• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Successfully Living With Crohn's

Cara Fusinato

Sarcastic Forum Comedian
Greetings all! I had my gallbladder removed in 2000, and I had some changes to my GI system, but everything fit the bill for gallbladder loss. In April 2006, I created "the perfect storm" by taking codeine, eating burgers for several days, being under massive stress, exhausting myself physically, AND wolfing down some pizza without particularly chewing. I ended in the hospital in extreme pain. They removed the appendix, but it probably didn't need it. Inside, they found what my surgeon calls "the most extreme case of Crohn's he had EVER seen in a patient living or dead in his 30 year career." Creepy. He took pictures, internally. Creepy. He wants to submit them to learning journals. Even creepier! I had a colooscopy and I was so inflammed the doc. couldn't get the scope past the strictures. Upper GI and small intestine follow-through revealed strictures in the 18 inches just where the small intestine joins to the large. My first GI doctor wanted to do immediate surgery, followed by enticort, Pentasa and immune suppressant. He was very ugly with me when I wanted to wait it out a bit. I went to a new GI doc. Great guy. Pentasa, VSL#3, and immune suppressant after 6 weeks to allow the flare-up to subside. 8 weeks! I could not eat solid food. I was in pain every day. I researched and everything I read was dismal. No one lives happily ever after with Crohn's. Not that I saw online. Finished that flare-up, did good, ate a vege salad. Two more weeks of flare-up. Not so intense. THEN, I met the thing that changed my life! XanGo Brand mangosteen juice. Hours, and hours, and hours of research, DVD watching, CD listening-to, and conversations with real people, prompted me to try it. 1 1/2 ounces 3X a day. In 1 1/2 weeks, I cut the Pentasa in half and dropped th VSL#3, and my GI doc. and I decided to hold off on immune suppressant. He told me to keep on the juice and report in 6 months. At 3 weeks, all meds are gone. No pain, no inflammation, reduced bathroom visits, and signs the strictures have relaxed some and food goes through. Acid reflux from the slow digestion, GONE! Even some knee arthritis is gone. I have found a miracle for myself and now I am living successfully with Crohn's. I'd be happy to tell anyone about this juice or hear of anyone else who has tried it. Life is good again and I want to dance, work on our farm, and shout from the rooftop how happy I am about how I feel.
 

mikeyarmo

Co-Founder
Welcome to the Forum!

I have never heard of the juice you are talking about before. Maybe you can post a thread about it in treatments to talk about what it did for you. I am glad you found something to work for you though.

That must have been scary to hear the doctor tell you what he saw in you (how bad the Crohn's was)!
 
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ElaineH

Guest
Hi and welcome to the forum! Glad you found something that works for you.
 
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Valentina

Guest
Cara Fusinato said:
No one lives happily ever after with Crohn's. Not that I saw online.
well, welcome to the site.. hope we can show you that yes you can live happily ever after! lol
were all so different with this disease, what works a miracle for one person can be a painful nightmare for someone else. Im glad you found something that happens to work for you. hope it lasts, and you can stick with it for years and years.
my DR takes pictures of my lovely crohns as well, as soon as I get to the office.. there I am right on the front cover of my file. yuck. lol
 

Kev

Senior Member
Hey Cara... Welcome to the forum, glad you found something that works for you. I have never heard of this stuff, and would enjoy finding out more about it. I have experienced (apparently, according to my latest GI) extended periods in my life where I had IBD, but was in complete remission (not sure if that is the 'best' term for it- just that I was completely symptom free and ate/drank anything at all)
Periods ranged from a decade, then 1/2 decade, now down to 1 -2 months at a time. I bring all this up because I recall all too vividly how I felt when my 'miracle' cure only lasted 2 months. I hope things go differently with you, and that your IBD is gone forever (i.e. that you remain symptom free & eat whatever freely). OK?
 
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Jonny

Guest
Hi Cara welcome to the forums .Glad your feeling great and found something that works for you.
 

Karen

FRIEND 4 1 & ALL

I pray that you have a good time ... meet lots of folks & have a great time here with us. I am GRANDMA BEAR aka KAREN. The group here let me in due to the fact that my husband is the one with CROHN'S & the support here is wonderful so have a great time !!​
 
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xrayzerase

Guest
hi cara-
wow--i have to look into that mangosteen juice asap...thanks for that info :)
andrea
 

Cara Fusinato

Sarcastic Forum Comedian
Do your research, talk to your doc, reduce meds very slowly and only if you see appropriate results (all of these things I did quite completely and very carefully) and perhaps it will help you too. I know that today I had the very worst day with about 5 different sources of severe stress hitting one after the other. I have had less stress than that and ended up in a flare-up or rather strong pain. I'm just fine and ready for an evening out and my husband's high school reunion in lovely Monterey on Saturday night. That juice is totally doing something for me!
 
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xrayzerase

Guest
i hear you on stress...my dad has an op in 2 weeks (just had one 2 months ago) and my cat (who is like my child) has had some troubles...so-its been a rough few month--stress definitely messes with the flare ups--but..how to avoid it!?
i am so glad you are going out saturday night-i hope you guys have a great time!
ps: is it ok to ask where you get the juice? (it's expensive...but..sounds worth checking in to).. i will ask my dr if it is ok w my meds(i know some stuff-like grapefruit-can cause trouble w meds..so..this is new..but-wow-it looks like an amazing juice..(don't want to stop the meds --well..at least not now..though)..but i will be getting the juice-i'll let you know :)
 
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Cara Fusinato

Sarcastic Forum Comedian
You have to get the juice from a distributor. This is the part I totally hate. You can put XanGo Distributor and your city and find someone local. If all else fails, you can e-mail me and I can hook you up. I don't want anyone to think I am pushing it or came here to sell to people. I came here because I am ill and on a med (albeit alternative) like everyone else. Anyway, most distributors have a website of some form and you can easily find them locally. Like I say, try it out, keep going on the meds, see if there is more improvement than just the meds are doing, and if you decide to drop the meds, reduce a little at a time with doctor's attention too.
 
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