Jan,

Thanks. I had fatigue set in at the very begining of UC. So i have had it all along. When it first hit me it hit me very hard, and fatigue set in since then and has never really stoped..

The dizziness is something that has set in the last 4 months, so say 6months after my closure.

So i dont think its disautotomia. I dont know.

Perhaps i am very mentally drained fr all this and anxiety is coming in to it. I think that all i think about is how to stop my pouchitis/fatigue/dizziness..

Not sure jan.. Docters say it will pass. Some say that the dizziness could be from a virus.

let me as you a question, did u have cronic fatigue whilst having UC, and did it go away after u did the operation???

Thanks Jan..

Hi Jil,

Very interesting indeed and thank you for sharing this. Im very dizzy all the time and lightheaded and still have cronic fatigue.

I have a few questions for you. When you were on cipro, was the dizziness any worse or better?

When the pouchitis was at its best, was your dizziness any better?

Has your fatigue gone?

Did you have cronic fatigue when u had UC?

Any regrets?????

My UC was fast and furious - dx in October 97 and j-pouch was done in April 98 after a 1 month hospital stay (and 32lb weight loss over 3 months). I was exhausted all the time, but also acutely ill, so that's probably not a good thing to look at in my case.

The Cipro really didn't affect the dizziness, but I do think it caused me to have some other central nervous system issues that definitely got worse on higher doses and better when I dropped down. The drs don't really let you know that this is a side effect but the manufacturer will say it can happen in only 4 weeks, so certainly can happen longer term.

My pouchitis was never in a good place, but I would say my dizziness got worse when the pouchitis was slightly better.

I was so dizzy that I had to be taken home from work by colleagues on multiple occassions, was afraid to drive alone, or even take a walk in my neighborhood for fear of passing out (which never happened, but that's how severe the dizziness was).

Fatigue is definitely gone since the pouch removal surgery. However, I had a baby 2 years ago and am pregnant again, so obviously feeling tired now but nothing like what I had with the pouch in.

I have no regrets about getting my pouch out. For me it was clearly the right choice - my health has never been better. I take no meds, eat what I want, sleep through the night (when not pregnant ) I certainly could not have had children while on Cipro adn in the condition I was in, so I'm thrilled all around to be pouch free and living my life again.

Hope this helps. Let me know if I can answer anything else. I know how scary and frustrating it is to feel how you are feeling and not have any specific diagnosis. It makes it very hard to treat. Good luck.

Jill,

Thanks so much for your reply. Alot of what happened to you sounds similar to what is happening to me and i thank you greatly for your help.

Did you ever come accros any other pouch people that had the same dizziness/light headedness?

Its interesting when you say your dizziness got worse as your pouchitis got better. The only thing i can think of perhaps is your pochitis was better because of cipro, and therefore whilst your pouchitis was better, your dizziness was worse because of the cipro...


Another interesting things is that whilst your doctor first tried to keep your pouch in your body, and plumb back the colostomy back, you mentioned that this didnt work and you were dizzy and fatigued. Do you think its because there was still active pouchitis even though food was not going into the pouch?????

Pleased to hear your thoughts Jil, and wonderful to hear that you have two beautiful children.

I was fatigued with active UC and it did not resolve until about a year post op. I did not have dizziness until I became very anemic though, and that improved with transfusions.

Any chronic inflammation can cause chronic fatigue. But the dizziness does not seem related unless you have other causes, such as anemia, low blood pressure from dehydration, etc.. This does not sound like you though. The antibiotics can often cause this symptom and they can take a while to resolve after discontinuing them.


Jan

Thanks for this Jan. So how long were you fatigued for?? Its promising to hear that the fatigue has gone for you. So how you going these days? What do you take for your Pouchitis?


As for me I had UC for about 4yers and we could never get it into remission, and my fatigue kept worsening. It was one of the biggest reasons why I went for the op. We tried so many things.

I ran some more blood tests today to check for anemia/liver functions etc/iron levels.

The longest i have gone off cipro would be say for 4 weeks and i think the dizziness would get better. Then i would get pouchitis and then i would take the cipro and dizziness would get worse.

So its so hard for me to pick if its pouchitis or cipro causing it...


So in June it will be 1 year after the closure op, and im hoping that the fatigue will go soon.

Also, let me ask if you have pouchitis, then do you get more fatigue?

I havent ever really had the pouchitis under control for long enough for the body to start to recover, and that why sometimes i feel like going back to the bag. But i wont for now, an shall push on.

Thanks again your support Jan. Pleased to hear your thoughts on the above.

I seldom have pouchitis and take Flagyl when I do. I do get fatigued with pouchitis. I also have enteropathic arthritis and I get fatigued when that flares too, so it is hard to sort it out.

I agree that you never really get a chance to fully recover and that may be part of your fatigue problem. It does sound like the dizziness could be due to the Cipro.

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a688016.html

Dizziness is not typically associated with pouchitis. You need to be careful because antibiotic caused neurological symptoms can become permanent if you do not stop the antibiotic in time. I would be trying a different antibiotic if I were you. There are many to choose from.

http://usagiedu.com/articles/pouch/pouch.pdf

Jan

Without a doubt I had chronic active pouchitis in my disconnected pouch - confirmed by scope (something I was told couldn't happen, by the way; part of the way the surgeon convinced me to just disconnect instead of removing the pouch). It was a little more tolerable than when the pouch was connected and I did have 2 or three stretches of 2-3 months off of all meds but continued with the dizziness.

It's intersting Jan mentioning low BP because I've had it all my life. Even when I'm well hydrated, I'm low - usually about 90 over 70. Several times during my illness while hospitalized I dropped to 70 over 50 and the nurses couldn't believe I wasn't feeling dizzy or ill, but I really wasn't. Who knows if that could have been part of it, but they had me monitoring my BP at home, in particular when dizzy spells would hit (I have to be the only 30 year old who had a BP machine in her desk at work) but there was never a real correlation.

Anyone located in Australia able to find the infamous Vitalyte.

Dehydration plays a significant role in how I feel. I would greatly love to try this product.

Cheers, Alana

You might contact the company at:

http://www.vitalyte.com/contact/index.html