Hi guys,

Im new here and really need your help.

Four years of UC led to total collectomy and j-pouch surgery. I have had severe fatigue for more than 3 years now.

I had my closure done nearly one year ago and had pouchitis come within 5months and now dizziness. One of the main reasons i did the op was to put an end to the fatigue as docs felt UC was the cause as there was nothing else wrong with me.

My fatigue and dizziness is awful.

Does pouchitis cause dizziness? I started having dizziness 2 months into cipro and flagyl.

I still have dizziness even when i am not on these antibiotics.

Im taking vsl at the moment and it is ok, although i still have some pouchitis.

All my bloods are good and have done many test for my fatigue and dizziness.

Can you guys help??

Regards
Jerry

When you say your "bloods are good" I'm assuming that means your red blood cell count has been tested and that you're not anaemic. If not though make sure that is checked. If it's not that, you may be dehydrated - particularly if the pouchitis is causing a very high frequency (although if the cipro/flagyl is working then it's strange that this came up when you were 2 months into taking it) - even if you're drinking plenty of water you can still be dehydrated if your electrolytes are low.

A few people have also suffered B12 deficiencies and this is also worth checking if it hasn't been already.

I note you say the dizziness/fatigue came within 2 months of using cipro/flagyl so I wonder if there's some connection there. The fact it has persisted when you haven't been taking them probably indicates otherwise though - how long exactly have you managed to stay off them for?

There are so many causes of fatigue and dizziness that it is virtually impossible to cover them all at this time. However, the fact that you continue to have chronic illness/inflammation is probably related. But, sometimes an assumption like this is really a red herring...just coincidence. But, Cipro and Flagyl can definitely cause the dizziness you describe. It should have resolved when you stopped the antibiotics, however.

What is intriguing is that your symptoms persist despite removal of your colon and regardless of your pouchitis treatment. So, I think it deserves more investigation. Often doctors stop looking once they have ruled out the more common causes of your symptoms and are satisfied that you do not have anything serious or life threatening. Maybe pouchitis and the antibiotics were triggers for an underlying disorder.

Chronic fatigue tends to be put in a "catch-all" basket of syndromes that doctors don't quite know what to do with. Something you may want to look into is dysautonomia. See if it fits your symptoms:
http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

Jan

I can sympathise. I continue to battle fatigue 14 months after takedown, but no regular dizziness. I do not take Cipro or flagyl. I can tell you that my potassium got low (in my blood) and taking a K supplment does make me feel better. Watch your diet and esp your hydration....if you are thirsty you need fluids, which could contribute to dizziness.

Hang in there.

I had battled constant fatigue for 4 years. Having tried everything I could find, with nothing ever seeming to help, I was mentally and physically exhausted until I read a post from Kathy Smith.

She had mentioned a hydration product called GOOKINAID. Never heard of it!

As a last resort I thought I would try it. Heck, I had tried everything else!

Since receiving it, I have drank about 3 liters per day and the results are simply amazing!

I owe Kathy Smith a very special THANK YOU, and all I can say is try it. You will not be sorry...Randy

Gookinaid's Hydrlite is now called Vitalye and sold on-line at: http://vitalyte.com

I am new to the site and it sounds like we are battling similar evils. I have had a JP since Aug 2006 and have had virtually no problems until this past Christmas. The docs claim that i had the flu but after weeks of being unable to get the BM to slow down (15-20 per day), they put me on codeine. Now it is April and i am still on the codeine (4) daily. Each time I try to drop any at all, I am back to square one. Along with this has come severe chronic fatigue and terrible dizziness.
I have had a Sygmoid that didn't show any sign of pouchitis, but the urgency, abdominal pain and constantly running to the washroom persists.
The codeine is making me nauseous and drug headed. I live in a small community with my specialist 3 hours away and a doc that doesn't seem very knowledgable about any of this.
I am getting very frustrated and feel that the bag may be a better bet for me.....
HELP!!!

Thanks for the thanks Randy. Yep, it's amazing stuff. The first time I ever tried it was when I was coloned in the early 80's. We went backpacking in the Tetons. I just started moving slower and slower. I opened up one of those Vitalyte packages, dumped it in my water, drank it, and I swear to you it was like someone had wound me right back up. I was cranking up that hill. I was a believer.

Since I hadn't been backpacking in a while I hadn't used it for years and then Suebear reminded me of how wonderful it was when she posted here about her trip down into the Grand Canyon. It's the only electrolyte replacement product they sell there.

My 86 year old mother who STILL works fulltime - in retail for god/dess's sake - drinks it all the time, especially in the winter when all those sick people are out spreading their germs around. She doesn't get sick. She also used to get leg cramps at night until she started drinking a glass of Vitalyte before bed.

I would suggest giving it a try along with the other suggestions here. Dehydration can also cause all the symptoms you've mentioned.

kathy

Jezz, Just a question, how long ago did you have your surgery? Your profile and initial post do not say. I know it took me a full year to recoup my stamina after surgery, and I am certain that dehydration played a role.

Jan

Jan thanks for your reply.

I have had cronic fatigue since it all started 5.5yrs ago.

The colon was removed in Dec 06, and pouch activated in Jun07.

Im so exhausted Jan and dont know what to do. I dont have any defficiencies as we have rectified them with supplements.

Have you heard much about vitalyte??

Did you have very bad fatigue?? Will it go?

Pleased to hear.

Jerry

Randy and Kathy,

Thanks so much for this. I will give it a go if i can get it in Australia.

Can you guys tell me more about yourselves?

How long have you have you had cronic fatigue for?? Its really making my life impossible. I am very tired.

At the moment on vsl#3 and have 6 stools per day althoug they can be very water.

Pleased to hear guys. Greatly appreciated.

Thanks
Jerry

Mike,

Thanks for your reply. My red cell count is fantastic. Also we have tried B12 shots, and B Group shots no difference, and bloods show they are also fine anyway.

I have done heaps of test on defficiencies and i was difficient in vitD, Faty Acids, and iron. These have all been corrected now with supplements so i have elliminated difficiencies.

I have been off cipro for nearly 2 weeks and still dizzy/light headed and exhasted.

Nit sure if i am dehydrated. I do drink alot of fluids, and potassium/magnesium/sodium levels are ok.

Any other ideas mate?? Pleased to hear.

Thanks to everyone. I really dont know what to do with myself from here...

Kind regards
Jerry

I suspect the main j-pouch related causal factors have been covered off so it may be completely unrelated.

As Jan says, it could be something unrelated.

One other thing occurs to me though which is that if you're suffering from anxiety this can lead to constant tiredness and dizziness as well (I know from past experience). If you've basically felt like this ever since you've had your surgery (which is a pretty traumatic experience for anyone) then it may be you've got into a cycle of feeling like this - i.e. you feel tired/dizzy post surgery which causes anxiety which perpetuates the symptoms.

Only an idea but I thought I'd mention it in case it's of any help. Really, though, you need to get your doctors to point to some kind of a cause for this - just ruling certain things out isn't really enough if you're still feeling terrible.

Jerry, did you look at that link in my other post about disautotomia? This is a disorder of the autonomic nervous system that can cause every one of your symptoms. When you rule out all the other causes, you need to consider these sorts of diagnoses. Sometimes it is not something we are deficient in, but something wrong on a global scale.

Jan

I debated for a few days on whether or not I should reply to this post. I don't want to scare anyone, or cause anyone undue stress, but in the end I figured I'd share my story and you can do with it what you will.

I had chronic pouchitis for 3 1/2 years. ON Cipro non-stop, except for the times I was trying holistic remedies (and I tried a lot of them). I finally made the decision to get rid of my pouch, but my surgeon convinced me to just disconnect it and get an end ostomy. I did that and developed a whole new series of symptoms - severe dizziness, lightheadedness, continued fatigue. I was off of meds several times and noticed no difference.

I had a complete neurological workup and was working with a neurologist to figure out if there was anything going on. Tried vertigo meds, along with some other neurological meds I can't remember at the moment. Everyone told me these symptoms were not related to my GI situation - the neurologist said it, the GI drs said it, the surgeons said it.

I finally decided to have my pouch removed 18 months later. Every single one of those symptomes went away within 2 weeks of my surgery and I haven't had them since. Once in a great while I have a dizzy spell, but I have allergies and mostly attribute it to that. I don't know why the symptoms went away...were they related to having the pouch still in, which clearly was a problem for me? Who knows...

All I can say is if they weren't at all related, why did they go away? Certainly they could have been stress related, but I don't believe that was the whole story. In my case, my body just didn't like having the j-pouch in and lots of things got better once it came out.

I am not saying you should have your pouch out. I am just saying that even if people tell you it isn't related, it could be. I don't envy you the situation you are in and wish you luck in finding an answer that works for you.