doesn’t sound like it is so effective that it eliminates needing diapers for most. 50% effective means I just go from 4 diapers to 2 diapers instead. It just decreases the amounts. He recommended against Botox due to some retention at baseline. So I think I’m going to hold out on interstim for a while and see if some other better technology comes along. Has anyone else decided against doing more and just accept the status quo.

This is pretty much where I landed as well. It has the potential to introduce new complications and doesn't eliminate the issues completely. (I do know that 50% is the minimum threshold that they use to install the device permanently, so if you don't get at least 50% during the test run, they don't continue with the permanent install.) But I also know that it can be really effective. I've spoken to a few people who have had dramatic improvements from the Interstim devices, going from not being able to leave the house due to incontinence to being able to actually live their lives in one case! So I don't want to dismiss the effectiveness of these treatments for people at all.

For me personally, I feel like my overactive bladder issues aren't so bad that it is absolutely necessary. I also have more steps that I can try with different lifestyle changes (quitting smoking, losing weight, getting into better shape, caffeine reduction, etc.) before I go to that drastic of a route. Being only 36, I really want to enjoy what little is left of my "youth" before having devices implanted or having to deal with Botox and catheters considering I'm sure the prostate will become a problem later. I also haven't even tried things like pelvic floor relaxation therapy either, but my urologist doesn't seem to think either of these will be effective and is pushing me towards the Interstim or PTNS options. To answer you question, no, you are not alone!

 

[EcoIncon]

I'm sorry I've been traveling and didn't see this thread. I have a little bit of information not covered here.

BLUF: I've avoided drugs to manage incontinence but from research and personal experience, I'd recommend at least trying Botox once.

My first round of Botox was last fall and similar to @Pino it was life changing for about 3 months. From 8 days after the procedure until the 4th month, I had zero daytime episodes of incontinence. While I've come to accept diapers as a good solution for my issues, I can't tell you how liberating it was to get a break from them (it'd been about 20 years since I'd been in public without protection). In addition to not having the diapers, the relief from feeling like I have to go to the bathroom as soon as 5 minutes after the last time was so nice. I can't wait till 3 weeks from now when I get my second dose.

I have some thoughts and learnings related to administration of Botox:

• Important note on Botox: Doses range from 100 units to 300 units.
  • Many urologists start with the 300 unit dose because it is the most effective and generally lasts the full 6 months that are required between doses. This dose has a retention risk over 20% but you don't need to start there.
  • I started with 100 units because that dose has a low risk of retention (~4%). A 4% risk of ISC for a month or two was so worth a shot at continence for me.
  • I'm getting a 200 unit dose this time which adds a 5% risk of retention for folks that tolerated 100 units well. I'll take my chances as it increases the odds of getting 5-6 months of relief.
  • Maybe if 200 units goes well, I'll try the 300 unit dose. I don't understand why more urologists are not taking this more conservative approach to Botox therapy. Maybe because it gives very few people relief for the full 6 month dosing interval... I was happy with 3 months and I'm happy that I didn't take the retention risk.
• Botox can be administered to men by some providers without general anesthesia. My first administration was done under general anesthesia... I was having surgery anyway so I got a BOGO deal for my anesthesiologist - they didn't have any other coupon codes available so getting both done at the same time was my only option . I'm getting my next dose without general anesthesia so if anyone is interested, I'll post after that experience - I'll also try to remember to ask what allows them to do without general anesthesia versus those that mandate it and report back.
• The only thing I noted about the treatment was a little burning when I peed for about the first 24 hours.

InterStim: I did the InterStim trial too and it helped but didn't solve it. I never got the implant but the trial cut down a lot on my urgency and leakage. Through Medtronic's program, I interviewed about 7 people that were their posterchildren for the relief provided by InterStim - everyone I interviewed reported a reduction in urgency and leakage and said they had great relief. While many were able to cut down from diapers/pull-ups to pads or low absorbency underwear, not one of the people I interviewed said they were able to completely ditch protection. I decided that all of the limitations on activity with InterStim, the cost of the implant, the declining efficacy of treatment, the difficulty reversing the treatment, etc in combination with that lack of knowing it would be a complete fix caused me not to proceed with the treatment.

 

[mirrored22]

I'm sorry I've been traveling and didn't see this thread. I have a little bit of information not covered here.

BLUF: I've avoided drugs to manage incontinence but from research and personal experience, I'd recommend at least trying Botox once.

My first round of Botox was last fall and similar to @Pino it was life changing for about 3 months. From 8 days after the procedure until the 4th month, I had zero daytime episodes of incontinence. While I've come to accept diapers as a good solution for my issues, I can't tell you how liberating it was to get a break from them (it'd been about 20 years since I'd been in public without protection). In addition to not having the diapers, the relief from feeling like I have to go to the bathroom as soon as 5 minutes after the last time was so nice. I can't wait till 3 weeks from now when I get my second dose.

I have some thoughts and learnings related to administration of Botox:

• Important note on Botox:Doses range from 100 units to 300 units.
  • Many urologists start with the 300 unit dose because it is the most effective and generally lasts the full 6 months that are required between doses. This dose has a retention risk over 20% but you don't need to start there.
  • I started with 100 units because that dose has a low risk of retention (~4%). A 4% risk of ISC for a month or two was so worth a shot at continence for me.
  • I'm getting a 200 unit dose this time which adds a 5% risk of retention for folks that tolerated 100 units well. I'll take my chances as it increases the odds of getting 5-6 months of relief.
  • Maybe if 200 units goes well, I'll try the 300 unit dose. I don't understand why more urologists are not taking this more conservative approach to Botox therapy. Maybe because it gives very few people relief for the full 6 month dosing interval... I was happy with 3 months and I'm happy that I didn't take the retention risk.
• Botox can be administered to men by some providers without general anesthesia. My first administration was done under general anesthesia... I was having surgery anyway so I got a BOGO deal for my anesthesiologist - they didn't have any other coupon codes available so getting both done at the same time was my only option . I'm getting my next dose without general anesthesia so if anyone is interested, I'll post after that experience - I'll also try to remember to ask what allows them to do without general anesthesia versus those that mandate it and report back.
• The only thing I noted about the treatment was a little burning when I peed for about the first 24 hours.

InterStim: I did the InterStim trial too and it helped but didn't solve it. I never got the implant but the trial cut down a lot on my urgency and leakage. Through Medtronic's program, I interviewed about 7 people that were their posterchildren for the relief provided by InterStim - everyone I interviewed reported a reduction in urgency and leakage and said they had great relief. While many were able to cut down from diapers/pull-ups to pads or low absorbency underwear, not one of the people I interviewed said they were able to completely ditch protection. I decided that all of the limitations on activity with InterStim, the cost of the implant, the declining efficacy of treatment, the difficulty reversing the treatment, etc in combination with that lack of knowing it would be a complete fix caused me not to proceed with the treatment.

Thanks for that insight, I really appreciate it. I would love to hear how the 200 works for you. I can't even imagine what life would be like without these urges!

 

[daylight]

I agree with @EcoIncon and others, if you (@mirrored22) are a candidate for botox, you should consider it. Experiences differ, had it done w/o anesthesia, a bunch of pinches, and a bit sore afterwards (1-2 days). Agree, it was liberating, even considering that within two weeks I was in full retention and needed to self cath. for 5 months. It was a good vacation not having to wear diapers. Would I do it again? Planning but, my work doesn't allow for easy breaks to catheterize.

My biggest takeaway was that it helped with the pelvic/bladder pain.

InterStem was offered up to me when it first hit the market some 20-ish years ago, it has evolved with MRI safe implants, charging, etc. I think the decision is personal and choices of others should not greatly influence yours. Degrees of success is also personal, going from a diaper to underwear or a pad to nothing can be a great improvement.

 

[EcoIncon]

Thanks for that insight, I really appreciate it. I would love to hear how the 200 works for you. I can't even imagine what life would be like without these urges!

Wow... I had 200 units a week ago. I was in urgent care yesterday and am retaining over 300ml. I feel like I need to pee all the time but most of the time I can't or only a dribble comes out. After a brief chat with the on-call urologist, I was told this is likely to only last a couple weeks. I'll have to go back Urology this week to find out more.

What a difference between sudden urges to go and this. I don't have incontinence right now... but as they say the cure is worse than the disease. The 100 unit dose was amazing... 200 not so much for me.

If anyone wants, I will provide further updates on this.

 

[Eclectic]

Wow... I had 200 units a week ago. I was in urgent care yesterday and am retaining over 300ml. I feel like I need to pee all the time but most of the time I can't or only a dribble comes out. After a brief chat with the on-call urologist, I was told this is likely to only last a couple weeks. I'll have to go back Urology this week to find out more.

What a difference between sudden urges to go and this. I don't have incontinence right now... but as they say the cure is worse than the disease. The 100 unit dose was amazing... 200 not so much for me.

If anyone wants, I will provide further updates on this.

Yowzers! Yes, keep us updated. So I guess you are self-cathing now? I’ve been cathed in the hospital for surgeries and for various tests and I don’t like it at all. This would be my big fear with Botox.

 

[EcoIncon]

Yowzers! Yes, keep us updated. So I guess you are self-cathing now? I’ve been cathed in the hospital for surgeries and for various tests and I don’t like it at all. This would be my big fear with Botox.

I’m not self cathing yet. They wanted to give me a foley for a few days. I declined. I’m pushing tons of fluids and taking prophylactic antibiotics until I can get in this week. Then I’ll know more

 

[Diaperman95]

I'm sorry I've been traveling and didn't see this thread. I have a little bit of information not covered h

InterStim: I did the InterStim trial too and it helped but didn't solve it. I never got the implant but the trial cut down a lot on my urgency and leakage. Through Medtronic's program, I interviewed about 7 people that were their posterchildren for the relief provided by InterStim - everyone I interviewed reported a reduction in urgency and leakage and said they had great relief. While many were able to cut down from diapers/pull-ups to pads or low absorbency underwear, not one of the people I interviewed said they were able to completely ditch protection. I decided that all of the limitations on activity with InterStim, the cost of the implant, the declining efficacy of treatment, the difficulty reversing the treatment, etc in combination with that lack of knowing it would be a complete fix caused me not to proceed with the treatment.

I did the interstim back in 04 0r 06 (I don't know as my memory is that of a goldfish), but it helped me a lot even with the pain of IC (interstitial cystitis)
infact getting some relief of the constant spasms and feeling the urge every ten min was the reason I went ahead and the device implanted. But it was short lived, it got super infected and it kept coming back and after 3 hospital stays and a lot of pain I told him to just take it out. I had over a quart of fluid in my hip around the implant. It took months of antibiotics to get past it. I had it in me a total of 4 months and it helped a lot with spasms and my IC but not worth the pain and becoming septic. It got into my blood. But I had a mishap with the trial and torn a few stitches out. You know the wire where they do the loop in the hip so they can connect the implant latter? Anyway I was working and lifting 100lb tubs when they told me to keep it at 15lbs and do office work. The wire popped out of the skin and got infected. But the doctor doing the surgery decided to provide with the implant and washed the pocket out with antibiotics. With in two weeks the infection was horrible bad. It was a bad call on the doctors part. But I do now for a couple of years
have a similar device implanted in my stomach to help with sever gastroparesis. It was life changing!!!! I went from staying 8 weeks a year in the hospital for the the 3 years prior to about 2 weeks total in the last 2 1/2 years. SO 24 weeks to 2 it made a huge difference. I use to get so sick I would have to have a NG tube for 3 or 4 days to give my stomach a rest and stop the every 5 min dry heaves I would get. Several times I went 20 plus hours dry heaving every 5 to 10 min prior. I still have the disease and it still gets me sometimes but not like that. At one point I really considered taking my life. I know that is wrong to think but my word I would not wish that HELL on anyone. So I do see interstim good for some people but from my research a lot of people end up with infection. Then you have to have it cut out and replaced every 5 to 7 years. My battery on my tummy is at half life already.

I’m not self cathing yet. They wanted to give me a foley for a few days. I declined. I’m pushing tons of fluids and taking prophylactic antibiotics until I can get in this week. Then I’ll know more

My bladder is very weird and one of the other reasons for interstim was retention. My bladder will not complete empty it use to retain about 200cc and any thing over that I cant hold but under that I cant relieve. The interstim did let me completely empty now after giving into the urges all of these years and letting nature happen and 24/7 diapers my bladder has shrunk to only hold about 200cc and the walls have thicken and became hard & the interstitial cystitis makes the walls pitted and thick too. But I still retain about 50 to 75cc that just will not come out on its own, so I really only have a 150cc capacity or so. I pee a whole lot. The bad thing about retention is it will cause bad UTI's. like a mud hole that never empties it becomes stagnant and infection will grow. Also if you retain too much it can damage the kidneys. So once a day before I diaper for bed I pass a catheter to empty my bladder. I use to do it more times a day to try and stop the spasms but I came to the conclusion it will spasm anyway. Lol but passing a self cath is easy and does not hurt if done right. I would rather pass a cath than get a shot to be honest. Foley's are very annoying and a breading ground for UTI's. Selfcath is way way better. So if you need to do it don't be afraid. It is way better than walking around with a full bladder, and way better than wearing abag. I am 48 and have used them from age 19.. If you have any questions on it hit me with a pm.

Sorry the Botox did not work out so great. Hopefully it will get better, just don't let the retention get to bad..

 

[Pino]

What a difference between sudden urges to go and this. I don't have incontinence right now... but as they say the cure is worse than the disease. The 100 unit dose was amazing... 200 not so much for me.

Oh, i wanted to ask for a higher dosis, i am getting 100E at the moment and i need to cath after it for some weeks to month. No full retention though, but about 50%. I think 200E will get me nearly full retention as well, but i do not mind the self cathing.

Please get yourself at least some samples of catheters to empty you bladder completely at least two times a day.

Try out as much as possible, the differences are enormous! I tried about 20 different types minimum, until i found the one i like to use.

For me it is Nelaton, flexible, water based and 16ch. That is not for everyone.

 

[Bigbabybret]

Yeah, everyones body is different and one might work great with botox and another not at all, i didnt have any great results with it myself.

but, yes if your retaining that isnt good, bad on the kidneys and other things, the pain is your body saying something is wrong.

But, for sure if you ever retain till there is pain, you need to do something right away, its not something you should be waiting for at all, go into the er asap they will cath yyou asap as well...

But, if you are on this method of therapy this is a common side effect and it can change all the time and one month you are perfect and the next time you are not good at all and no dose change, this happens.

I'd sggest that anyone on this type of treatment have some caths onn-hand and the knowledge to use them, as this can happen at random, having the tools on hand is a good thing and if there is a problem the quicker its alleviated the better it is for your body as well.

Just my 2 cents, have some caths on-hand just in case!

 

[EcoIncon]

@Diaperman95 thanks for the thoughts. I am sorry you are having so many challenges... especially a couple years younger than me. I am totally with you on an intermittent cath being better than a foley. Foley catheters have put me in the hospital both times I've had them. I wasn't being cavalier about rejecting them. I'm being super careful to make sure I don't get too full, measuring input/output, etc.

@Pino - I'll let you know how long I have to cath for. I'm expecting to have to do it and while I'm not looking forward to it, it's better than a retention UTI. I'll look for samples as soon as i get the prescription. I'll also let you know if you want how much longer the 200 unit dose lasts than the 100. Honestly, the 100 was ideal for me for 3 months. From where I'm at today... I'd rather go through the procedure every four months and wear a diaper for a month than cath for a month every six even if I get full relief from incontinence.

@Bigbabybret - heard you on your very solid advice on taking retention seriously. Thanks for the tip. I wish the people providing the Botox were as wise as you about teaching me to self cath and having me get a couple as a bridge in case. An ounce of prevention is worth a pound of cure.

 

[Pino]

From where I'm at today... I'd rather go through the procedure every four months and wear a diaper for a month than cath for a month every six even if I get full relief from incontinence.

I am here with you. I get it once a year now, in June, so the hottest month of a year i can get along without or with very discreet diapers / pants.
The effect will last three month (incl. ISC) and getting less the next three until i feel no difference. During autumn and winter i take diapers.

 

[EcoIncon]

I am here with you. I get it once a year now, in June, so the hottest month of a year i can get along without or with very discreet diapers / pants.
The effect will last three month (incl. ISC) and getting less the next three until i feel no difference. During autumn and winter i take diapers.

That is a really good idea! The only time I find diapers really inconvenient is in the summer when I run outside, work in the garden, go hiking, etc. Certainly I'd prefer not to depend on diapers but it's only the summer months that I really lament my situation. Maybe I'll join you on the once a year program.

 

[EcoIncon]

So I had my appointment 8 days after my initial injection or 200 units. I figured I'd share this experience for those of you looking in this thread for thoughts on BOTOX and what happens if your therapy is "overly effective"... Yes... someone used that term. I debated the validity of that term with them extensively. I would have said "failed" or something closer to that.

I was told to arrive with a full bladder and I guess I complied... I had 780ml in my bladder when I showed up at the office!!! I was wearing a diaper because when my bladder gets this full, I now get leakage from overflow incontinence... It's just a constant drip instead of large spasms but I'm right back in a diaper for now (I could probably get away with any pad as the flow is very slow)... plus now I have an added "bonus"...

I was asked to empty and leave a urine sample. I emptied as much as I could and they rescanned me to show a residual of 450ml... that's way too much. The doctor came in and informed me that for the next 3 weeks - 3 months, I would need to self-cath at least 3 times a day. I was told this is to avoid distending the bladder (which evidently can prevent nerve repair in the bladder). He let me know the medical assistant would be in to give me a crash course in CISC (clean intermittent self-catheterization)

The medical assistant brought me 12 sample catheters of 16fr Straight Tip Coloplast SpeediCaths as well as one to demonstrate the process. I was asked to stand over an absorbent mat and pull down my pants. I was taught how to keep things clean, open the catheter package and insert it into my urethra.

As for the insertion process... I've had others insert catheters into me and the process has been so painful. This was not. I hit some resistance at my pelvic floor and at my prostate but I was able to relax and push through. When others have done this to me, it has hurt much more (I assume because they have a job to do and are less patient than I am to avoid the pain). Finally in my bladder, all of the retained urine came out. I haven't felt so relieved in a week.

I'll report back as soon as I'm able to relieve myself again somewhat normally or if anything else notable happens.

 

[Eclectic]

Thank you for updating this thread. Interesting experience with self-cathing. I too have only experienced extreme discomfort when others have cathed me. I have to admit, a summer Botox program sounds appealing just to be mostly diaper free during the day in the hottest months. I thought I had read somewhere that Botox injections lose their effectiveness over time. Anyone know about that? Also, I have to wonder if my bladder nerves are quieted down, will my bowel nerves follow suit?

 

[PadPhilosopher]

What you have to remember about doctors is all they work for is fixing things and I understand that they don't understand why you would want to just cope with something, it's because coping with something doesn't cause any further problems where as introducing something new into the equation can create further complications.

This is what I detest about modern medicine. I'm going to leave it at that and not get myself in trouble.

Thanks guys for your impressions and thoughts. Looking at this thread and other impressions from other support groups, I get the impression that it's not a cure all at all. Pretty much every remedy for this out there is suboptimal and the idea I had of living life without these problems is not really a possibility, a realization that is both brutal and freeing, as I can just stop feeling guilty for managing this my way.

I feel like I want to avoid retention so don't want to risk botox, and I'm too young to be a cyborg with the interstim. Not when there is more I can do to try and fully exhaust lifestyle modifications and when I have diapers as an option to manage. So thank you all for your insight!

If I were in your shoes, I would do exactly the same, for exactly the same reasons.

I do not understand those who would choose retention and ISC over leaks and diapers. I've done self cath, and no, it doesn't hurt, but there is a significant risk of UTI and kidney damage, and a good diaper plan doesn't require any more planning, but is a great deal less risky. I realize that some people are very sensitive to heat, which I'm not, being always cold, and can see where that might change the dynamic for some. Still, the relative risk doesn't make sense to me. But, I respect others' right to choose differently than I would, and perhaps if I lived their reality for a couple of decades, it would make sense to me.

Pain is a different matter entirely. I've experienced pain there from UTIs, and understand fully how disruptive that can be, and the near desperation to make it stop. My heart goes out to those who have to deal with nagging pain, and for that, I think trying things makes all the sense in the world. I hope everyone dealing with it finds a good solution yielding total relief.

So, @mirrored22 live your life to the best of your ability with the curves it's thrown you, and don't let anyone, no matter how well educated or intentioned, tell you you're doing it wrong.

 

[mirrored22]

Thank you for sharing your recent experience, @EcoIncon. That sounds horribly intense and unpleasant and I'm sorry you had to go through that. Definitely keep us posted. That kind of experience sounds pretty terrifying honestly and I think I am right to want to avoid retention as much as I can. At the very least it seems like self-cathing isn't that bad of an experience once you get a grip on it. With how my issues are, I imagine that at some point in my life I am going to have to deal with eventually.

So, @mirrored22 live your life to the best of your ability with the curves it's thrown you, and don't let anyone, no matter how well educated or intentioned, tell you you're doing it wrong.

Unfortunately, the main person who is critiquing how I am managing my incontinence is me and its hard to ignore myself! But thank you!

 

[PadPhilosopher]

Thank you for sharing your recent experience, @EcoIncon. That sounds horribly intense and unpleasant and I'm sorry you had to go through that. Definitely keep us posted. That kind of experience sounds pretty terrifying honestly and I think I am right to want to avoid retention as much as I can. At the very least it seems like self-cathing isn't that bad of an experience once you get a grip on it. With how my issues are, I imagine that at some point in my life I am going to have to deal with eventually.


Unfortunately, the main person who is critiquing how I am managing my incontinence is me and its hard to ignore myself! But thank you!

Pay attention to the right part of yourself; this part:

"Pretty much every remedy for this out there is suboptimal and the idea I had of living life without these problems is not really a possibility, a realization that is both brutal and freeing, as I can just stop feeling guilty for managing this my way."

You can, and you should. Whether or not I agree with your analysis that the potential benefits of additional medical treatment are not (currently, at least) worth the risks, (though I do agree) this is the conclusion you reached, and you should move ahead with it unless or until some additional information changes the equation.

 

[EcoIncon]

Thank you for updating this thread. Interesting experience with self-cathing. I too have only experienced extreme discomfort when others have cathed me. I have to admit, a summer Botox program sounds appealing just to be mostly diaper free during the day in the hottest months. I thought I had read somewhere that Botox injections lose their effectiveness over time. Anyone know about that? Also, I have to wonder if my bladder nerves are quieted down, will my bowel nerves follow suit?

I don't have nearly enough experience to personally say whether the injections lose effectiveness over time. I've read similar to you that they do and my doctor even said that it is possible but that was when I asked about many years of therapy.

I also can't address the topic of your bowel from any position of experience or expertise. What I do know is the ability of Botox to penetrate tissue when injected into a muscle is in the tens of millimeters... So I would really doubt anything from Botox injections would affect your bowels (and I don't think that would probably be a good thing if it did...)