bladder Botox overdose

I don’t even know yet if it is the Botox. I’d pay more attention to the fact that it’s worked for me for 6 to 7 years flawlessly than to this one incident. I don’t think anybody has still answered my question. Somebody said that when you have urine retention, it just feels like urine retention? What dies that mean? Does urine retention *hurt*? I am in a lot of pain. I am still peeing but I don’t think it’s as much as I should be.
 
What I feel like I have is exactly like a UTI feels like, but they keep telling me it’s not a UTI! If I have bili, red blood cells, white blood cells, 2+ kinds of bacteria (even if it won’t grow), and leukocytes present in my UA, how is that NOT a damn UTI?!

THIS.
HURTS.
It is distracting 24/7 for the past two weeks and six days. I have been getting it che Jed out going back to 12/21.

I don’t just feel like I have to pee. I feel like my bladder is a water ballon filled to the max and about to explode. Or, like someone is stepping on a brick over my bladder.
 
Hi Snow,

retention often doesn’t hurt - that’s why it’s pretty dangerous. A friend of mine nearly died due to retention and the following reflux. Hi just was lucky enough that his wife found him and called the ambulance. And to the self cath problem: You might wonder - but there are many women out there that need to do this. Yes - it’s a bit more complicated and you need a mirror - how ever for man it’s more dangerous because there’s a higher risk to hurt the urethra because it’s longer and there is the prostrate in between…
 
Snow, have you ever been tested for Interstitial Cystitus? I understand how most of these terrible things have happened to you, but IC happens and they don’t know what causes it. It can be extremely painful and none of the pain drugs I’ve taken in the past have ever put a dent in the pain. I don’t test positive for UTI’s or anything else.
 
@Kathylp I’ve had IC testing - I think - I had cystoscopy and urodynamics but it was six years ago. I’ve never been told I have IC. I have severed nerves between my bladder and my spine (Neurogenic Bladder), which causes OAB, Nocturia, and bladder spasms. Part of me is starting to wonder that if urine retention doesn’t hurt (thank you very much for clearing that up @MichaelDahlke), then maybe that’s not what’s going on at all - because I’m in a lot of pain.

When I lay on my left side, the pain goes away instantly. What if this some new pain from needing my hips replaced?! I’ll learn more tomorrow. I was going to go to my Urologist today but we’re getting another Snow Squall (yes, there really is something worse than a Blizzard) in the next hour which would mean I’d be driving home from the doctor in rush-hour traffic on roads of pure ice. I did that last night and I cannot put myself through that again already, not when I’m in this much pain.

Is anyone aware of any kind of intestinal things that might feel like this? This doesn’t feel like any other kind of intestinal problem I’ve ever had (neither diarrhea nor constipation), and it’s unilaterally on both sides of my body. But pain can get referred from one side of the body to the other. I hope they can figure this out tomorrow but it may be a longer journey.

My doctor gave me permission to take my puny muscle relaxer Tizanidine during the day to try to help my bladder because it helped last night. I usually take it for joint pain but last night I noticed it helped with the bladder pain, too.

Thank you again for your care, concern, and help everyone. I trust you as much, if not more, than my own doctors!!!! We’re a great bunch of brainstormers!

I hope this ends up having nothing to do with Botox so then the rest of you won’t be prejudiced against it. Botox really is a miracle.
 
@snow Pain on left side and pain going away lysing on left side is typical for ulcerous colitis. I have experienced that many times. Maybe some of the treatment have affected your bowel?

If I remember correctly you complained about diarrhea as well - another sign of UC.

I hope that is not what causes the pain - you have enough…
 
@Allan_59 It could be UC, though the pain is equal on both sides. I will see if I lay on my right side if the pain also goes away like it did when I laid on my left side.

I’ve had diarrhea on and off, but mostly on, for the past five years. It started when I had COVID for 6.5 months, which may have just been a coincidence. But I think the reason behind my near-daily explosive diarrhea is that I take so much Aleve and Tylenol (1000s of mg per day for the past 14 years nearly non-stop). These medications destroy intestinal walls. When I take extra Aleve or Tylenol, my diarrhea worsens, so I figure they are related. So far my liver and kidney labwork has always been healthy, knock-on-wood. When the time comes that they tell me I can no longer take Aleve (Naproxen) I wouldn’t be able to get out of bed every morning because of the severity of my back, hip, knee, and feet, and pelvic pain, but mostly back - no exaggeration. I know that day is coming and I dread it very much. I’m hoping to make it to age 65 before it gets that bad. Once I can no longer take Aleve, I would likely need to move into a permanent, inpatient, crappy, American institutionalized nursing home for rest of my life - which I’d kill myself first before agreeing to do. My grandma spent the final 20 years of her life living like a prisoner in those places. I refuse to let that happen to me. There’s no way I’m going to put up with that because that’s not life; that is something worse than death. Those places are prisons, including the bad food.

Or, maybe if they tell me I can’t take Aleve any more, mayve then tha will finally be the point when I’ll be slightly more willing to try useless spine surgery. Hopefully by then, some better lumbar spine surgery solutions will have been invented, but I doubt it. As a species, our spines are a reprehensible experiment in pain and dysfunction that becer should have come into existence. There’s no such thing as survival of the fittest. Well, maybe, but we are certainly not the fittest. My cat is my age and more fit than any of us with our back and joint problems.

Fortunately, I am always able to get my diarrhea to stop promptly, within an hour, by drinking a half bottle of liquid Imodium as soon as I get the forewarning of the all too familiar stomach pains. The other name for it in the U.S. is Loperamide Hydrochloride oral solution 1 mg; not sure if you have something like that there. Here it is sold “over-the-counter” without a prescription. The directions say to take 1.5 Tablespoons (22 mL, roughly 0.75 fluid ounces) after each bowel movement, then to keep taking another dose after each following bowel movement. I no longer bother waiting around for diarrhea to ruin my entire day. I simply go straight to drinking half the bottle as soon as I get my first symptom. The diarrhea ends within 30-60 minutes, and I can get on with my day. Fecal incontinence is infinitely worse than urinary incontinence, and my heart truly goes out to folks who experience fecal incontinence more often in public than I do. It usually happens for me when I am alone at home in the mornings so it goes away by the time I have to leave the house, but when it strikes out in public, or at work, it’s really horrible. I have certainly had a few significant fecal incontinence accidents in public in my past.

@Allan_59 I will bring up the possibility of UC to my Urologist tomorrow. How do they test for that? How do they fix that? I am coincidentally 2.75 years overdue for my first ever colonoscopy. Because of my family history of a bit of colon cancer, I have to get the big test and can’t do Cologuard. I’ve made my peace with that. Some of you may recall my post from about six weeks ago where I wrote about my scheduled colonoscopy. It was due to happen not long before I was scheduled for my knee replacement. When I found out that I’d have to stay awake all night alone, I realized I did not have the time nor energy to accomplish that between then and surgery, so I tabled it for 2024. People might say, well, just sleep it off the next day. Take a lot of naps the next day and you’ll be fine by the next morning. But that doesn’t work for me. I’m so horrible of a sleeper that I can’t take naps; i just lay there accomplishing nothing. When I get my colonoscopy it will demolish my energy for an entire week so I need to plan well for that. I reckon I’ll be a zombie!

Yet another medical thing I need to accomplish this year. I really don’t know how or why I keep going on. My survival instinct must be so strong but I don’t know why, because I don’t really think I’m that worthy of a being a survivor. No children, no spouse, totally estranged from my only sibling, very tiny family. The survival instinct must be the Mormon pioneer blood coursing through my veins, though the religion itself does not.

@Kathylp. I googled them. Looks like I’ve had them all done, but not in the past six years. Maybe it’s time for new testing. The symptoms do sound *exactly* like what I’m experiencing, except they don’t include my severe Nocturia, but maybe that’s just something old and there’s something new wrong.

I shared with you Peeps that I recently found out both both of my hips also need to be replaced. I’ve had a lot of extra and unusual, increased back pain in the past few months, which I thought was just from over exertion because I’ve been doing some extra physical labor projects. but my orthopedic surgeon actually says it’s the degradation in my hips. When you entire standing bones system is messed up, it can absolutely affect everything that your bone support, including your bladder and your intestines. Maybe this new bladder pain is somehow related to my new inner hip pain and I’m mistaking it for bladder pain. One way to test that theory is to get cortical steroid injections in my hips to see how much relief they bring in my spine and entire pelvis. I was going to wait until April 1 when my health insurance changed to do that but maybe I’ll have to get it done earlier.

Since the last post I wrote, I have been standing on my feet for about the past hour to see if I could get some bladder pain relief by standing up, in other words, by altering the position of my hips. I have experienced probably a 30% reduction in pain. Weird!

I am so wiped out.
 
Hi Snow,

for the diagnosis of UC, blood and stool samples are taken in addition to a physical examination. If there is any indication, a colonoscopy can follow or further examination with ultrasound or MRI.

It's good that you have the urologist appointment. She can determine the residual urine in any case. If there are any indications of urinary retention, I would definitely have the kidney values determined during the blood test (because of UC - no idea whether the urologist will do this...). If there are problems with the kidney values, my recommendation would be to at least have a reflux cystography or a video UD done again to make sure that there is no reflux and that the kidneys are not affected.

If it is "only" a flaccid bladder due to too much Botox, then you often have to cathartize anyway because the risk of cystitis increases rapidly with too much residual urine.
 
@Snow As Michael says, it is blood and stool samples and then colonoscopy. There are research on replacing colonoscopy with MRI and ultrasound, but I am not sure that it is able to replace colonoscopy yet. There are many medications for UC, so it is typically a period with trial and error - finding the mildest medication to do the job. It is typically more side effects with the stronger medicine.

I am using Imodium and Loperamide (not the mixture) - they can also be purchased here without prescription. I use it only as a last option when accidents are “impossible”, but these medicines gives me much worse stomach pain and I have no control when the stopping effect end. I have had my worst accidents (in public) after Imodium use. Even with active uc and frequent diarrhea I have some sort of rhytm - I can to some extent control it with eating basic and boring food… and make sure I allow time between eating and doing something. Using Imodium the kind of predictability is gone and I have much bigger BMs. It has tricked me many times - leading to big accidents at home and in public. That is my low points with uc.

Also for me the worst time is the mornings - with bad periods following any intake of food or fluid. If the reason for your diarrhea is uc, I think it is important to verify that and start medication. One thing that has helped me is some physical activity - walking, many use yoga - it helps keeping the bowel healthier, but I understand it is not easy for you with your physical issues. The pain you describe is kind of familiar. One question - do you have any blood in your stool? Not fresh due to ruptures and soreness, but darker blood?

I can agree that my bigger fecal accidents are the worst I have experienced, but when I am going 20-30 times a day, the amount varies but in general are not big and can contained by a large pad or pull-up. Compared to these frequent accidents, loss of a full bladder can be as painful and humiliating if you are not protected. Incontinence is bad and we don’t have to grade what is better or worse, it depends on the situation.

But the stigma on use of diapers and incontinence is making this worse. As long as I wear proper diapers I can manage the accidents and go and change, but the fear of showing the need for diaper - leads to wearing smaller pads or pull-ups and that is when you have both accidents and leaks - so you need to change both diaper and clothes.

I hope you get this checked @snow - I hope there is another explanation - as you have enough already, but better to know if uc is the problem.
 
Thanks guys, yes, I will certainly mention my diarrhea to the doctor who performs my first colonoscopy. I have not seen any blood in my stool. All of my bloodwork is healthy and normal. I had it all checked in September and also on Dec. 21.

@Allan_59 Sorry to hear you get backlash from Imodium. In my case, it leaves me constipated for several days then the diarrhea comes back with a vengeance. So I try to use it only if I’ve had diarrhea at least five times consecutively and need to leave home. You’re correct; with needing four joints replaced, having a demolished spine, and having plates and screws in one foot, walking doesn’t come easily to me. I do it when I need to, for shopping for instance, but not for exercise. I also find it incredibly boring and slow; wish I could bike or do yoga. I will be starting a special gym at an orthopedic hospital where I’ll be supervised by physical therapists and nurses so I don’t worsen my conditions. It’s called Arthrofit.

Last night after I took the Tizanidine muscle relaxer, tons of urine came out and the pain I was feeling left my body entirely. So maybe Tizanidine will be my way to avoid self-cathing.

Everyone remember this for the future: if you’re in a situation where your doctor tells you to self-cath: tell them you’ve heard a very mild muscle relaxer called Tizanidine will work just as well. That’s far safer than self-cathing, which almost always leads to UTIs and scarring.

I’ll let you know what happens today at my urologist. I can already feel the pain building up again today. I will not take the Tizanidine again until after I see her so she can get an accurate measure of my retention.
 
Dear @snow it is terrible when what we know is working, is impossible because other parts of our body is creating issues. It is good to hear that you are exploring options that you can do that does not hurt you or make things worse for you.

I am happy that the muscle relaxer gave you some relief. I think it sounds much better than self-catching, which to me sounds scary.

I hope your urologist can shed some light on what is going on, and that you are spared from uc. But even without the inflammation part of uc, you may have ibs. The symptoms are very similar, but the cause is more unclear. But I wonder if your bladder and spine issues could also trigger IBS.

Your experience with Imodium is very similar to mine - it is a silver bullet for a couple of days, as it cures all bowel issues. And I also had for a long time good experiences only as my diarrhea came back gradually - so that I knew what was going on. But I have had several issues were it ended with out any warning - and with a big BM leaving me desperate and crying from shame, embarrassment and frustration. On a few occasions this has happened when I was completely unprepared - and unprotected. And a big bowel accident in your pants is not what you wish on your worst enemy. So I have learnt the hard way that it is NOT safe to go without a diaper after using Imodium and being back at my regular schedule.
 
@Allan_59 Yes, I could have IBS, but if so, I think it’s caused by Aleve. If I take extra, I get diarrhea. If I take less, I don’t. My brother, dad, and I all suffer from severe anxiety and we all have diarrhea often.

Yes, my spine, pelvis, and hip problems could all be affecting my bowel movements.
 
@snow I hope they find the reason for your problems and that it can be cured in a better way than large amount of imodium. It is ok for a one and then diarrhea, but not for regular use. And it may lose its Power with time as well. But as long as it works ok for you - its good.

I guess all these organs are connected or are impacting each other - so with so many complications - it is probably not so surprising.

But I guess we all hope you have better days ahead. I think you have a fighting spirit to admire - and it is impressuve that you have the capacity to share good advices with others in this forum with all you are fighting yourselves.
 
Just finished at the urologist. Again there are both red and white blood cells in my IA. A scan revealed I am not retaining urine so THIS IS NOT BECAUSE OF BOTOX. One of my medications called Belbuca (a fake kind of opiate) was recently increased and it may be causing bladder irritation so I’m going back down to the lower side I was previously on. I’m also going to take Miralax to get cleaned out to make sure I’m not experiencing bowel pressure on my bladder. Because I was on such a strong antibiotic (huge dose of Doxycycline) to prepare for my knee replacement that never happened, I may have a yeast infection in my bladder, though yeast didn’t show up in my UA. I’m going to start taking a high dose of oral Diflucan today just in case.

If I still have pain on Monday, I’ll get an ultrasound and a CT. Red blood cells in multiple UAs can be a sign of kidney malfunction or cancer - hope that’s not it.
 
@snow crossing fingers that it is not cancer or any permanent kidney issues. It is good that you have some answers and potential Solutions.
 
Snow and Allan it is very difficult to give any advice for sure cause fecal and urinary incontinence in which I experience both are such humiliating conditions that some people no matter what you do don't get full control. I also have had my share of humiliation cause it's more acceptable for this to happen to infants, toddlers but having to run to the restroom as an adult when out in a public setting and knowing it might be somewhat obvious what's going on due to a hint of the smell,leads to extreme embarrassment. Doctors don't always have all the answers and sometimes what is recommended is like putting a bandaid over a massive wound. Saying all of this to say be careful with Loperamide (imodium) there are studies showing possible cardiac issues from overuse. Yes it works, I used to say regarding diarrhea and use of imodium if the imodium don't stop the diarrhea you need to be hospitalized, cause yes it works. But beware and consider there is such a thing as Loperamide toxicity some symptoms that may indicate overuse/toxicity as dizziness, fainting, irregular heartbeat, GI complications as nausea, vomiting,electrolyte imbalances, constipation and paralyzed intestine. Just saying be careful. Let your physician know how much you are having to use to get a positive effect to see if they can recommend something else or something to take with the imodium to cut back on dosing. Just putting it out there. Hoping they determine the source of the side pain Snow but be careful. keep us informed. Praying you get some relief and some answers.
 
@Newdaynow Thank you your tips; I’ll keep them in mind and see what today brings. Not much bad pain yet today. Drank my Miralax and Starbucks so I’m sure an effective clean out is right around the corner.
 
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