Friends Telling me to Take Herbs to "cure" my UC...

I agree with Uniform Charlie, there is so much truth in what he wrote, lol. Healthy people cannot truly relate to someone that has chronic health issues of any kind. Even close friends who try to understand, there is still this nagging little bit in them that thinks, well if you did this or that it would probably help you. This is why I will never attempt to educate someone. There is too much stuff found on tv & the internet that is just ridiculous. But hey, it sure sounds good.

People ask me all the time, even neighbors, how are you, I say I'm good, how are you doing. This directs the conversation back to them. Even if I am doing really bad, I always say this, it works.

If I crash sure the husband & kids know, but they have learned they will be told what they need to know. We move on to the next subject.

I achieved remission using a combo of Chinese herbs and western meds- and to find the one formula that helped me I tried about 9000. Even now people helpfully suggest I should try giving up gluten...haha. I can deal with that. What drives me nuts now are the people that reach out to me when they hear I’m in remission and want me to sell their dicey MLM shakes or supplements, with the impression that their product helped and they can line their pockets. Absolutely not! :/

There's a part of the book It's OK That You're Not OK (really good book about grief, tho not really about chronic illness) that discusses the tendency of people to do this, and tries to shed light on why. While some people may just be jerks looking to sound smart, I think probably most friends/family are breaking out the bad advice because they want to help solve a problem for a loved one. It IS bad advice, it IS the wrong (and offensive, really) way to go about it, but it's coming from a good place. That doesn't mean we should take it, obviously, just because people mean well. Meaning well isn't enough! They should have to think about why they're trotting out advice without any thoughtfulness.

But it doesn't mean you have to educate them, either. I tend to choose my battles. My mom? My friends? We talk about this kind of stuff a lot, and I tell them upfront if they're dispensing too much/unhelpful advice. (We are all pretty open about pooping, tho.) My sister-in-law, tho? Who, after listening to me complain about how unfair it was for insurance companies to use "pre-existing condition" to get out of paying for benefits*, shouted at me, "PHASE ONE DIET! My father's brother's sister's uncle's former roommate had colon cancer and it cured it." Yeah, not even gonna bother. I will vague with her harder than anyone else.

*dating myself here, hahaha

My own mother just sent me an article on milk thistle. I have had UC for over 20 years and now she googles UC and finds a cure. I get it. I know they are trying to be helpful but so annoying

LOL about your mom! And I completely agree with your second post. I like to raise awareness also, and I'm not embarassed by my condition.

Or maybe they've adopted Western medicine practices because they work.

All I can find about qing dai is a tiny study of 9 people.

I still have my colon and I'm still alive typing to you, so yes, they have worked with varying degrees of success. Without meds (or surgery), I can't imagine how I would be alive right now. They obviously work for a lot of people, which you know if you're reading this forum. I've had UC for 13 years and I never had to go on steroids until 2013. The mesalamine drugs worked well for me for years and years. The few alternative treatments I tried in the beginning (mostly probiotics, fiber supplements, playing around with diet a little bit) did absolutely nothing except waste me money. Hence the point of this thread.

*Jen* said...
If there is some miracle herb out there I wish there would be a large study on the success.

Me too.

It's really unfortunate so many of you have such a limited view of how to care for IBD, that being through the lens of your doctors. Sara, that's great what you're doing has worked for you, or is to some extent, but it's ignorant to assume that plants and herbs and adjusting diet has little to no benefit. This is what angers me about our medical system. These crocs will get you in and out of an office in less than 10 minutes, and somehow make all of us believe a man-made drug is the temporary and end-all-discussions-fix to anything IBD related.

I'm one of those plant people. I'm one of those people who suggests alternatives because I was LIKE YOU. Desperate to and determined to not live the rest of my life relying on drugs or be fearful of not making it to a toilet and living with pain and stomach aches.

9 years ago I was diagnosed and doctors wanted me to stay on prednisone, stay on asacol, not give a crap about diet or herbs or anything else. None of that was working long-term, and I was sick and tired of being sick and tired, so I consulted some of the like-minded people of this forum along with an integrative medicine doctor (yes an MD) who specializes in auto-immune disorders.

Where he suggested continuing the hard drugs to get my body back to where it needed to be, so that I could then rely on what nature intended: Which for me, was to get rid of dairy and gluten in my diet, to use herbs like curcumin (turmeric), boswellia, and less harmful, lower dose studied drugs like low dose naltrexone to manage my symptoms. And it wasn't easy. I didn't see results for years, but I stopped experimenting with eating gluten and that's what truly stopped all of this madness for me. Yet, I took a standard celiac blood test and turns out I'm not celiac. Other blood tests showed positive markers for gluten intolerance though. So by completely eliminating it to my doctors suggested, it helped.

Fast forward 9 years later, I'm healthy, add a dose of faith & God into the mix and I'm better than I was before. I have bad days, and I do use some asacol + rowasa from time to time, which is a god send, but I would not be here if it were not for those who studied the power of manipulating diet, and adding plants/herbs to the mix.

So quite honestly, and this isn't a slap in the face, because we all know what that pain feels like, but you should be more open to alternatives. Consult with medical doctors that actually tout the benefits of diet and herbs. What in the world do you have to lose? Don't you owe it to your body? Everyone reacts differently, but you don't know until you try. I was just trying to survive nearly 10 years ago, and now I'm thriving. If you have any questions, just ask. I'm happy to point to studies that my doctor gave me.

What is really unfortunate is the phenomenon across many healing modalities which can be referred to as "I got mineism" where if something worked for someone, they automatically assume it must work for everyone, and when it doesn't work for someone else, it's because they didn't try hard enough.

I'm sorry that you apparently had bad doctors who only gave you 10 minute appointments, did not explain the workings of ibd, and wanted to keep you on prednisone long term.

A good doctor does none of those things. My appointments are 30-60 minutes and I can ask as many questions as I like. My doctor is not anti-diet or other alternatives but can only prescribe treatments that are clinically proven to be effective or sometimes allow participation in clinical trials.

Likewise there is a move away from using prednisone long term, because it is a short term solution to a long term problem.

I have been gluten and dairy free since diagnosis and it did not stop my UC progressing to the point of surgery.

I have tried all manner of alternative methods and it only resulted in me getting severe distress and ending up in therapy.

It was the most liberating feeling to finally accept that my UC does what it wants to do and it's not my fault. As long as I turn up for my hospital appointments and take my medication, I am doing what I can (and yes I also try to take care of myself re sleep stress exercise diet etc but everyone should do that, uc or not...). The only thing where I needed to be proactive was shopping around for a good ibd doctor - they are not all created equal and I had suboptimal treatment in the early years.

Re whether or not to discuss ibd with friends- it's my observation that people who think you should keep everything private are those with a spouse/partner or close family where it is safe to share things. Those who are single or without family still need to talk to people...it is impossible to manage this disease in silence. Also, why should we have to keep it a secret!? When i need to work from home or take sick leave, my boss needs to know why...and moreover to understand why, rather than just using a big word..

I have made mistakes in who I shared my diagnosis with, and some of them think I'm a shame of a human being for not being able to heal myself naturally. Honestly they can bog off. And while most people don't understand my situation, the couple that do have been invaluable.

By the way i am currently in remission thanks to western medicine. Managed to postpone surgery for a while, but if and when the day comes I will be ready. I think once people confront their fear of surgery the disease is easier to handle..

P.S. I've been vegan for 8 years. Lol. Never did a darn thing for my UC. And if you don't have Celiac Disease, it is pointless to go gluten-free. Asacol and Rowasa from time to time are a godsend...? You can't just pop an ocassional Asacol. That's not even how that med works. And no, you weren't "LIKE ME." If you were like me, you wouldn't have been able to survive for years with no meds. My flares are usually debilitating. All that being said, I hope you continue to feel well. I am not going into your alternative treatment posts and telling you to "be more open minded" and take medications. Do what you like. I don't appreciate you trying to shame me, however (i.e. "don't you owe it to your body?") I'm taking the best possible care of my body that I know how right now. That is based off science, medical advice from doctors I trust and my own personal experience of having UC for 13 years.

LOL Rosie!