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Hello everyone
I have a jpouch since september 2008 .
Recently it was working pretty well .Usually during menstrual cycles
I get a temporary increased Bm n lose motions but then I always
Go back the usual number if Bm n consistency.
This time I got my periods with the usual symptoms and then after periods went away
I suddenly have lose watery BM
I am confused because its not like the symptoms of pouchitis
I had some left over flagyl and I took 400mg twice for one day
And I got the pins and needle sensation so I was scared of peripheral
Neuropathy and stopped it . It didnt help ofcourse coz it was just for one day.
Is it pouchits or just a stomach bug ?
We went for an all inclusive vacation to cancun . We came back on 10th july
And I am having symptoms almost 13-14days after . Donno if its pouchitis
Or a stomach bug tht I caught in cancun or orlando
Any thoughts ,insights ?

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When in doubt go the safe route...clear fluids if nothing else stays down then the brat diet until things calm down with either pepto bismol and/or lomotil or other bowel slowers to keep you out of the can as long as possible...my doctors rule is if it lasts more than 4 days then you need to consult him...food poisoning is nearly immediate (12-24hrs) but parasites like to sit and get comfy before making themselves known so who knows, could be a friend in there letting you knew that he has arrived?
Stay hydrated but do not allow this thing to go on too long before giving your doc a call...I had one that I picked up on vacation in San Francisco back in 03, it lasted for over 30 days...and my doc was furious with me for not calling in and getting something...I lost 20lbs and was weak as a kitten...she was not pleased that I 'took things into my own hands' ...
If you see blood or have a fever call asap.
Sharon
skn69
Yes you are absolutely right .. I guess I have to go and see My doc
There lot of bugs going around here in Us norovirus ..and a parasite
Cyclospora or something .I read it in news . But norovirus is mostly on west coast
N cyclospora is in midwest n now some cases in georgia
Donno if its tht . Its better to be safe than sorry .
Its so frustrating cause everything was going so well , no signs
N symptoms and suddenly one I get watery lose Bm .. I was like wht ?
I am trying to stay hydrated but doesnt seem like I am absorbing water much
Since urine output had gone down n its not clear anymore .. Its a lil dark yellow colored
I am taking immodium 8/day eating bananas n rice n pasta without sauces just with olive oil n lil garlc n salt . But I am feeling really tired .. If I am not able to sustain
I will have to go to the Er . Also one doesnt get doc appointment quickly here Frowner and u r been told if u dont feel good go to the Er
I donno how long will it actually take before I get some antibiotic or treatment for this
Phewww I am so frustrated right now everything was going good and we are trying to conceive
N this thing just came up out of nowhere Frowner its a setback coz I dont want to be pregnant unless my pouch is behaving a lil better . Anyways fingers crossed that I will be back to normal very soon .
Thanks for listening
M
Hey Sharon
Thanks a lot for asking ..feels really good
I am doing better than before . Stool are lose but not like water flowing from a tap
I have scheduled an appoinment with my gastroenterologist for wednesday
So waiting for what he has to say .. I am going to request him to give me a course of antibiotics . Only the problem is I had a little intolerance for cipro
N when I took flagyl I had pins n needles sensation so I am scared to take that
I dont know which other antibiotics are used to treat stomach bug or pouchitis
I am eating the BRAT diet and drinking salt sugar and water intermitently
Thats keeping me hydrated
But I am not back to myself .. Still have lose stool , gas n all the rumbling in the jpouch
Still fatigued but better than before . I just hope my doc gives me antiiotics right away
Coz most of the time he would do a stool test n then prescribe meds and its time consuming
N till I get the med i would have lost quiet a lot of energy.. And sometimes he would do a pouchoscopy before giving meds so thats really a long process Frowner
Buy I am hoping for the best and praying that I am back to being myself
And we resume conceiving our baby
Thanks again sharon Smiler
M
You could get a different doctor. My GI will prescribe with an email or phone call based on symptoms (actually I keep Flagyl on hand for when I feel I am having pouchitis symptoms). Plus, I don't get sedation for my scopes. That is my preference.

But, this is after years with the pouch and we pretty much have things figured out. You should not need to be scoped each and every time. But, if you are needing antibiotic frequently, then that is another story.

Since this has lasted longer than the typical viral gastroenteritis, I think it is safe to try a course of antibiotics.

Jan Smiler
Jan Dollar
Hello Jan
Yes that is a good idea to have antibiotics . My GI doesnt give medicines unless he see me.
But I did have flagyl leftover so I took 400mg twice and had pins a needle sensation so I stoped . When I asked my GI he said it might be a higher dosage for me and Whenever I take I should take 200-250mg so that I would have less side effects .

Last two days the symptoms have improved ..I didnt have increased frequency before but watery BMs . Now they are apple sauce consistency. I followed the Brat diet and it helped a lot . Also I was taking align probiotics which I think might have helped .I saw my GI doc today and he doesnt think I have a stomach bug . He thinks it might be pouchitis or pouch related . He Has asked me to do stool cluture test just in case
And given me vsl#3 . Also, He has asked me to wait since there was a little improvment
and take vsl#3 and he thinks I should give my pouch a little more time and not take antibiotics rightaway . I am hoping for the best .
Thx for all the support . It helps a lot to talk to people who understand exactly what one is going thru .
M
Hey Guys
I am here to give an update
No luck with vsl#3 for pouchitis .. I am still having diarrhea and feeling weak . Dr. Has prescribed me flagyl . In the mean time , I am on the dehydrated side n took a tub bath to calm myself down and now I have a Uti . Physician prescribed me macrodantin since We are trying to get pregnant . I cannot take cipro because I had a lil intolerance last time n i am scared to take it .. But I do want to try some day because that is one less antibiotic that can help treat pouchitis and other infections .
We still havent got the stool reports back . Did the test just 2 days before since didnt have energy to do it before . But seems like its pouchitis
I just need a little hope. For last 10years I have battled so many issues and till today no relief . Thats the reason we didnt have a baby yet because I was scared how I will go through the pregnancy with so many issues . I was hoping that one day I would feel better n that would be a good time . I was feeling excellent with my pouch for last one year but J had a hydrosalpinx and had to go through surgery to remove it . Now I am back to trying but pouch is not supportive . But I am so disappointed and looking for something good to happen in my life .
I just hope flagyl treats it successfully andI feel a lil better
Thanks guys for listening because people really dont know what to say when I talk abt my health issues n they just say that dont worry you will be fine or feel better
And I am super irritated by such statements . I dont blame them because they dont kniw a lot abt health issues .
But when a talk my heart out here I know that people understand how I feel exactly
Thanks again
M
For me, flagyl works to improve my symptoms within 12 hours of the first dose. But, that is not true for everyone. I am not surprised that the probiotics didn't work, since they are known to help sustain remission, but not treat active pouchitis.

Hope you get quick results.

You should be able to take baths without getting a UTI. Don't use bubble bath or other bath water additives, though. They can irritate the urethra, setting you up for an infection.

Jan Smiler
Jan Dollar
Hey Jan
I am hoping that flagyl would work . But I have to wait till my course for macrodantin is finished which is still 6 more days and only after that I can start flagyl since I was tood by my nurse to not take it together . I wish I was not so scared of cipro because then it would have taken care of both the things Uti and pouchitis
It doesnt seem like Macrodantin will give a little helping hand in killing bad bacteria in the Gut .
About the Tub Bath , I am not used to taking them because it gives me a migrane .but i love them . I had added heavy whipping cream to the bath water since My skin had become very very dry due to dehydration . So I thought adding it would help take care of it . But I guess it created a new issue . Also ,dehydration due to pouchitis could have aslo cuased an Uti I Am having less urine output than before .
I was wondering will flagyl take care of Uti ? So that I can stop macrodantin and start flagyl.
M
I think your nurse was off base. Check with your pharmacist or doctor. You risk letting your pouchitis get worse by continuing to wait to treat it. It is not that you cannot take those two together, but you need to be cautious.

Here is an interaction checker if you want to check for yourself:

http://www.drugs.com/drug-inte...zole,flagyl-375.html

However, they both have the side effect of peripheral nerve damage, so taking both at the same time could magnify the effect (like taking a larger dose of either one). Since you have this known issue, it is a reason for caution.

My suggestion would be to take something else for the UTI, like Septra. A bonus is that even if you take it by itself, it would likely help the pouchitis. The macrodantin, unlikely to help. If you are allergic to sulfa, then Septra would not be a good choice. Anyway, my point is that you should be able to treat both at the same time. Antibiotics are often combined, and macrodantin is not the only choice.

Jan Smiler
Jan Dollar
Yes checked the drug interaction link and it says moderate interaction .
About the neuropathy .. Taking too will definitely increase the symptoms since now with macrodantin I am having pins and needles as well Frowner . I really have to eat a lot atleast for first two dosages of the day only then I dont get pins n needles
I donno what is wrong this time .. Are my number of some vitamins or electrolytes off the normal range which is causing this . Because I never had such side effects either on flagyl or macrodantin . N I have taken macrodantin back in may for Uti n flagyl in january .

I think septra is a good idea .. Is it same as bactrim ?
Only problem is its weekend again Frowner so I have to wait till monday for septra.
Will flagyl take care of my Uti ? If so thenI can start taking just that .
Most frustrating part is All the issues always start on a Thursday or a friday
So by the time you go the the doc and start meds its weekend .
I just feel like ditching the macrodantin and start taking flagyl by itself for now
M
Has nothing to do with vitamins or your electrolytes. The more you are exposed to a drug (especially antibiotics), the more likely you are to develop sensitivities and side effects. While not exactly an allergic reaction, the way it occurs is the same. Allergic reactions never occur on the first exposure. It is only after you are exposed to it and antibodies form.

With drug sensitivities, it is repeated exposure that heightens your sensitivity, if it is going to occur. So, with the peripheral neuropathy issue, once you have it, you have it, and you need to be very cautious about taking a drug that causes it.

If it were me, I'd stop the macrodantin and just take the Flagyl, hoping it would take care of both issues. But, you'll have to be on the alert for the pins and needles with that too. Really push the fluids so that your urine is very dilute. You can try drinking a lot of cranberry juice (but the sugar may increase the diarrhea, so be careful with that) or cranberry supplement. Some people swear by it for UTIs, but the evidence is thin and conflicting. Can't hurt though (except for the sugar thing). Another recommendation I have, since you feel you are at a dead end with your doctor for the week, is to call the pharmacist for advice. I am pretty sure he would recommend stopping the macrodantin. That is what pharmacists are for. He might even be able to contact your doctor's after hours line and get a new script from an on-call doctor to replace it. More than one way to skin a cat!

Yes, Septra is the same as Bactrim. I was on it for a year when I had chronic UTIs when I was younger. Later on, my GI prescribed it for me to try to get me into remission when I was trying to avoid colectomy (obviously did not work). It is often prescribed for Crohn's too.

Jan Smiler
Jan Dollar
Yes I have come to a conclusion of stoping the macrodantin . I only took one pil in the whole day . From tommorrow I will start taking flagyl n see what happens .
I did call the pharmacist (publix) today . He checked for side effects and said that you may have neuropathy side effect and there could be many reasons like electrolyte imbalance or vitamin B deficiency or others and I was wondering could those be the reasons since I am having diarrhea for more than 15 days . But Jan as you said it doesnot depend on any such things so I will keep a watchful eye .
I want to drink lot of fluid but its increasing the no. Of Bm since I am having diarrhea and already absorbing less water . But will try to drink as much as I can .
Lets see how I do on flagyl .
Will keep you posted
M
Sure, those other things can cause neuropathy, but the symptom did not occur until you took the antibiotic, so that makes me suspicious. Your electrolytes would have to be seriously off for that symptom to occur. You'd probably be in the hospital...

Even if it increases your output, you need to drink "ahead" of your output.

Jan Smiler
Jan Dollar
Hey Guys
I am really scared because of neuropathy symtoms . I got pines and needles in flagyl , then on macrodantin . I decided to stop both the medications and called my pharmacist about it again . He didnt seem much serious about it but I asked him that I had cipro for one week so can I take that instead cause I am also having pouchitis symptoms . He said it was ok . So I took 250mg of cipro twice on saturday and yest (sunday).
Yesterday after taking the dose I had pins and needles at first and later I started feeling my hands and feet cold when it is not really cold hands and feet at night . I live in orlando . And today I woke up with tingling and numbness in my left feet , legs and left hand Frowner . Will this go away ? I am really scared now . I dont know what to do abouttreating Uti n pouchitis . Why Am I suddenly getting pins and needles with all the antibiotics ?
And will this tingling and numbness go away . I have called docs office and I am waiting for there call back . Also they had sent my urine for culture and they found no bacteria . What does this mean ? I am having blood in the urine and it hadnt stopped till yest . And it was coming out from the bladder. Today I started my periods so now no way to know .
When I did a urine test it should some pis cells and blood in the urine too .
Do I have a Uti then ? N can I not just take anything for it for now .
I just hope his sensitiviy to antibiotics goes away .. Else it would be very difficult to manage any infections and pouchitis .
Thanks guys
M
Antibiotics are vastly different substances, so a side effect like this would never apply to all antibiotics, though it could certainly occur with more than one, especially if they are similar chemically. You have enough things going on that IMO you need good medical attention and (as Jan says) to take a deep breath. We're here for you, but this needs more than a support forum.
Scott F
Thanks a lot ScottF . I am really scared . I called my Physician about this and he said it was weird that I am having same side effects for all three antibiotics so he thought I am having anxiety and continue taking cipro coz I was still having blood in urine and that hopefully those side effects will go away after I stop cipro. But I am too scared to continue on cipro because of the numbness . As they didnt find any bacteria in urine but blood I asked him then Can I stop antibiotics . So he agreed and has asked me to see a urologist for furthur treatment .
I just donno whats happening .. I am having all these problems out of the blue .
My physician didn't say anything when I asked him about the numbness .
I guess he seems to have no idea and maybe refer me to a neurologist .
Now Its all about wait .. Waiting to see a urologist .. Waiting to do test n get the result etc . And wait to see if the neurological symptoms improve or not .Frowner(
And how to treat infections if any that is another story altogether .
I am just losing hope about everything right now .
Anyways thankyou so much as always for the support .its much needed right now .
M
I hope you get this sorted out. Just to be clear, I didn't recommend that you to refuse to follow your doctor's advice, just that you stop the suspect medication (temporarily) and seek that advice. Your pins and needles could certainly be due to anxiety, which is more likely than caused by three different antibiotics. Leaving blood in the urine untreated isn't ideal. Once again: take a deep breath.

Are you dealing with a surgeon or an internist? There are very few surgeons with the patience to work through this with you.
Scott F
If you are seeing blood in your urine, you have either a bladder or kidney infection/inflammation. Absence of bacteria can be a red herring, so to speak. Presence of blood is NEVER normal, so this should be investigated.

I doubt that Cipro would cause your neuropathy symptoms. Macrodantin and Flagyl, yes. Could indeed be nerves. Are you hyperventilating by chance? Your posts definitely express fear and panic, so anxiety could absolutely be a factor.

But, you should not be so afraid and panicked that you do not treat real problems. Your body can tolerate mild peripheral neuropathy symptoms for a week or so without it being permanent. When I said that having the side effect meant you should be cautious, I did not mean for you to be unable to treat. Often, side effects are tolerated in order to get past the problem. Leaving infections go untreated can wind up being much worse than a minor side effect. Remember, risk vs. benefit.

I agree it is a good idea to consult with a urologist and figure this out.

Jan Smiler
Jan Dollar
Hey guys
I agree that I was scared but only after numbness set in . Till then actually I thought pins n needles are ok and will go away when I stop the medication .
N actually I was feeling pretty good on cipro coz my diarrhea felt better with cipro immediately after first dose . So I was actully feeling very happy . So first symptoms shldnt be due to anxiety .

Right now ,I am dealing with lots of stuff at the same time Frowner I thinks its like a perfect storm .
Firstly ,I stopped the cipro after numbness and still having numbness and muscle weakness. And cramping n pain now not only in left leg n hand but also right
It feels like my muscles are struggling to carry my weight while walking .
And I really didnt have any of these symptoms before taking antibiotics .
When I was taking cipro I also took tylenol once donno if tht interacted but I had asked pharmacist before n he said it was ok .so think that shouldnt not he the reason.

Secondly blood in urine . I had pain only once for an hour on the right side between waist and ribs . They were sharp pains and would come and go . After one hr they stopped .
So I dont know why they happend . I have a complex ovarian cyst on the same side (right) where I had pain which we are monitoring every cycle .also this pain occured during my second day of menstrual cycle . So it could be cyst Or I donno may be kidney issue like a stone or something else .

The problem is the numbness and weakness is still not going away . And also if I need to take antibiotics how will I take them if I am having such side effects .

I did blood work to check iron , b 12 and electrolytes and all the numbers are normal

Also I have a small abscess under armpit n when on cipro I had applied neosporin n tht gave me pins n needles as well for some time .
Its scaring me ofcourse n its difficult to think positive
But I will try my best to keep calm n relax n see if that helps my symptoms

I am seing a urologist on 20th And a neurologist tom
Lets c what they have to say .. Hoping for the best .
Thank you scottF and Jan for all the support .
M
Tricky stuff, to be sure. Sometimes these things are inter related, sometimes not. You can develop a neurological disorder independent of whatever else is going on. While it seems suspicious that the symptoms started after taking Cipro and continued with every other antibiotic you took, even topical(!?), but that does not rule out the tingling and numbness being a separate issue. I have severe spinal stenosis in my neck which caused tingling and numbness in my arm. I am taking numerous drugs. But, they are unrelated. I had EMG and nerve conduction testing and there was no permanent nerve damage, just pressure on my nerves from the narrowing in my spine. Now that I know what it is, I adjust my lifestyle so I don't aggravate it. I also get numbness and tingling in my legs, but again, it is spinal.

So, it is very possible that you have some other nerve irritation thing going on, so try not to assume what it is before you know what it is. Sit tight and see what the specialists say.

Good luck!

Jan Smiler
Jan Dollar

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