How many people have to take Cipro for an extended time? My daughter's pouch is fine but the small part of rectum the pouch is attached continues to cause a problem. When she is on Cipro, she does great, but she goes downhill fast after she stops taking it.
She is not doing well right now and they want to put her back on it. I'm worried that it may not be a long-term option, but I just don't know what to do.
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I've been on Cipro for a few years now without problems. It did eventually become less effective, but adding Flagyl did the trick. OTOH, have they tried rectal UC meds? This sounds like cuffitis.
She is allergic to Flagyl, so Cipro seems to be the only option. She tried Cortifoam previousl, but it didn't help.
How do you take the Cipro? They said something about 2 weeks on and then 2 weeks off.
I don't take time off from the Cipro because I start to get symptoms within a few days. Some people rotate antibiotics. Choices that work for some (at least for pouchitis) include Augmentin, Tindamycin, Xifaxan, Levaquin (similar to Cipro). Doxycycline was effective for me for a couple of months while I was treating SIBO.
What I meant by UC drugs was more like mesalamine enemas or Canasa suppositories. They are sometimes quite effective for cuffitis, and probably a better side-effect profile than antibiotics.
Neuropathy can occur with either Cipro or Flagyl, though it seems to be more commonly reported with Flagyl. If you get bad side effects while on two drugs you really don't know which one did it.
Most drugs can occasionally cause Very Bad Stuff. They are not risk free, but I'm choosing good health with the risk of side effects over the certainty of being unable to live my life in a reasonable way.
Beware of tendonitis too.
No one warned me about that on cipro.
Every time that I went on it I felt like my achilles tendons were made of celophane...They felt dry and crinkely...
Ended up on cipro for one yr in '99-2000 and it nearly destroyed them...you need preventitive efforts if she starts having knee, hip or tendon pain...please have her tell her doctor.
Sharon
I ended up having to take her to the ER at Johns Hopkins because her creatinine level was 5.8. The are sending her to ICU and paging Nephrology.
Has anyone had sudden kidney problems from taking Cipro?
I haven't, but it is not unheard of. Was her creatinine level normal before Cipro, or was it already elevated and worsened on Cipro? I know that a reduced dose is necessary if there is renal impairment.
Most often it is reversible if caught early enough. Hope this turns around quickly.
Jan 
Her level was normal (0.7) in August and she has never had a problem with her kidneys.
She took Cipro for 30 days and then started feeling bad about 10 days after the prescription was done. She started taking it again on Thursday, so I am hoping that the levels were only elevated from the Cipro and will decrease now that they stopped it.
If if its not one thing, it's another. Sheesh!
I'm sorry, chalmersd - that's not what you needed. I hope her recovery is swift and uneventful.
Just in case it's helpful (at least in the future): most medications are a bit less likely to cause trouble if taken with plenty of water. Also, numerous medication side effects are more likely if you're dehydrated, particularly kidney issues.
They have ordered an X-Ray because they are checking to make sure she doesn't have a micro-perforation at the anastamosis. If they see anything that appears to be air, and hey are going to Life Line her to Cleveland Clinic so she can be seen by her surgeon, Dr. Remzi.
Jeffrey has a micro tear in his pouch as well. Too six months to find it, but it looks like it is finally healing!
Have not been on in a while, too much happening. But Jeffrey is doing reasonably well! Hope everyone is doing well too.
Praise GOD - there is no air!
She is urinating more so that is a good sign.
Congratulations! Finally some good news!
Keep us posted
Sharon
Wonderful! I know how much of relief that is! Keep it going!
Great news! Her creatinine is down to 4.4 from 5.2 and her CRP & WBC are also trending down.
Very good news!
Jan
