Need help and wondering

That doesn’t sound like cuffitis to me, just a very irritated bottom. Calmoseptine doesn’t heal wounded skin, though the barrier creams can prevent additional irritation. Plain zinc oxide after every bowel movement might be easier to take than Calmoseptine.

Usually Flagyl would be tried if Cipro doesn’t work, unless there’s a reason to avoid Flagyl. When you can’t find a single antibiotic that works a combination may be more effective. When Cipro alone stopped working for me, and I’d tried all of the other reasonable candidates, the combination of Cipro and Flagyl did the trick nicely, and continues to do so. If you can’t get relief from antibiotics, then a biologic would generally be the next medical step. Do you have a good gastroenterologist? Even the well-meaning surgeons tend to be more focused on (and knowledgeable about) surgical solutions to problems.

I hope you get results soon!

Okay, Zinc oxide it is then. I thought that Calmoseptine would do it, I guess not, thanks.

I can't take Flagyl, they gave it to me before I had my surgery and it made me ill....uh, uh, not for me. I'm on Remicade, since I have Crohn's as well. I do have a good gastroenterologist, but I think that my surgeon is a little more knowledgeable when it comes to a jpouch. I think a lot of my problems are because I have IPS as well....as you can see, I'm a mixed bag!

Thanks, Scott!

Have you tried a significant probiotic dose? I take 4 packets per day of VSL #3 DS, and it does make a difference for me. You might also get some benefit from a very low carbohydrate diet. The Crohn’s and IPS can make this more complicated, of course. Good luck!

I use PB8 every day but don't find that it makes much of a difference. VSL is too expensive for me, is there another probiotic that you think perhaps might help?

That's my problem, I eat lots of carbs with the hope that I will gain some weight, but I don't. Actually, I've been losing since it goes in one way and out the other.

Funny, I was doing really well...taking fiber pills every day and I don't remember feeling so well, except for the IPS. Then I was scoped and have gone downhill ever since.

Probiotics tend to be effective at high doses, and high doses are unfortunately expensive. It’s possible in some cases to force your insurance company to cover VSL #3 DS (I did it), but it can be time consuming and very frustrating.

When things are running fast I found that the fiber capsules don’t mix well enough in the gut. I’ve found the powder more effective.

It might be worth trying a low carb diet for a few weeks, at least, to see if you get some benefit.

Hi, my daughter has success with Florastor probiotic to help with frequency. It's a yeast, not bacteria that her integrative health dr suggested. She takes VSL as well but when she starts having higher frequency and/or smellier bm's she takes more Florastor, about 3 caps 2-3 times a day and it really helps. You can order it on Amazon or buy at Walgreens but it's twice the price.  She also finds eating VERY low carbs/sugar like Scott said helps a lot. She really sees a difference from the food she eats. Most doctors (at least the ones we've seen) don't believe there's a correlation with food but since my daughter has went to a whole food, no refined sugar or processed food, rarely any dairy, she has not had pouchitis. She uses raw honey or organic maple syrup to sweeten her baked goods.

She can't take Flaygyl as it gave her neuropathy and Cipro sent her over the edge with panic attacks/anxiety. Found out after the fact that this can be an actual side effect, supposedly "rare" according to her doctor but we've since talked to a few other people that had the same thing happen to them .  She does not have crohns but as far as blood, my daughter has it occasionally and we have found it is directly related to her stress levels. She sees Dr Bo Shen and was prescribed suppositories for the inflammation in her rectal cuff and that helps within a day. I find it weird that she occasionally has blood for just one day but it's ALWAYS when she is super stressed. Sometimes just one time and done without suppositories.  This is a complicated thing and hard to figure out what works.

Good luck to you, I hope you find something to help very soon!

Thanks so much for your input .... I know that carbs do a number on me, and definitely sugar, which is my worst enemy ... too bad I love it so much. I'm going to have to throw it all out of my cabinets, especially chocolate which makes my rear end even worse. I'm going to check Amazon for Florastor, maybe I'll buy some. I have some suppositories that I've kept in a very cool place. I guess I must have used them in 2014, that's the date on the box...wondering if they're still good.

Scott, as far as forcing my insurance company to cover the VSL, I don't have the energy and I know it's going to aggravate me. 

Hopefully better days are coming.

Hello, Mema.  If you have a Costco membership, or know someone who does, check at their pharmacy. They keep it behind the counter. That's where I bought my Florastor at almost $25 less per bottle than from a drugstore. I also gave up white sugar and sugar products (I use Stevia) and I'm doing so much better. I haven't used Cipro in almost two years. It didn't take long to get used to sugarless food habits, and I don't miss it. Good luck.

Curious, is it cheaper than Amazon?

I have to give up sugar, for me, that's going to be worse than it was to stop smoking!

I would like to know that too. I get 100 caps for $57.99 on Amazon. At Walgreens Pharmacy they are around $50 for 50 caps so almost double the price!

Mema, My daughter is 20 and was a total sugar addict all her life. She finds she can use raw honey in small amounts but almost everyday and she does not get pouchitis anymore. And actually raw honey is very beneficial and is an anti-microbial which is great because pouchitis is caused by bacterial overgrowth. Some people on the J-Pouch Group on Facebook have used Manuka Honey (even more of an anti-microbial) to prevent, even cure their pouchitis. You can go on there and search Manuka Honey to find out more. Honey is also anti inflammatory among other things!  Link with more info attached.

So, don’t be too bummed out, there are options! I use honey in my coffee since I’ve given up sugar as well. I use Stevia as too.  Good luck, you can do it!

https://m.activebeat.co/your-h...REAAYAyAAEgI0kvD_BwE

Interesting article, I never knew that honey was so beneficial. I could do honey with no problem and certainly willing to try it. So I guess I'll have to get rid of all of my candy as well....Yikes!!! I'd rather sit down to a piece of chocolate cake than a chicken dinner. Oh, well........ 

After a while you won’t crave it, really! It will be worth it and you won’t want to go back, you can do it!  Hope you feel well soon.

Thanks!!

At Costco it is 50 capsules for $30.00 (Canada). I took one a day, and that was more than a year ago. I haven't needed it since I cut back on refined carbs, and cut out white sugar and milk. My carb intake is made up mostly of chick peas, brown rice, hummus, quinoa, roasted zucchini, steamed broccoli, sweet potato, raspberries, grapefruit. I do eat a small amount of sphagetti once in a while.

So my pouchitis is officially Crohn's and I have AS (ankylosing sponylitis) and I have gone 8 yrs on Remicade, 1 Humira, and now to Stelara.  I have gained 15 lbs this past year and so I started the Keto diet.  I am doing so well on Stelara that I think I get partial blockages and have ordered ActivatedYou probiotic to try.  Let you guys know how it works.  Go team

Amy, Glad you found something that helps! I can imagine Keto would be a good diet for Jpouch since no sugar/very low carbs. Do you eat dairy?

Yes.  Cheese and whole fat cream.  It is very restrictive the first 30 days but after that it's a few more carbs.  Right now I am trying to keep carbs below 20 and keep my good fats up which has been hard.  I am a big carb and sugar lover and it took about 3 days to get over that.

I did keto for about a month, not nearly as restrictive as whole 30 because you get to have dairy which is huge. But I don’t have a jpouch my daughter does not do well with dairy   Glad you don’t have issues