Hi All --
My bladder is very quirky and I'm getting frequent UTIs. My urologist suggested that the next step for me will be to perform intermittent self-cath (catheterization). Does anyone already perform this? Please fill me in on the ups and downs, useful hints, and your satisfaction overall with self-cath.
I'm experiencing the 2nd UTI in 3 months after years of not having any. My next new doctor will likely be the urologist to determine if I'm developing a neurogenic bladder. So I don't have personal experience with self-cath but I think that one of members here does. Try contacting Awordlover for information. She also has some great tips on how to maximize bladder emptying. Good luck.
Thanks Lisa. I just sent awordlover an email....
Hope all of your days are great days!
Hello Heidi: I got your email and am writing back on site so others can possibly benefit. Thank you for writing to me and thanks to Lisa for suggesting it.
I'm sorry you are having such nuisance bladder problems. Recurrent UTI's are very annoying. Assuming your doctor has ruled out other causes for your UTI's (ex: cystitis, kidney diseases, etc.), then I may have some useful suggestions for you.
1. I used ergonomic tricks for over 10 years to stave off self-cathing because I worried about getting more infections from self-cathing. It may sound silly and look absolutely absurd, but who cares, it works. I wrote about this on my blog and got positive comments from other MSers.
Relieve yourself in sitting position, as usual. Bend forward to a 45 degree angle and hold position for 60-90 secs. Let any urine release. Now lean to your right side lifting left buttock off the toilet seat. Hold for 60 seconds and release any urine. Now lean to your left side, lifting up right buttock. Hold for 60 seconds and release any urine. Believe me, this works! Body positioning is key for this to work. You will be good for at least two hours because you are empty. Try to limit your intake of tea, coffee, juices, alcholic drinks, or energy drinks since they stimulate your bladder moreso. Stick to water, no more than 3 sixteen ounces spread out over your day.
2. Regarding your every 7 week UTI's and knowing you have PPMS, I would suggest that after you try the example I outlined above, to then examine your hygenic habits and eating habits. So many items are scented these days, sometimes we don't even notice it. Keep track of the hygenic paper products you use - are they perfumed or stored in an area where you store cleaning products where the scent can carryover? Do you use scented feminine products (douches, pads, paper products)? Are you a powder user? Do you wear nylon cothing next to your body without the benefit of a cotton barrier (underwear or inserts)?
3. Regarding foods - which is often the biggest culprit after scented products - I found that cinnamon was my personal culprit and it seemed that when I treated myself to homemade chocolate chip cookies, cheesecake (cinnamon in the crust), or anything that had cinnamon as an ingredient, within 3 days I had a UTI. It took more than three months for me to figure this out because of the many ingredients in foods. So read your labels, keep a food diary (write down everything!) and see if your trigger is food related. A food diary may be the only way to narrow this down.
4. Neurogenic bladders often do not totally empty and that is the reason why most MSers must self-cath. Self-cathing the first time will be hit or miss until you get to know where YOUR urethea is located in your anatomy. The position you assume to self-cath can be awkward and (if in the company of others) sometimes embarrassing. But sometimes you need another set of hands to help you, so don't hesitate to ask a special someone.
***Self-catherization is the last resort....you don't want to go there if you don't have to. But if you do, positioning in order to self-cath is the hardest part. Experiment with what works best for you.
It will certainly require some getting used to also. Some women can put a bended leg up on the toilet, use a hand held mirror in one hand and the lubricated catheter in the other and insert. Other women can squat down to within 10-12 inches of the floor, place a hand held mirror on the floor and insert. Some women can sit on the toilet and bend back far enough and insert. Still others can lie down in bed, bring knees up to chest and using a hand held mirror (or not) then insert. Once you get to know where your urethea is located, you can actually stand, spread your legs and insert, but that takes a while of practicing to get the hang of it.
5. Self-cathing has its pros and cons. The cons of course are possibly re-infecting yourself by using less than clean conditions and re-using catheters. Self-catheters should be used once, and then thrown away. The pros are endless but include hours of comfort, extra sleep during the night, and reducing embarrassing moments.
6. Catheters in general. At some point with MS, many of us must resign ourselves to the fact that we need a catheter in place all the time. Catheters can be intra-urethral or super-public (inserted through a tube in the belly). Some people realize that a catheter in place during a long car ride, plane ride, etc. assisted by a leg or belly bag can be most comfortable and reduce stops thereby making the driver happy! A Johnny or Jane bottle is also handy. As for sleeping, catheters assisted by a bed (drop) bag, most certainly will eliminate bathroom runs and allow for a full night's sleep. I use a bed bag every time I get a UTI so that I do not run to the bathroom constantly, only to eek out a few drops.
7. For my own personal experience, by watching my diet with a food diary and knowing my food triggers, I have had only one UTI this year so far - and it was non-food related. It was because of swimming in a public pool on a cruise in April. It was the first time I had been in chlorine in five years and I just knew it was going to cause a UTI. Sure enough....Within 24 hours, I had a UTI.
A reminder to ANYONE who takes bladder medication to deter urine output (not people who take medication to promote urine output - ex: Lasix): When you get a UTI, the last thing you want to do is restrict urine output. I myself stop my Detrol until antibiotics are done. I want the infection OUT as soon as possible and do not want the urine to stay in. Consult your doctor first before you make changes in your medication schedule.
I hope you find some useful information here and that you will write back to let us know how you are doing,
Dearest awordlover --
Oh My Gosh is all I can say. I don't have time to give you my full response to your total answer to my questions right now, and I will when I have more time later this weekend, but the O-M-G is in reference to your voiding technique working soooo beautifully!
I only kept each buttock raised for 30 seconds (thinking I can always increase it to 60 seconds if/when I need to), and I slept F-I-V-E whole hours without getting up to pee - and without wetting the bed! That was H-U-G-E!!! I'm usually up every 1.5 - 2 hours to pee a tablespoon's worth...
So thank you for that, and I'll answer everything else later.
You are amazing to have answered me so fully and succinctly, and I'll think of you now each and every night as I get a wonderful night's rest.
OMG Heidi I am so glad that the ergonomic exercise worked for you!!! And 5 hours without getting up is great!
If only others would take me seriously when I tell them about this technique....most people poo poo it. Maybe in this forum and with your wonderful experience, others will try it and see that it works!
Thank you for your response telling your experience and I am looking forward to hearing from you again, Anne
Dear awordlover/Anne/ and everyone --
It's been three nights that I've used your voiding technique, and each night I have slept beautifully. 5 hours, 4 hours, and 4 hours without getting up to pee or wetting the bed. And... miracle of miracles... my dh says that I haven't snored for 3 nights! So for the past three mornings, when I wake up, he's still in our bed (meaning he hasn't ditched our bed for the guest bedroom)!
Here are my responses to your questions about my bladder... things I have had to change over the past 4 years since being Dx....
- I do not drink anything after 6:00 pm
- I do not drink: coffee , black tea, green tea, (or even herbal tea) as they ALL make me pee uncontrollably during the day and all night long
- I don't use *any* scented paper products, nor do I store my pads next to anything in the closet that is scented
- I wear only panties with a cotton crotch with my Poise pads as inserts
- I do occasionally use talcum powder, so I will stop using it and see how long I go next time without getting an UTI
- Cinnamon on food being a target for you, how interesting. I used to take cinnamon supplements (to help equalize blood sugar) and upon paying really close attention, found that almost all of my supplements made my bladder go crazy. So I then had to stop: cinnamon, B, C, and my multi-vitamins. That has helped quite a bit. Luckily Vit. D doesn't effect anything negatively.
- For finding the urethra during self-cath, my NP (nurse practitioner) in my MS doc's office suggested I put a Tampax into my vagina to help guide me to locating my urethra. (My belly is now too big and I haven't seen my "cookie" in years.) If I "hit" the Tampax I've gone too far!
- I had a bladder dynamics test done in my urologist's office, and I "failed" miserably! My neurogenic bladder spasmed and released liquid "around" the outside of the catheter as soon as my bladder reached only 62 cc of filling. Fluid was *everywhere* - down my legs, pooling under my butt, running down the legs of the table, pooling at the tech's feet - yikes! We tried it 3 times while I concentrated on "holding it," but my bladder spasmed very early on each time.
- I quit taking Detrol a few months ago as it wasn't helping much in the number of times I got up to pee at night. I've already tried DDAVP (made my feet swell), Oxybutynin (caused my mouth to be super dry), Sanctura (started retaining urine).
- I stop taking my probiotics until my antibiotics are done.
- I wipe myself by wiping the front by itself, and then discard the TP. I wipe the back by itself and discard that TP.
- I used to flush while I was still sitting, but I saw a video of the amount of spray and contaminates that swirl up during flushing - so now I don't do that anymore! Now I stand up and take a step away from the toilet before I flush... religiously. But I still got my most recent UTI.
- I've had my kidneys ultrasounded to make certain they're healthy, and they are. My NP in my urologist's office wants me to have an U/S performed every 18 months from hereon so I will. Thank goodnes for health insurance!!!
- I am on Copaxone even tho I probably have PPMS... and even tho the research says it doesn't really help PPMS. I haven't had any new active lesions since being on it, so my doc thinks that suggests it's working for me even tho I probably have PPMS. (I was her "one person experiment" and it seems to be working).
My urologist told me that 85-90% of people with MS will need to be under the care of an urologist eventually... whereupon I said, "So it seems like this is the beginning of our long-term relationship, eh?"
So that's me in a nutshell. I hope others benefit from reading about the things I've changed to keep my bladder as healthy as possible. We all have to be as flexible as possible with this disease - one of it's tortures is that it keeps changing... and so must we!
I found that Detrol LA was too strong and gave me cotton mouth, even on the lowest dosage. So I went down a level - to regular Detrol. Some docs start out with their biggest gun when I didn't need to be on such a high potency drug. You said you didn't see much difference during your use of Detrol. I am assuming you mean regular Detrol.
Detrol is one of those drugs that has to build up in your system (i.e. must be taken religiously) for its effects to be noticeable. I take 2mg Detrol three times a day which is the minimum therapeutic dosage.
If you did not notice any benefits from using it, perhaps talking to your NP about changing the way you take it will be better for you (i.e. mg vs. how many times a day vs time of the day). I really believe that taking the Detrol and using the ergonomics will make you much more comfortable. I found that I am more comfortable using both.
Regarding your sleeping, I'm so glad this has worked out for you, that you are getting more/better sleep and that your hubby actually doesn't seek other sleeping arrangements! LOL
Give 2mg Detrol some thought in addition to the ergonomics. Just remember to discontinue it if/when you have UTI's.
Take care, Anne
Hi Anne -- I was on 2 mg Detrol LA for months and months, and tried taking it morning, or afternoon, or evening. The few times I took it twice a day, I didn't get up to pee much at all at night - but then I was retaining urine, could hardly pee at all, and got a UTI. So I was never able to take more than 2 mg. Then my teeth started chattering uncontrollably, and I wasn't even cold. It'd start in the middle of a conversation with someone; all times of day and night; seemed to not be related to any food I ate. My MS doc said it wasn't in her "territory" and to call my internist. He said immediately that it was either the Detrol or the Wellbutrin, and to try going off of one to see what happened. I discontinued the Detrol first, and the chills and chattering continued. But since I was off of it, I just stayed off of it. Bathroom visits, leaking, etc. never changed either. Then I went of off the Wellbutrin - *very* gradually titrating down over several weeks, and lo and behold - the chattering finally totally stopped after being totally off of it for about 5-6 weeks. So since the Detrol wasn't doing much to begin with, I just stayed off of it. I don't believe in staying on a med if it isn't helping anything. And I did P/T for pelvic floor muscle strengthening and discovered doing kegels never helped my neurogenic bladder - I could do them 'til the cows came home and it won't prevent the bladder spasms. I definitely have a short-circuit somewhere between my brain and my sphincter muscle (or detrusor muscle, I forget which).
Take care, Heidi
Regarding kegel exercises - never did a thing for me either! I still have bladder spasms but only during UTI's. I discovered that ergonomic "leans" worked when I was pregnant and had gained about 100 pounds. After baby delivery, I just kept doing it because it worked.
Regarding taking Detrol vs. not taking Detrol - I agree with you. If it doesn't work, don't spend the bucks on it. I take it off label, so it is not only for my overactive bladder. Many drugs are given for other than their intended use, as you probably know. So what works for one of us may not work for another. Forgive me if it sounded like I was pushing it at you. I'm just thrilled the "leans" worked for ya and that you are getting good sleep!
Like you, my urologist advised intermittent self-catheterization because of frequent UTI's caused by retention. I have been doing it for ten months and it is a blessing! I am able to drink plenty, plan my daily activity accordingly and by cathing just before I go out, I can be assured of at least two hours before needing to look for a bathroom!
You will learn it quickly; it was less than a month before I was doing it without having to look but simply by feel. I sleep much better because I only get up one in the night, instead of three times, as before.
I feel very fortunate to have this option, rather than having to take drugs with their side-effects.
I wish you well.
Have been using self caths for about 2 years. Not to bad but not to good. have to make sure of liquid intake before going anywhere for at least 2 hours. they are not difficult to use but very annoying and it does create a lot of trash.
Medi=care and private ins covers all costs. Ask your dentist for a plastic zip lock container, the ones they use for toothbrushes. works very well and holds about 6 including antibiotics nicely in your purse
As a nurse, I've seen dozens of patients who have had to begin self-cathing. The learning curve can be a little tricky for some, although others seem to get it right away.
Modern catheters continue to get better and better, adding features like a self-lubricating tube and using more and more comfortable materials.
Even though others have given excellent tips and advice, I think this article really complements what is being said in this thread: