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Hi. I'm new to this forum. My name is Michele (46 yrs old) and I suffered from severe UC for over 15 years. NO meds could get me into remission. In early 2016, during my week long hospital stay and 2 blood transfusions, I had decided that enough was enough and I was ready to have surgery to remove my colon.  Had the J-pouch procedure done at Cleveland Clinic in Weston, FL in March 2016.  Fast forward to the present, I have been battling a mild case of Pouchitis for the past few months.  Have done 2 rounds of cipro/flagyl and symptoms returned immediately after round of meds were finished.  Dr then put me on a steroid suppository and I'm at end of tapering dose now.  Was told by Dr that if my symptoms come back quickly, then he wants to put me back on Remicade.  I was on Remicade for my UC and it did not do the trick.  I refuse to get put back on hard core meds, especially ones that didn't work for me in the past.  

I went to go see an holistic Iridologist this am.  His findings and advice were that my diet was too acidic and that I need to pay attention to the types of food that I'm putting into my body. I am to continue taking my daily VSL90 probiotic and he put me on a Gastro Health supplement that has licorice root, clove flower,Indian Elecampane root extract and capsicum fruit. This acts as an antibacterial and anti-inflammatory. I'm going to give this a try for at least 3-5 months and see if things improve.  If not, then I'm going to look into oregano oil or frankincense .  

Am hoping that I can finally figure out a way to rid my body of this inflammation!!!

 

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I am interested to hear how this works for you. I am one of those on Remicade for pouchitis. It is working for me, so I am not inclined to come off it. Still, I am always curious about complementary medicine. I’ve tried various things (probiotics and other supplements), and strict diet regimens never really did much for me other than put me in a bad mood. We are all different though, so perhaps this might work for you!

Jan

Hi all,I am a newbie here and the pouch. Just two weeks old.getting used to  all that is being written about. My uc was under remission for a long time due to the holistic(ayurvedic) mecicine. I had the feeling that I am set for life and will be able to do everything and anything I always wanted to do. Between I suffered UC from 2002 but never as bad as some stories here thank God for that. In 2010 due to a flare up  GI adviced me to be on prednisone for a long time. I refused and looked for a holistic doc in LA area who was God sent. But come 2017 June I was  down with incessant diarrhea. After the colonoscopy my GI told me I had high grade dysplasia and have to go in for my surgery.

michelle I wish you the best and holistic will help you find your route to heal and be well.

Do you mind sharing the iridologist info may be in future I could contact him.

Thanks all 

Hi Nara. What type of holistic meds did you use that got you such great results??  

Best decision I ever made was to get the surgery.  No regrets. Wish you the best on your post op recovery. I would advise you to really pay attention to your electrolytes. My sodium got super low and made my recovery very difficult.  

I'm in Pensacola and Dr Jim Bledsoe is the Iridologist I went to.

Thanks

 

 

I'm fairly new to having a J-Pouch as well - had my take down surgery in July of 2017 and am on Cipro for my first case of Pouchitis (I got a little carried away with my diet over the holidays and am now paying for it).  I completely support your holistic approach.  I also want to do everything I can to avoid going back on immune suppressant drugs if at all possible.  

I started seeing an Integrative Medicine doc here in Dallas (she's a Gynecological Oncologist who started the integrative Medicine program at Baylor hospital here) and I like that she has a medical background but also understands the benefits of holistic approaches, including supplements, stress management and acupuncture, to name a few.  She recommended to me reading a book called The AutoImmune Solution by Amy Myers and it has been enlightening! 

I know that we get treated for specific diseases (i.e. Colitis) but really I think many of us with J-Pouches have auto-immune issues, which are whole body.  I know that if I don't keep my diet and stress under control, my immune system could either cause inflammation of my pouch or attack some other body system.  

I always say the diet is key to keeping the inflammation away.  Since my take down 2013 I finally came off most prescription meds.  The only ones I take is Loperamide caps 2 mg 2 x qd. and Hyoscyamine for IBS prn, which really works.   I take 1 qd 50 billion probiotic,  Entera Gam, 1 packet  qd; Prescription Medical Food Product that controls bacteria in gut: dx SIOB.  That just came about and is common in J-pouch and intestinal issues.  This totally works better than oregano pills if u can afford it.   I do take vitamins and use turmeric for pain and ginger for nausea.  The main thing is my diet and I have been on the FODMAP diet since 2014 and it works.  It's only when I don't listen and stray away like on Holidays that I feel the pain.  Because of this combination I don't need biologics and don't want them.  They did not work before surgery.  You have to find your combinations that work and u will!  I do tweak my regime when I feel it's not working.  Always a work in progress. 

Side note:  I recall reading on this site about  Psyillum Husk to help slow down output.  I use to bake with & I know it's a fiber and thought it would make me go more.   But after reading about it the opposite happens for J-pouch it's helps control output.    That's is why I love this site.

Good luck I use tummetic I tried the entergran did not work for me I tried the paleo diet nope nothing vsl nope licorice nope frankincense nope nothing worked I’m on Entyvio for the last 2 years not happy but better than losing my pouch I really hope it works for you ps I found that stress is a big trigger for me 

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