Update & alternative med.

[Cara Fusinato]

Greetings. We have so many new people, and I have been a lurker for a couple weeks due to a new job, so I thought I would tell my story.

Let me 'splain . . . no, there's too much, let me sum up . . . Last April I had, oh, let's call it an obstruction, had no idea what Crohn's was, let alone that I had it. They thought appendix, took it out, and my surgeon discovered Crohn's. Yippee! My first doc wanted me on Pentasa (did nothing), Entocort (made me want to kill people), and one of those d**ned immune suppressants (I just couldn't accept that) + wanted to remove 18" of small intestine (I just couldn't accept it either!). A second GI doc was a little more cautious, much better doc. More open to time, watching, meds and alternative meds.

And then, I discovered mangosteen juice (specifically the brand called XanGo which is MUCH more potent and concentrated than the stuff at CostCo or Whole Foods). I gave it a shot, grasping at ANYTHING I could. Has been proven to be anti-inflammatory, anti-bacterial / fungal, and an immune modulator -- so hey! So after less than a month, I felt so well that I got off all meds., didn't have surgery, and for $100 a month in juice (well, my husband drinks it too . . . so really about $60 in juice) I am actually SAVING money over co-pays on rX's and am doing great. Very few symptoms, no pain, and I am able to work, eat and then be in public, and even eat (oooh) pizza! However, I did give up milk to reduce the MAP getting back into my system.

My point in typing . . . for everyone who is really struggling, and I did for the first 8 weeks after diagnosis during a horrible flare . . . hang in there, find the right GI doc to work with you, explore your options, and talk to with everyone here in the forum.

PS -- as for mangosteen juice, it worked for me and it might be worth giving a try, but I recommend XanGo brand because of it's special formulation that others don't duplicate. Read about it online, if you desire, and find a local person who can hook you up with it if you so choose, PM me with any questions, if you desire. I have personally met 3 people who survived end-stage cancer after adding this juice to their diet, probably not a coincidence.

 

[Jeff D.]

Thanks Cara for telling us about mangosteen. That stuff seems to work wonders. I may try some other brands to see how affective they are as well just to check it out. But I may go for the real stuff.

I have also been a lurker for a few weeks as well.

Best of luck

 

[fgillette1986]

So, how did you come across this mangosteen juice? Just researching on the internet, doctor recommendation?

 

[Dekar]

i bought it when u recommended way back.. seems to help me but i really have no idea cuz im not in a flare at the moment

 

[Cara Fusinato]

I met a person who is involved with the XanGo brand of mangosteen juice by chance at the mall where he was buying skin-so-soft from my Avon-selling friend. We got to talking about mosquitoes and Alaska and health in general and my condition. The guy left me a CD and I listened to it and hit the internet for 3 days solid looking for ANYONE who said XanGo brand was hooey. Didn't find it. Decided to try it. Was just at the tail end of a 2 week flare (I had had an 8 week flare, then a couple weeks off, and then a 2 week flare -- I wasn't doing so well when first diagnosed). Hearing of its anti-inflammatory, anti-bacterial, and immune modulating properties (in addition to doing wondeers for blood pressure and tumors) I decided to give mangosteen juice a go. 1 1/2 weeks later, I was out of the flare and feeling great. I cut the meds. in 1/2 and felt the same. Then I saw the GI doc, got the blessing to continue this route, and in another 1 1/2 weeks I dropped all meds. I have had entocort about 3 times (and I mean 3 doses, period) when I ate badly (either didn't chew well or ate fruit or something irritating). So, I have not been on ANY meds at all since summer. No flares, no discomfort, and no multi-rr days (unless I eat A LOT or something really greasy or something, you know, probably would have sent me to the rr if hadn't had Crohn's). Anyway, I like to research, so I performed a lot, went into it with my eyes open and the skepticism to watch for ANY little twinge or pang that would indicate trouble in my bowels. And I am just glad it worked for me. To mention Dekar's comment . . . I'm not in a flare either (yay!) and I am hoping this juice helps me stay OUT of one (wouldn't that be grand? Year after year of juice, no meds, and doing just fine . . . that's my hope . . . I am my own long-term study).

 

[fgillette1986]

Very interesting!

I was talking to my mom today. My parents retired to the Philippines, but they're in the states right now just visiting. I got to talking to her about Mangosteens. Once I described the fruit to her, she responded, "Oh yeah! You mean Star Apples? They're really good. I eat them all the time." I kind of chuckled at this.

So then I told her I wanted to buy a chunk of land over there and have the family grow Mangosteens over there. That way, when I go to visit, I'll have a time drinking that stuff.

Oh, and I ordered a bottle of Xango Juice last night! (0:

How much do you take a day?

 

[Cara Fusinato]

I hear they taste REALLY good, the fruit that is . . . I started out taking 1 shot glas (1 1/2 ounces) 2 or 3 times a day. Then down to two. Now down to one, unless I feel like I might be getting a cold or maybe ate something that might be irritating or obstructing, then I up to two times. I try to stay with 1 1/2 ounces a day. That means that my husband and I can both make it in 4 bottles a month. Some people take 2-3 months before really seeing effects. Some people right off. Have patience. Within a couple days, the achy knees stopped aching and then it worked on my intestines. Keep me posted on how it works for you. I am excited to see if it helps others like it did me.

 

[fgillette1986]

Well, since I'm taking Primal Defense at the moment, it wouldn't be accurate to tell you whether or not it's working for me if my condition improves back to normal. After doing a lot of research on it, it seems the health benefits of taking this juice is great, not just for Crohns. So, I decided to incorporate it into my diet. Perhaps mix it into my smoothies. I fully intend on recommending people to try it though.