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Ulcerative Colitis
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Posted 10/7/2019 1:24 AM (GMT 0)
A friend asked me about UC meds, if I had experience with them.
My answer was I am taking the generic Lialda, 4 tabs daily. When I had a flare in 2015 I was prescribed Uceris and it worked like a charm! No flares since. Fingers crossed.
Btw my Lialda was bumped one more tab but I think the flare started with a restaurant salad.

I just want people to know things can be properly managed with prescription drugs to begin with. I can never go off them.
My heart and gut aches for anyone and everyone who is struggling with this horrible condition!

I tried the clay, spinach sunflower butter and oregano oil. Waste of time and money. That was a time when I thought I was going to lose my insurance so I gave it a shot.

Desperation for a cure. Thankfully, everything is under control. Please don’t let your condition keep you from getting real help. Supplements are not regulated and you may be paying for capsulated sawdust.

I have read and done so many silly remedies that I thought it necessary to post this.


Stay well!
XO
Posted 10/7/2019 4:36 AM (GMT 0)
I suggest you also get on rectal meds.

My opinion...there will always be another "cure" tomorrow and there will always be someone to try them.

q
Posted 10/7/2019 7:13 AM (GMT 0)
I failed all meds, so prednisone and alternative treatments are my only hope in keeping my bowel.

It's easy to make fun of alternative medicine when you're one of the lucky ones who pharmaceuticals work for.
Posted 10/7/2019 9:44 AM (GMT 0)
Real help is whatever works for you whether it's medication or a natural remedy. With natural remedies it is important to get it from a reliable source and to use it moderately. Other than that they can be a very effective, safe alternative. Many people have had success with Qing Dai from CCHerbal. Everyone is different. Do your research and do whatever works for you. xoxo

Post Edited (HJQuinn) : 10/7/2019 3:47:05 AM (GMT-6)

Posted 10/7/2019 12:44 PM (GMT 0)
Mark,

I would never make fun of someone with an illness.

My intent is to warn people of the goofy remedies and snake oil salesmen that occasionally post in support groups. I have tried some myself.
Yes, I am very lucky I can maintain on Lialda alone, since 2008. I am not lucky enough to have this as my only health issue. I have two different types of cancer. I’ve had alot of natural cures suggestions.

It can be a comfort to some looking for good news when there are so many discouraging posts.
Delayed medical treatments will cause more damage. That is the point.

Post Edited (beanie15) : 10/7/2019 6:48:37 AM (GMT-6)

Posted 10/7/2019 1:12 PM (GMT 0)
I'd certainly encourage everyone to stick to his/her gasteroenteroligists advice on what to take as an UC treatment over hearsay and anecdotal stuff from the Internet. It's a lifelong illness, so many of us (present party included) have tried a variety of alternatives, as you never know. In my case, have yet to find one alternative that has helped me. Not saying they cannot, but for me that effort was fruitless.
Posted 10/7/2019 3:12 PM (GMT 0)

MarkWithIBD said...

It's easy to make fun of alternative medicine when you're one of the lucky ones who pharmaceuticals work for.

More than I notice people doing that, I notice people, usually people who have somewhat questionable diagnoses, pushing their diet or supplement on others. I have no problem with alternatives, however, they didn't work for me, so it's hard for me to believe they work for anyone with severe UC.
Posted 10/7/2019 3:55 PM (GMT 0)
If you take some supplement/herb you really do not know what it contains. Herbs usually contains plenty of alkaloids and nobody knows what these alkaloids do to your body in long term using. Claim that herbs are safe is widespread myth. On the other hand approved medications were tested for efficiency and safety. It means that the medications worked for majority of volunteers. And it also means that no significant adverse effect were observed during trials. It also means that probably it will work for you. If you try untested substances there is quite high risk that something will go wrong. It is probability game. I like to have probability on my side. Of course, you can discover miracle cure trying non-tested substances accidentally. But what are your chances? I have tried many alternative approaches during 35 years of living with this beast. Frankly, nothing has worked.
Posted 10/7/2019 5:39 PM (GMT 0)
Mark....one cannot sustain on prednisone. The high price for desperation of keeping your colon will be (for sure) destruction of other parts of your body. Many here can attest to that fact of its usage...as well as others I personally know who have done the same for other health reasons.
q
Posted 10/13/2019 6:38 PM (GMT 0)
I believe some alternative therapies have a place in helping UC, along with pharmaceuticals. It is unfortunate the large amount of scammers out there (criminals, really) that will sell fake "remedies"; it really muddies the waters for people trying to find help. It's tough out there, be sure to do your research and buy from reliable sources.
Posted 10/14/2019 11:55 AM (GMT 0)
I’m tapering off prednisone and it’s made a huge difference, the thought that I might actually go into remission makes me tear over. I have 5 ASA pills and suppositories which hopefully keep me there. I have also added acupuncture from a Chinese medicine guy (once a month) who gives me good advice such as “sleep”, “rest” and “drink warm things”, and I’m following IBD AID about 80% of the time.
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