Skip to main content

For about 25 years I was pouchitis free but in the last 5 years it has reared it's angry head about a 6 or 7 times.  Standard treatment has been with cortemema for the inflammation and cipro/flagyl for the infection.  However, I am seeing more and more side effects from the flagyl over the 2 week dosage in the form of numbness and tingling in the finger tips and toes(not uncommon from what I am reading).  This worries me because nobody can really confirm whether this is a temporary side effect or am I looking at permanent damage.  My pharmacist who has taken the most time to talk to me, assures me there is no proven studies that it is long term but the more I read online, that may not be true.  It seems the more times I attack it with this treatment, the side effects start earlier in the treatment (4 days in as opposed to 10 days).  My Dr. gave me a prescription for azithromycin and told me I might want to try this instead.  Personally, I feel I go into these consults and I get very little help... just drugs thrown at you and they really don't care... but that's a whole other topic.  

I have to say though the meds help very well.  Within 2 days, I am back at work and being an airline pilot, you can imagine how difficult it is to work around a j pouch let alone when pouchitis flares up.  

Anyway, wondering if anyone else is experiencing this.  I have stopped the course of meds 6 days in to this treatment as my symptoms of pouchitis are gone.  I am also wondering if it's the flagyl that is causing this numbness, if I just try to fight this with just the cipro on it's own or try the azithromycin.  

Thanks everyone... good health to all!

Mark

Original Post

Replies sorted oldest to newest

For most people either Cipro or Flagyl alone are sufficient to handle pouchitis. I don't think it's sensible to take both together unless each one alone has failed (and I've had to take them together continuously for several years). Under no circumstances would I take Flagyl with the side effects you are describing. Have you tried Cipro alone? Six days just isn't a long enough course for most cases of pouchitis. 

I'm sorry to read your post and it sounds like a very difficult situation indeed. I've been in a similar predicament using these antibiotics to keep going during a very demanding time in my life. Unfortunately doctors didn't think much of my side effects (deep aching throbbing arms) and didn't recognise it as neuropathy even when I completely lost use of my arms and was complaining of aching intense muscle pain. How I wish I could go back in time and not take more of these especially after side effects emerged. Honestly I will be blunt here in the hope I can help you; they have significantly diminished my quality of life and everything I've worked for, I would have my pouch removed ten times over if I could undo having taken these. Years on and living with chronic pain and disability due to whatever these drugs did to my nerves, muscles. Cipro is not an innocent drug here it may be the culprit in your symptoms. It, and other flouroquinolone class antibiotics are also associated with permanent nerve damage. The FDA recently recently new warnings warning of long term to permanent disabling side effects including PN and damage to soft tissues. Doctors honestly seem to be pretty clueless about how severe the side effects of these antibiotics can be! Also note in the cipro leaflet it says (if experience xyz signs of neuropathy, stop taking immediately to prevent an 'irreversible condition'). You have no way of knowing which drug is the culprit as they are both associated with PN, and the side effects can come on days, weeks and even months after ceasing treatment. Can I ask if you are you suffering with any other side effects ? Please look into ' flouroquinolone toxicity', although fine for some people, these are drugs you don't want to mess with especially if you are having serious side effects. Sorry if my message hits hard, I wish you all the best and many people do get over the PN. Feel free to pm me I've done a tonne of research on all this stuff.

https://www.google.co.uk/amp/s...s/amp/?client=safari

Ps Marcus there is really interesting research emerging for turmeric and inflammation. There are also some things that may be helpful for you to take to help minimise side effects because cipro chelates Iron, zinc and magnesium out of cells as well as causing damage to cellular mitochondria and oxidative stress. In some studies less cellular damage occurred in the presence of antioxidants including vitamin E and NAC. So it may follow that these types of supplements could help although there is no research done that I'm aware of however. 

Yes as Scott mentions they are really brilliant and work so well but, if these side effects do emerge, its risky business to carry on taking. I really think if I hadn't compounded my side effects with further courses it would have been ok ...so hopefully Marcus your PN will subside in a few months if you can manage to avoid re-exposure. 

Hi All,

My Dr has just put me on a regiment of Cipro and Flagyl for 60 days after doing a scope and discovering I had extreme inflammation along with many ulcers. Funny thing is I didn't really have any symptoms, maybe an extra sit during the evening. But watching the big screen I was quite shocked at what a mess I was.

My Dr has hinted at putting me on Asacol to maintain rather than having to keep going back to the antibiotics. Has anyone ever heard of this?

Rob

Thanks everyone for your kind words and recommendations.  It seems these drugs effect us all differently.  They seemed to be the charm for me the first few times of pouchitis but obviously my body does not like them anymore.  Since my post I have done some more research attacking this naturally.  I have altered my diet ... eliminating wheat (gluten), sugar (a real culprit of bad bacteria), and for the most part, dairy.  And of course staying away from processed food.  

I have also been taking Goldenseal (an alternative to antibiotics),  Boswellia (for inflammation), and a good probiotic.  

https://draxe.com/goldenseal/

http://www.nutritional-supplem...swellia-serrata.html

 

I'm very encouraged with the results.  With the onset of my last episode of pouchitis, since attacking it in this manner, my symptoms are gone and I did not take any meds.  I plan on staying on the diet... from what I am reading, I think half of the battle is keeping the bad bacteria from gaining ground.  

Anyway, I hope it continues... prevention might be a big part of it.  But I sure miss that nice big slice of pizza with pepperoni but I'm learning how much good food you can make if you take the time search for recipes.  Not to mention, I have lost 5 lbs in 2 weeks just from eating right.  

All the best to everyone!

Mark

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×