Well, on my third set of meds. First was 7days, felt great than ****, than 10days, felt great, 4 days off meds **** again! I had my surgery nov 22nd! I haven't even had a chance to enjoy this pouch. My first follow up appointment with Dr.Cohen on monday will be discussing having this thing removed. The cipro and metro work great when I'm on them (except for the upset stomach/spinning and everything tasting like metal) What I would like to know is...wont I become immune to these drugs, how long can I stay on these drugs? I wanted to start trying for a baby after I was healed. Sorry to sound so negative but dam, I was home 16 days after surgery and already taking meds for pouchitis. I was flared up with the UC during my preg, will these drugs be safe to take? Any advice?

Everyone's reactions to antibiotics is different. Flagyl most of the time worked extremely well for me. At one point was on it for over 7 months. Sometimes, it would do absolutely nothing for the pouchitis. Now all of a sudden, I am allergic to it. Recently went on cipro, and it worked very well for me. Others have major joint problems taking it. Kinda like the j pouch in that it is a crap shoot. Some experiences are good, some bad.

dpaws....

Don't throw in the towel. You are so early in recovery and this does take a LOOONG time for some of us. I have been on antibitotics since my takedown last March and having some other issues as well. My surgeon has me on augmentin (no sides effects compared to flagyl etc). I just got scoped the other day and also haves some mild cuffitis and had an anal stricture dilated (third time) and I am on suppositories for the cuffitis. Throughout all of this, every time I get down from the pain, sleep disturbances lack of patience, additional drugs when trying to have the surgery to get off of them, etc. my surgeon always provides me with hope that I will get through this.

My point is you should brace yourself for some setbacks and if you have very few, consider yourself very lucky as it is not uncommon to have some complications after such an invasive surgery. If you are patient and work with your surgeon, hopefully you can get past the issues.
Remember it can take a year or longer for your body to fully adjust to j-pouch surgery and it will test every ounce of our strength and patience, as well as that of any family members you may be living with. If you feel you cannot tolerate the time and other issues you may face during recovery then you can always revert to an ostomy if you would prefer.
Best of luck.

dpaws,

i was in the same boat as you. i ended up with recurring pouchitis staring about 6 weeks after take down. i responded well to the meds, and also wanted to have another baby once i was recovered. i was on an off cipro for about 3 months (once i realized this was chronic) and then discussed meds with my OB and GI since i wanted to get pregnant. i tried augmentin for a month (since it's very safe to take), and it worked great. we decided to try for a baby, and then it happened right away. i stayed on the augmentin pretty much the whole pregnancy. it worked amazingly well, until the third trimester. the pressure on the pouch and the antibiotic become less effective causing bathroom trips to go up. i used flagyl a couple times and then would go back to the augmentin.

for me, taking antibiotics that work, is much preferred to going back to the bag. i live a very healthy, normal life on the meds.

to your question regarding the effectiveness of the drugs, yes, they do become less effective over time. you need to rotate them. i come back to cipro every few weeks and it still works great. pepto bismol has been amazing though! i was off antibiotics for a good three weeks. may not sound like much, but a huge breakthrough for me. i'll be going back to it once this round of cipro is done. ps...you can't take pepto when pregnant though.

I too had pouchitis since takedown. Yes, it is frustrating at times to know that I still take medicine everyday and have to watch what I eat. But compared to my UC days, this is much better.

It may take a bit to find what antibiotic and supplements work for you. I take VSL#3 DS with breakfast, Cipro 500mg at lunch (tapered from 1,000mg), and VSL#3 DS with dinner. If my belly is having a tough day I will take Pepto Bismol in the AM & PM as needed. I don't take it every day.

Like clz81 said, the antibiotics can become less effective. I've been on Cipro for 6 months now, and I am beginning to have more issues. My follow-up is in March and I will talk about switching antibiotics then. If I can wait that long. Also, Flagyl did nothing for my pouchitis, so it goes to show we are all different.

Good luck in getting it figured out. Those early days are not fun!

quote:

how long can I stay on these drugs?

I have been on them 16 years, rotating cipro/flagyl, xifaxin, and augmentin as well as a few others with pentasa. I can't get off. Probiotics/other treatments were attempted and failed. Antibiotics, if rotated, can be used long term, but the recommendation I have gotten from my doctors is to having periodic blood testing on my liver chemistries which have been OK. Yeast infections are a concern, but if you properly rotate the antibiotics and take precautions to keep dry the areas of the body that can get moist (armpits and legpits), you should be OK.

thanks for the advice, I feel alot better now. I will see the doc on monday. I thought I was cursed but seems there is alot of people going through the same crap I am. Thanks again

dpaws, I am really sorry that you are one of the pouchers who got hit with pouchitis so soon off the bat. I was one as well. It was almost immediate and I was foolish enough to think that this must just be the way having a pouch was. Finally, after quite a few months, I found this site and read about pouchitis. I went marching (well, in my head I marched in, in actuality I was so sick that my Mom wheeled me in) into my old GI and demanded to know why he hadn't told me about pouchitis!! He seemed confused about what pouchitis was, so I went to my surgeon (which I didn't know I could still go to) and she prescribed me Cipro and sent me to another GI.

Many GIs and years later (5 years this month), I have found a regimen that mostly works for me. I am not saying it will work for you or is perfect, because I still do have small and large flares. The antibiotic I take everyday is Xifaxin. I know it doesn't work for everyone, but it has been great for me! There are little to no side effects and is MUCH safer than Cipro or Flagyl. I am also on a cortico-steroid, Entocort, everyday. I take quite a few other things (through trial and error found out that a low dose antidepressant, Lexapro, really helped with my pouch and also the anxiety that I had developed). And I do take probiotics. But just in terms to GI meds, I have really found the combo of Xifaxin and Entocort extremely effective. I also use Pepto Bismol almost everyday.

My doctors, both GI and high risk OBGYN, have said that (aside from the PB), my meds will be safe if I should ever try for a baby. It is something I am starting to think about as I am now 33, and engaged to my boyfriend of 10 years who has walked every gruesome step of this disease beside me.

I still use both Cipro, Flagyl and occasionially Prednisone (although not for over 2 years now) when my flares go crazy. But by only using them when things get bad, I do not build up a tolerance to them.

In terms of this still being the first 6 weeks of your pouch, please take some hope that your problems do not mean your pouch is broken. Doctors should be very upfront and frank and tell all patients that the recovery time is really at least a year. And sometimes it is more than that. Don't forget-you have just had a surgery that has completely changed your digestive system and you have organs now working in ways they were not intended to, plus you have lost a significant chucnk of your GI system. As someone has mentioned before, it is a BIG deal to lose your colon and large intestines. It's no walk in the park and it is a serious trauma to your body, especially if you were sick going in. Just think of how much your body has been through, and I always tried, even during days that I thought I would die, to maintain pride that I was still alive and tough as nails. Everyone that has gone through a serious medical conditon or surgery is so strong. When those sleepless nights and endless trips to the bathroom cause you to cry or scream, try to let your heart fill with pride and strength and maybe a glimmer of hope. You deserve to feel all those things.

I wish you a brighter prospective and pray that you find some relief soon. Do not be afraid to ask for pain medication either. I know some feel strongly against it, but I finally realized that daily pain management was the only way I could be functional enough to work. Some days I feel ashamed, but most of the times I just know that I need that pain blockers, as well as the constipating effects of narcotics. I take as little as I can, but it is a part of my life, and certainly ask for them if you feel you need them, especially at your beginning stage.

I hope that being on this site can provide you with comfort. Know that we all do pray and care for you and want nothing but for you to feel better.

Prayers coming your way!
Tammy

thanks again, I get more medical info from you guys than the 4 min conversation with my surgeon.(Great doctor just really busy) 4 days off my third set of meds...feeling good knock on wood.

Hi, just want to add to those that are saying "hang in there". Its true that everyone and every situation can be different but I have had the j-pouch since Dec 1999 and so very glad that I had this instead of that *&#@** bag. And I will take pouchitis anytime over UC and all of its miseries.

In the beginning, I had frequent pouchitis, frequent accidents, daily lomotil, and a burning-volcano butt. Now, its been almost 2 years since my last bout of pouchitis, no burning butt, much more anal control and infrequent lomotil. UC sucks but at least there is a cure unlike Crohns.
So hang in there. When I am getting depressed about these issues, I tell myself -------- there is always someone worse off that I wouldn't trade places with and hey, its usually "better than a poke in the eye with a sharp stick". Keep your humour and keep in touch on here. TJ