I have a question for all my friends. I have another UTI, on antibiotic, again, after just having one 8/11. Do any of the rest of you have this same issue? I have been plagued with this for over 50 years! I am seeing a Urologist, but it just doesn't go AWAY! Along with it, of course, I am having a "pseudoexaserbation, with a recurrence of a flare up from a few months back, when I was treated with prednisone. The head is just not screwed on straight again!
I'm waiting for culture results on this one. With my GP, I did go back for retests, but the Urologist does not do that follow up. Next visit, will have to have a conversation about MS and UTI's. Another doctor in that practice, years ago, put me on a several months therapy of antibiotic, and it was cured for a long time. I'm ready to do that again, if she will.
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4fishylady
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Okay, so I fibbed. I do have a couple more things to add:
1) I personally think your urologist should be following you with your UTI issues and MS. At the least, a urologist should do a full work up to determine the cause of your UTIs
2) I've been on daily antibiotics (macrodantin, Bactrim) for years in the past. That did help for a while. Can't do that any longer due to liver issues.
Tutu Thanks for your response. My urologist did do a full work up last year, and found nothing unusual. I can't take Bactrim, because of allergic response issues, Cipro no longer works for me. At least she is trying different antibiotics. I take a Cephalexin after sex, but she is prescribing cephpodoxime pro currently for this run of antibiotic.
Hi4fishylady, I am going suggest what to do to reduce proliferation e re infection that really works and it's so simple as nature:
First: Cranberry is the number one very well proven in the medical field working in the bladder not letting the bacterias get proliferation inside the bladder wall. This is old and effective. I use frequently,in comcentrate pills or in 100%cranberry juice not concentrate taking together with blackberry juice for two reasons: taste better and increase immune system.
The second: always use baby wipes in your toilet, not only bathroom paper, makes huge difference.( Does not need to be baby wipes, could be any other toilet wipes).
Third: you need to start taking probiotic to rebuilt your good intestinal bacterial flora after have been taking too much antibiotic that kills the bad and the good bacterias. I take from the brand Digestive from Schiff, resist stomach and go thru the intestinal, besides others. "The intestine is our second brain", did you read this anywhere? Its true. We need to bring the good balance back to our intestine to fight the fungi we ingest everyday from food and better defense our sistem.
Four: there is another option in medication called Macrodantine to be taking to prevent infection, not to cure.
Miriade Thanks for your response. I do most of what you suggest, and will try Digestive by Schiff, when I finish up my stash here. I took Macrodantin long term therapy 2 times in the past. May be time to go there again. But, may have to change urologists to get it. This one doesn't seem to be there yet, but another one in the practice already suggested to me that he would do that.
erash Thanks for your response. I may have to go back on Macrodantin again, if the urologist will give it. I do all of the other things, but doesn't keep the UTI's away.
erash and Miriade talked about wipes. I order individually wrapped antiseptic towelettes (like those used prior to a clean-catch urine specimen). I get them online, a case of 1000 at a time. I believe I paid about $25 for the last case (includes shipping). I go through 3-4 cases a year. I carry them in my purse, pocket, and have them within reach of the toilets at home. Like toilet paper, swipe once and discard. Don't fold over and use again. Use a wipe after your toilet paper is clean after a bowel movement.
Also...I have to be careful straining-bowel movement, lifting things or even overdoing physical work. I know it sounds crazy, but that will set off an infection for me.
I feel your pain, 4fishylady . I hope the UTIs become less an issue for you. 💕
Tutu I have gotten so many helpful responses to my question. You guys are wonderful. I routinely do all the things you have suggested. Lois52 mentioned D-mannose powder, which I had never heard of. Looked it up, and found it is simply a type of sugar, which when you mix it with any kind of liquid, takes bacteria out of the body, via the urine. It acts sort of like fiber in the digestive system, taking cholesterol out. I cannot find it in my little Podunk town, but have ordered some from Amazon. Meanwhile, the GNC has a cranberry/D- mannose pill that I will get and use until the large bag of powder comes. PTL! From all that I read, this could be the answer to forever being on an antibiotic! Everyone, please read up on this D-mannose powder! I also found that the cranberry pill I have been taking, is very low dose! D-mannose is the critical ingredient of the cranberry that makes it so helpful, but in a much larger dose.
I had to stop the Macrodantin (was on a daily prevention) as it attacked my liver. Daily to prevent not cure: I take cranberry capsules 450mg and Cephalexin250mg1xdy - capsule. For years I had UTIs which activated my MS and caused me to suffer greatly. My urologist tested me and found that due to MS I was unable to completely empty my bladder - I was eventually put on a self-cath program (sad to say but it sure did solve my 'urgency' problem)
Hi 4fishylady. Sorry to hear of your UTI. I was plagued with them for years and years, long before MS hit me. Several years ago my GYN suggested I start taking "Cranberry Extract with Vitamin C" daily. NatureMade is the brand I use and is a reputable brand for OTC supplements. He told me it "must include Vitamin C." It has worked wonderfully. Good luck and hope you feel better soon.
Marcia2901 Thanks for your response. I have been married for 56 years, and have had UTI's since shortly after that time. 2x's on long term antibiotics, probably need to do that again. I take V-C 1000 mg daily, along with cranberry pills morning and night, and drink water with cranberry juice, take probiotics, eat healthy, and do all the Urologist tells me to do. It ain't workin! I will try to add more V-C, but don't think that will do it. Now, of course, the MS thing is working against me too.
I so much appreciate all your comments! It is so comforting to know we can share, without embarrassment on this forum. It reminds me of what the Bible says about the Lord being there to help us in our times of need. All we need to do is ask....... Have a blessed day!
4Fishylady, it's Fancy1959. Boy can I relate to frequent UTIs. I've had three since May of this year, one really bad one. What I have noticed due to my Ms is that the muscles involved in my bladder have been contracted and affected by the MS much like the muscles in my hands and feet with my toe drops excetera. I have a hard time emptying my bladder completely. It's like I have little Chambers in my bladder and I have to work at emptying each and every one. It is not a quick process and it is easy to not quite get them all empty due to my lack of sensation in that area.
The only thing that helped me was the procedure I had done by my urologist where they actually open up my urinary tract to and stretched it. Yes like it sounds it was not pleasant. Find yourself a good urologist that has dealt with MS patients. Some neurologist wants use Botox on your bladder. The urologist I use said the only thing that will do is allow your bladder to store more urine than before. It doesn't help at all with the emptying according to my urologist but talk to one that you trust and question him or her don't take my word.
The other extremely bothersome issue I have to deal with with my bladder besides being hard to empty is that I am incontinent sometimes. Certain thing set It off and I wish I could define what they were but I have not yet been able to. I know when I start a UTI I become very incontinent in that as one of the first sign that I watch for and get ready to go to a doctor to be tested when it happens. Now my incontinence is not leakage, I wish it were. When I become incontinent I actually have little-to-no warning and my bladder will completely void itself. Again I wonder if this lack of warning is due to my lack of sensation in that area.
I know this is a topic that many people are shy about talking about for obvious reasons. I hope this helps and I am a firm believer that information is our friend and if we have questions we need to share what we know so that we learn from one another and conquer this monster. Remember together we are stronger! Until we speak again please take care and let me know how you go on your quest to conquer this issue caused by MS.
Fancy1959 Oh my! You have brought up something my mother-in-law had. It was a spastic bladder! She could not go when she wanted to, but instead her bladder would completely empty whenever! Once at the GYN office, she tried to urinate immediately prior to getting onto the table, but could not. Then, as they helped her up to the table, it emptied, flooded the whole table down to the floor! She was immediately tested for spastic bladder, and was diagnosed for it. She wore 3 large pads, and more stuff, all the time, to prevent making messes. I had never heard of that until I saw it happen with her. She did not have MS! We do not know of a stroke or anything else that might have caused her to have this issue. (She also had total prolapse, of uterus and rectum, which was repaired surgically.) You may need to try a bladder control med, like Detrol or something to see if it helps. But by all means, discuss this with a Urologist! Also, read up on my new supplement - D-mannose powder. It may be a lifesaver for our UTI issues! I'm giving it a try, and will keep you all posted!
Self cath? Also, there is research about adjusting the pH of bladder by using estrogen (Estrace cream) or actually estradiol tablet inserted in vagina.
Becky63 I do use the Estrace cream as prescribed by both the Urologist and my GYN. Never heard about a tablet in the vagina! Oh my! What will they come up with next? Also, I have bought the D-Mannose powder, and am giving that the jolly try! Hoping desperately that it works! Stay tuned!
It's using the tablet instead of cream. Less messy😀. My gynecologist said probiotics are also needed directly in vagina also to help clear out the bacteria. Research has been done but hard to find what to actually use vaginally. Oral probiotics do not work as effectively for uti's This is all what he said. And I value is opinion. He's the only one that has really listened to me when I was explaining things going on with me. It all started out my leg hurt. He said usually that is back problems and set me up for back dr, MRI, etc. then I just happened to pick up a magazine while waiting for MRI results that had an article on MS. I went in with it and showed it to him after he told me results. Very strange but eye opening... sorry for the long post
I too am plagued with chronic uti's. I have been diagnosed with neurogenic bladder, which means my ms issues keep me from being able to empty my bladder. I try to stay hydrated and urinate regularly.
Debs5997 I never heard of neurogenic bladder, have to look that one up. I also have a problem in fully emptying my bladder, but as yet, the Urologist has not addressed that. I try to sit longer, leaning over, and sometimes pressing against the bladder to get all I can. I am taking 1000 mg. of the D-mannose powder 3-4 times daily now to see if that will help. I think it is made from corn sugar, but is the same ingredient that is in cranberries, but much more concentrated and almost calorie free! (Another issue that I am considering, in my frequency of UTI's is my Y-water exercise class. Some of the movements we make are to open and close the legs many times, under water, in different positions, which to me, exposes the vaginal area to GERMS that should not be there! Ugh! What's a body to do? I guess, maybe, I should just go there to simply swim. I could keep my private parts more closely together that way.)
4fishylady , I have the same as Debs5997 . I have both--neurogenic bladder and bowels. For decades I was mistreated (for an overactive bladder), and have had chronic UTIs since forever. My current urologist, at the request of my neuro, investigated further. After a cycstoscope discovered no physical problem (bladder or urethra prolapse), I had to do a 'diary'--wrote down liquid amounts (going in and going out) the time I drank or irinated, etc for a week or two (can't remember how long). Then they did the test (can't recall the name) where they put a catheter up you and fill your bladder to see how much it can hold and when you need to void. I've also had numerous ultrasounds after voiding to see how much residual urine I retain, and IVPs to make sure the bladder and kidneys are okay and functioning correctly
I do not take baths (I do shower though 😉), I won't step foot in a hot tub, and I void immediately following sex and make sure my husband and I are freshly showered prior to it.
A 4-month long UTI 2yrs ago caused my urologist to implant a bladder stimulator. Anything to delay self-catheterization because he fears that may cause me to have more UTIs. I still get UTIs, but only about 4-5 a year since the stimulator was implanted. It was double that prior to the surgery. But like you, I am VERY careful. I don't know how clean (or warm-a Petri dish for all kinds of bacteria) your pool water is, but I'd probably be thinking as you are.
I still think your urologist should be able to determine the cause of your problem. 💕
It would be great if she could determine the cause, but I have been to others in years past, and no one has come up with anything except, to take an antibiotic immediately after sex. That doesn't stop them either. One article on D-mannose said that the E-coli bacteria which is usually in the intestines, can also show up in the urine, and thus causes these infections. The D-mannose gives those bacteria something to latch onto and be carried out of the body. The information on D-mannose says to take a dose prior to sex and also a dose after it. (Years ago, one Urologist said to me "I don't know what you are doing to make yourself keep having this." I immediately asked my GP to refer me to another Urologist! The very next one, put me on the antibiotic after sex. He said it had been found that some women are just more prone to have infections after sex.)
You guys are way worse off than I am. I am so sorry for what you are having to deal with on a daily basis. Thanks for being so open and honest about your lives. I have been doing everything as suggested, except for the new item - D-mannose powder. We'll see if that helps any. Would love to not see that Urologist again until January of 2018!!!!! Wouldn't that be a breakthrough! If it works for me, it might help everyone else who is plagued with having to deal with this issue. Time will tell. Stay tuned!
Hi fishlady - I don't get on the site as often as I'd sometimes like and I just saw your post. I relate to this problem. For 2 years I was getting more and more UTIs, sometimes 4 or 5 a year. I had started having an issue with my bladder where is wasn't emptying completely. I was afraid I might have to start self-catheterizing. So I was trying every "home remedy" I could find. I tried different things that helped a little, but I finally hit on something that has worked for me, which is taking D-Mannose. I take 1500mg at bedtime every night. I've tried cranberry and other things, but the D-Mannose has worked for me. I haven't had a UTI since last February! I understand the way it works is it doesn't allow bacteria to stick to the bladder wall and the bacteria gets flushed out with the urine. I also make sure I drink 40 to 60oz of water a day. Besides my MS specialist, I also see a functional medicine doctor. She recommended a very small dose of lithium (5mg) which promotes nerve growth. A side effect is it also causes your kidneys to produce more dilute urine, so it is recommended drinking more water when you're taking it. I've noticed since I started taking it that my urine stream is a lot stronger and I go more. I had been on the D-Mannose for a few weeks before I started the low-dose lithium supplement and I think that is the main thing. But I think the lithium has helped me too. I hope you find the answers you need. Best wishes.
This is Fishylady checking back in, after a long absence. In a prior post, I had said that I had hoped not to see my Urologist again before January's appt. Well, that didn't happen! Had another UTI 10/17/17, the 3rd one in 3 months, so had to go back again for another run of antibiotic. I am now scheduled for a "retention study" in December. Maybe this will tell us something new and different? She did put me on a different "prophylactic" antibiotic for use after intercourse, which seems to be working, at least for the time being. Also trying to remember to take the D-mannose and lots of water, too. Happy Sunday to everyone!
I feel like I have a constant uti. I go on an antibiotic and it goes away. I go off and it comes back. I had the scope done where they look in the bladder (not very comfortable I might add) and it showed nothing of concern. I just think I don't completely empty every time and that's what causes them.
OK, checking back in again. So far, the bladder issue is holding for me, without a new UTI, but am doing the "intake/output" thing for a bladder retention study in 2 days. (Had UTI's 8/15, 9/17,10/14). Taking the Cefpodoxime after intercourse seems to be working, along with D-mannose powder a couple times each day. Found D-mannose powder on Amazon.
Just came off a run of prednisone for a flare, and am as weak as water. Is this the normal? I am new to all this stuff. How long does it take to get some energy back after completion? My head is not fully cooperating, with lots of fog issues. I'm hoping the snug feeling above will soon pass. Nurse said if little improvement after this, might have to do do infusions. Yuk! Doesn't even sound nice, let alone, be on the cortisone again!!!! Help? It's Christmas, and I feel I'm backing up!
4fishylady by chance do you use catheter?There is a gentleman I know that for years bedridden, lost company etc and infection had occurred because catheter used put in by nurse caused repeates of UTI.Dont know from what stage to other using the catheter happened.Certain bacteria
jackiesj I am unable to see all of your blog after Certain bacteria... But to answer your question, no, I do not have to use a catheter. My doctors always do a culture when I have a UTI to find out what bacteria they are treating, so I would recommend this to him. Also, for years, I had used Cipro as the antibiotic after sex and it was no longer effective for me. I was changed to Cefpodoxime and it is working wonderfully well. I also take 500 mg of cranberry extract, as well as some D-mannose (which is the ingredient that makes cranberry so useful), and try to drink lots of water. So far, I have not had a UTI since 10/17! Wonderful record for me!!!! Hope this helps.
Have a male friend who for 3 years utis, lost job etc bedridden and come to find out that the catheter they were using had been contaminated, not properly done when administered....So each time reinfection...just a thought here to check out.
Well, my current report is not quite as good as I had hoped. I have had a couple of uti's in the last couple of months, but I still take 2 cranberry supplement pills and try to drink lots of water. I'm not so good at that last one, so that's probably why it keeps plaguing me. But, still my record is better than it used to be, I'm pleased. I keep test strips on hand to keep track of what's happening.
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