Dr. Shen prescribes lactulose. I always thought it was counterintuitive, because it is a pretty potent laxative, but he IS the reigning expert/guru on pouches and pouchitis. I imagine it is about dose, more than anything in regard to how your gut responds. Plus, not having a colon matters too.

Jan

I am sorry I don't understand your post! Do you think they are worth it or skip it. It is so hard to know what to do.

thanks,

I don't know, that why I said what I did. But, if it was recommended, I would use a prebiotic that has been shown to actually have an effect. I think the one article I read mentioned lactulose, inulin,and galactooligosaccharides. Not sure if your kiwi stuff is one of those. There's a lot of stuff out here that's being marketed without any science behind it. Doesn't mean it is bad, but then you are basically running your own experiment. I guess it just depends on what you are looking for, your level of patience, and how much you want to spend on it. I'd it expect it to take several weeks to 3 months before you'd know if it was useful to you.

Scroll down to the part about prebiotics:

http://www.vhjoe.org/Volume7Issue2/7-2-9.htm

Hope that explained it better.

Jan

I have. I believe it's called ecobloom with inulin.

Thanks!!

Jeane have you taken prebiotics? I am confused by your post. Can you provide me with any information of your comment? Anything would help very much.

Thanks so much

I have taken both probiotics (still do) and prebiotics. Unfortunately I am not so sure either has really worked for me as I do have chronic pouchitis and have been on antibiotics for over 16 months. I did not take the prebiotic for long enough to really see if it did anything, but I do take VSL3DS at least twice a day and have been for months.

I have chronic pouchitis every since I had my take down which was March 16, 2012. I have been living on Cipro. It was suggested to try prebiotics. I am so tired of trying different things and also trying to eat different things just to see if it works. And everyone is right, it is an experiment. I never ever thought of colon cancer let alone a jpouch. Now my heart breaks for all of us who has so many issues. I know one thing I think for sure, I won't ever have a weight issue. I guess that is the best outlook to have with all of this headache we have to deal with everyday.

I asked my pharmacist about kiwi and she said it is great for you. Well when I googled prebiotics that is what came up was a company that made prebiotics out of kiwi. So now I don't know if I want to try them and see what happens or what. It seems to be all about money...

Thanks so much for the help I can always count on you guys.

Jeane - What prebiotics did you try? Also, are you living on cipro? I didn't find VSL#3 worked for me, but then again I don't think I took it long enough. Sure is expensive


Thanks Jeane & Jan Dollar you guys are awesome!!!!

grandma,

Unfortunately I am in the same situation.......chronic pouchitis since takedown in May 2011. I have been on augmentin (875 mg X2 daily) every day since then. It is a very distressing situation as I have tried many times, albeit, unsuccessfully to get off antibiotics and I also have tried numerous other things to no avail. I do take vsl3 DS daily as it does seem to lessen my symptoms when they are very active. I too suffer from joint pain and muscle pain due to the pouchitis.

I have resigned myself to the fact that until they come out with a better medicine or the antibiotics no longer work for me that I will be on them indefinitely. My only hope is I am not doing long term damage to my health by being on them chronically. I want to hold on to my pouch in any way I can.

The name of the prebiotic is ecobloom. It is worth a try. Also, fish oil and inflammatory fighters like olive oil, turmeric, ginger, green tea, salmon, blueberries etc. may be helpful if you can handle some of these (speak to your doc first though). Etra vitamin D can be helpul also and I have read about l-glutamine but have not tried that as of yet. I also eliminate sugar (as much as possible) and wheat/white flour which does seem to help. I pretty much only drink water and eat no pre-processed or fried foods and have starting taking powdered fiber daily.

If you look on-line you can find many natural remedies for inflammation to try. When we are faced with chronic pouchitis, I think we will try anything. Hope this helps.

Jeane,

I am glad to know I am not alone but I wish no one had to go through this. My heart breaks for you also. I will look into the other things you suggested. Thank You. I haven't found much that works and Cipro doesn't make me solid either. I am on so much medicine and I even have codeine for really really bad days. I love blueberries to eat right out of my hand but they don't like me. OMG they killed me this summer. They are my favorite fruit. I did just buy Kifir. I think I drank to much. Now I am not feeling well. But maybe it is not that. I don't know. I can't say as though I love my new life but I do take one day at a time. I would love to talk to you on a one on one basis through email. You give me hope. And at least maybe we can help each other. My family (Hubby & son) are great and very very understanding but some days are just so hard. I woke up this morning crying cause I hate getting out of bed and heading right to the bathroom. Plus I can hardly get out of bed.

I will try and get with you this week through this site. I am going to go and rest now. I try to stay busy during the day and it sure hits me at night time. Thanks again for all the support and advise. You are amazing. I truly do appreciate it very very much

Brenda

Benda,

You can private message me any time. You are smart to rest whenever you are able.

I will try and think of other things that may help you. I too am thankful for others on this site. They have helped me get through some dark days myself.

One thing I can say about pouchitis is it used to scare me much more several months ago than it does now. I know that a couple of bad days are often followed by several good ones if I am careful with diet etc. I have my scope next week and I am praying things have not worsened as I do have more severe symptoms now than I did a few months ago and I really don't want to fall into that minority who loses my pouch due to chronic pouchitis. At te rate I am going, I do not see holding on to my pouch for another 10 years or more as a real viable option for me and at 49, it does make me sad.

Jeane,

I will get with you soon. I have a very very busy week. I just had my scope done the first week of August. He said it looked great and I was lucky cause my surgeon was there also and wanted to look at it. So I feel like I got two for one. They didn't see any pouchitis but I had to go back on Cipro about 4 days before my scope. I had no choice. So I think they made have not helped them be able to see what was really going on. But I just had my take down March 16th, 2012. I turn 45 this week. I just keep praying. I am disappointed how it has turned out so far. But so far my GI dr. is letting do whatever I need. So far so good since I have to figure everything out myself and with everyone's help on here!!! Talk to you soon.

Small bowel bacteria overgrowth has the same symptoms. It is what I have. There is no test for it but just going on antibiotics to see if it helps usually tells them. Did they not go over that with you? My pouch is fine and the scopes show it flawless so that was my diagnoses. I just started on Luctolose Solution with a smaller antibiotic dose to try to grow healthy bacteria.

Vanessavy,

No they didn't go over this with me. Everything is so frustrating..... I am taking notes and I go and see the GI dr. Oct. 16th and I am taking all my notes with me.

Thank you so much.

Also, what is Luctolose Solution and where do you get it at? Is it a pill? And how do you take it? Any information on this would greatly be appreciated!!!

Thanks,
Brenda

Luctolose Solution is prescription. I got it from a GI by the name Bo Shen at Cleveland Clinic.

vanessavy,

Actually, there is a test for bacteria overgrowth as I had one over a month ago and my results were negative. You do not eat or drink anything past midnight the day before your test. Mine took 3 hours. You drink a 4 oz cup of some sort of solution, then you breath into this ballon every 15 minutes.

Not every GI does it. My GI does not but that is another GI in my town who is open to other procedures and he believes in VSL # 3. Not every GI does though.

I would google test for bacteria overgrowth and check around.

Rocket

Yea you can do the Lactoluse Breath test I guess but for me they could tell I had it without it.

I believe that plain old honey s a pre biotic

vanessavy..i just came back from visit with dr. shen..after three different exams in 4 years9this one just this past week) my pouch looks great no inflamation..we have always thought i have antibiotic dependent pouchitis however and have been on rotating antibiotics for four years..having to change them when they become ineffective..

this time around dr. shen mentioned he now thinks i might have bacterial overgrowth as you but he did not suggest i try lactolose instead he told me to try belladonna and opium..keep down the sugar and until i review notes fiber? just got home yesterday..

he said he has about 100 of us of his 1700 patients he thinks has bacterial overgrowth..

i am know on tindermax as my augmentin stopped working for me after 7 months ..sigh!)up until now i am dead meat without antibiotics..unbearable ctually..with them i have no severe irritation which feels like broken glass..feeling of not emptying but do go to bathroom a fair amount of times and always after eating something never fails!!

the b/o is in suppository form..i remember years ago trying lactolose and it was making me go even more..have not tried it in 4 years..wonder if lactolose and b/o are his treatment for bacteria overgrowth..it does also strike me as counter intuitive that probiotics would not be helpful as well..my problem is i often think of things to ask him after i had time to think about what transpired..i have been taking cultyrelle and ss, bulgari now for two years to fend off c-diff which i have had a few bouts with..actually thought i would add align because its bifitus to culturelle for gg lactbicilus..

anyway need to review my notes also recorded..

i do not plan on stopping my antibiotics if i start the b/o until i feel more secure..but wondering if lactolose and b/o are both treatments for bacteria overgrowth for dr. shen...

needless to say today i overdid dark cholate..just because!!!

rebe

rocket is there really a test for bacteria overgrowth.?wonder why shen did not mention it?wonder if i can get it here in santa barbara...will also talk to my son who had a serious intestinal problem..run away candida and leaky gut...he has to take probiotics and is very careful with his diet..

rebe