VSL3 DS

VSL is okay for a week unrefrigerated, but that's really a room temperature stability. During cooler weather you could ship it unrefrigerated without a problem, but your caution is appropriate for this time of year. 

I hope your permanent ileostomy works well.  I feel like giving up on my j-pouch a lot lately.  Could you please post back and tell us how things are going every once in a while?  

I had a horrible time with my temp ileo in-between surgeries and am scared to death about going to a perm ileo.  My take down was 4.5 years ago and I have and still am struggling with several chronic problems all the time.  I decided to go back on VSL#3DS while taking antibiotics, and timing it at least 3 hours after or before taking antibiotics.  I tried taking them without VSL and got a nasty yeast infection.  I did a week with just VSL#3DS 2-4 times a day and treated the yeast problem as well. Just a warning to everyone.  I feel much better taking antibiotics along with VSL#3DS.

I hope someone close to you reads about your kind offer. 

 

 

TE Marie: I also had trouble with loop ileostomy....getting blocked mostly. So far, no problems with permanent version. Had J-pouch for 5 years, with chronic pouchitis for last two....or maybe more....I had frequency problems the whole time. In the last year, I would do two weeks of antibiotics, then go on VSL3, that would last 6 weeks maybe, then it got to be 4 weeks, then 2 toward the end. In other words, constant cycling between cipro and VSL3. At that point I asked my surgeon to reverse me and he agreed. Had surgery June 1 and despite the fact that I went into surgery on VSL3 and thinking pouchitis was beaten back, my surgeon found a very inflamed pouch! So, I don't think it was ever going away when I thought it was. Sooooooo.......4 weeks out now with permanent ileo, I am happy as a clam.....no butt burn, no "emergencies", no tracking of where next toilet is, and most of all, I am on NO drugs of any kind, no imodium, and no expensive VSL3. Dark horse 

Darkhorse - I'm glad your surgery has improved your quality of life.  My Mayo GI is performing my next pouchoscope the end of June as he wants to do it himself so I am waiting.  In February they got me in for testing right away.  He had the GI performing it to be ready to perform a balloon dilation and it did require the dilation on the efferent side of the pouch.  It didn't stay open. Since we know what the problem is I can wait.  He wants to perform the next one as he thinks it might need dilating by a surgeon under anesthesia. The surgical consult is scheduled too and I am going to ask questions about my options.

 

I appreciate reading positive feedback like yours.  I think 4.5 years has been long enough for me to suffer after the surgeries. The 15 years before them I was diagnosed with UC.  A third of my life has been derailed by IBD. I had to sell my firm and could only work part time 10 years before my surgeries.  

 

I need to give myself 4-6 enemas daily. If I had a permanent ileo I'd need to spend at least that amount of time maintaining it.  It's not just the dilating problem I'm dealing with chronic cuffitis, chronic pouchitis, IPS and a lot of pain from abdominal adhesions. If I do need surgery I'll have her take care of my adhesions too.  I am tired of being sick and tired. I want to go to my grandchildren's ball games, out to dinner and maybe even golf again.

 

Thanks for your support.    

I live in Columbus!  In the midst of moving back...let's try to PM or something.   I am using the Vsl ds.

Sorry folks, I have found a home for my excess VSL-3 with someone who needs it. 

Glad you found a home for it!  Where do you get your pouch care?  I am new to the area and need a doc that knows pouches.

Just had pouch removed. Went to permanent ileo. My last gastroenterologist was at OSU, but he just left that practice. So I don't have a good recommendation......sorry.