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Posted 10/3/2007 3:46 PM (GMT 0)
Nephrologist doesn't want me to try to take any 5-ASA's and GI agrees w/him, my short lived thinking I was getting better yesterday is gone (back to where I was) and now GI wants to put me on Cipro(sp?) an antibiotic to help with the diarreah and do a lab test tomorrow to see if I can take imuran (sounds like the side effects to that are gonna be awesome) also suggested remicade.  I would probably have to go to remicade to be able to start a family someday.

I am going to get the ball rolling on my second opinion at lunch today - w/new doc at the Chron's and Colitis center but prob wont be able to get me in for a while i'm sure.

I need to get this flare under control (have my monthly cramps on top of my intestinal cramps) and slept w/a heating pad on last night.  I am miserable and I am completely annyoing myself being this way.

I am so flipping mad (about situation) and scared and about to bawl my eyes out.  What if those don't work either???  I know I should be positive but this just blows!

Sorry for my vent......I need to get some work done but I feel so tired and can't concentrate and am miserable!  GRRRR!

Posted 10/3/2007 4:14 PM (GMT 0)
No need to apologize for a vent. That's what makes this forum so great because you can vent to the people that truly understand! The only time I was on Cipro was for an infection and it didn't agree with me in the least, but if you do take it, I hope it helps you. As for the Imuran - I'm on 6mp which is similiar and all I have to say is that after much hum and ho'ing, I am so glad I broke down to take it because I finally have my life back.
Posted 10/3/2007 5:03 PM (GMT 0)
TAKE YOUR PROBIOTICS WHILE ON CIPRO!

Although, unless you have an infection which he tested you for and found, I don't know why in the world he's prescribing such a broad spectrum antibiotic. I got c-diff from Cipro. Be very careful.

We all understand your frustration. I've been on Imuran for six years or so and it'd really done wonders for me. Like you, I was really, really apprehensive about the side effects, but I haven't experienced many, if any, and have only had very mild flares since i've been on it.

Hang in there. You have a right to be upset.

Hugs,
Mitz
Posted 10/3/2007 5:38 PM (GMT 0)
thanks Red & Mitz!!! I think the prednisone is making me a little melodramatic too. He did test my stools but doesn't have all the results back, says the cipro is to help w/the diarreah.

Mitz - what's the c-diff?

Thanks! I am just going to keep on pushing forwad and hoping for the best and work on educating myself....what else can I do?
Posted 10/3/2007 8:14 PM (GMT 0)
I would not take Cipro unless a bacterial agent has been identified in your lab tests. That doctor you've been seeing sounds like a real idiot. (Polite term!) / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

Posted 10/3/2007 9:05 PM (GMT 0)
Cipro is VERY powerful stuff, so I want to second Mitz here.....  Make sure you take probiotics while you are taking Cipro.  It was WAY too much for me, and I had some bad reactions to it.  I'm not trying to scare you, but just make sure you keep an eye out for the side effects.  It's just so strong....
Posted 10/4/2007 1:15 AM (GMT 0)
And I second K.K. Baker's message that Cipro is VERY powerful stuff! I had to take it for a staph infection contracted while on hydrocortisone (Cortenemas) for UC in 1990s. It got rid of the staph, but it made my UC so bad that I nearly got blocked on the left-side. That's when I switched to a gastro subspecializing in IBD treatment, who monitored my condition very carefully for several months to get me out of that mess! And that's why I urge you, Beth, to beware of this doctor who needs to read up on your type of case. You should not be bombarded with all kinds of drugs when you are already having kidney complications. With this jerk wanting to pile on more meds you could develop liver problems, too. Take care & focus on the UC Center arrangements. Let this guy mess with his other patients in the meantime! Hopefully, someone will get after him for his incompetence soon. / Old Hat (nearly 30 yrs with left-sided UC [etc.] ... )

Post Edited (Old Hat) : 10/3/2007 7:18:52 PM (GMT-6)

Posted 10/4/2007 1:50 AM (GMT 0)

Hi there -

I have been on Cipro for two days now, along with another antibiotic called Flagyl.  I feel like they are just trying to bomb me with anything they get their hands on and hope something works.  I actually feel a little better today, but don't know what to attribute it to...cipro, 60 mg of pred? 

Imuran did not work for me because it messed with my liver, but it has helped a lot of people so it could help you, too.

Reading the side effects of all of these drugs is really scary...especially if you are on steroids.  I find I am crying at the tiniest things right now, and I am a very even person when I am healthy. :)

Good luck and make sure you keep yourself educated.  Ask your doctors questions and make sure you take an active part in all decisions.  I need to more of that myself!

- Kris2336

Posted 10/4/2007 3:50 AM (GMT 0)
I was on 1000mg/day of Cipro a month ago for what my family doctor thought was a urinary tract infection. I was 99% symptom free while I was on it. It was pretty much the day after I started it too. I'm planning to ask my GI if he will let me try some lower doses for a few days to see if it does it again. I doubt it's a long term solution to controlling symptoms, but it's a hell of a lot better than going on prednisone to get some relief.
Posted 10/4/2007 4:34 AM (GMT 0)
Beth, please listen to these people about the Cipro... c-diff sux. I was on Cipro months before being diagnosed with UC. I completely understand the totally awesome (possible) side effects of Imuran. I have asked to be put on it, and been rejected by my GI b/c she thinks I am too young (I am 23). I have also asked about Remicade, and she just seems to be dragging her heels...
I noticed that when I had my period I had a flare, so I asked to to put on a 3 month pill, so I only have a period every 3months and it has helped TREMENDOUSLY!! Just stay on it... the doctors... the lastest research... when I got pregnant I had been in remission for 2 years! At diagnosis I had left side UC, after another colonoscopy after I had my daughter I had pan-UC. If I had stayed on top of it I firmly believe it would not have progressed. I understand the rollercoaster steroids put you on, but so does a flare... The way I look at it is... This is my disease, I will own it. I will do whatever is necessary fo rme to live a positive life, even if that means forfeiting chances at additional children... what kind of mother am I if I can't be an involved one? Just remember, the side effects aren't guarenteed side effects...
Best wishes
Posted 10/4/2007 11:17 AM (GMT 0)
C. diff

http://www.cdc.gov/ncidod/dhqp/id_CdiffFAQ_general.html

Posted 10/4/2007 2:15 PM (GMT 0)
Beth75:

C-diff is clostridium difficile. It is also known as antibiotic-associated colitis. The long/short of c-diff is after taking antibioitics, all the good germs are killed in your gut, allowing all the bad germs (c-diff) to proliferate, and they produce a toxin that attacks the lining of the colon. There's A and B c-diff bacteria.

The other problem with c-diff is it can be a devil to get rid of. It's a spore-forming bacteria, so that means when you try to treat it with Flagyl or even vancomycin, the spores can survive the onslaught of antibiotics designed to kill it, and after you are done with the Flagyl or vancomycin (the standard treatment for c-diff), the spores then sprout and repopulate your colon.

I can't impress upon you enough to take your probiotics. I was prescribed Cipro for a nonexistent bladder infection on a preliminary diagnosis that turned out to be wrong. I took three days of them. Six weeks later, I was so very, very sick. Two courses of Flagyl and one of vancomycin, and three or four months after that, I was finally better. Less than a year later, I was diagnosed with left-sided UC. Before that, I had asymptomatic proctitis.

Be careful with EVERYTHING you put in your body. And if your doc actually prescribed these antibiotics without having any finding that you had an infection, he ought to be fired. Today. No, make that yesterday, before he did such a bonehead move at your health's expense.

Mitz

Good luck
Posted 10/4/2007 3:41 PM (GMT 0)
I was on Cipro for a sinus infection and IT gave me D. Blech! Definitely use the probiotics!

Pred made me all weepy one minute, madder than a hornet the next, and laughing like a mad hatter the next. Fun, huh?

Imuran, it has been great for me! That and rowasa allowed me to get of the pred and get my life back. Side effects haven't been bad - just some off the way, very intense dreams!

My GI, before I moved, told me that he's had many, many women deliver healthy babies while on immunosuppresants. It's far better for the mother to be on them than to flare while pg. The flare is what is worst for the baby. So don't worry too much about that!

Vent away! Sometimes just the act of getting it out is super calming. Take care!
Posted 10/7/2007 8:31 AM (GMT 0)
great great great GRIEF..... Was just put on Cipro cause I had a sneaking suspicion my fistula was getting infected... Also started taking Asacol again as I wait for insurance approval for either Humira or Remicade. Anyways... seems that about a day later after taking cipro I noticed the diarrhea I was already having was much more mucousy ... please tell me that doesn't sound like a possible CDiff issue....
Posted 10/7/2007 3:38 PM (GMT 0)
HiJenks - I'm not sure. Best to call your doctor and ask :)

Feel better soon!
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