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

This week alone, I've been told by two different acquaintances/friends to take elderberry syrup, Chinese herbs and turmeric to cure my UC. :/ I never asked these people for advice. It seems that whenever you mention you have UC, even if I say I'm doing well or was in remission on Remicade, people butt in telling you not to take actual medications proven to work and tell you to take some BS herb. This friend today "enlightened" me that most doctors just treat the symptoms and not the cause. I would like to know what that retort even means and how she knows that her precious herbs don't do the same thing (maybe because they don't even fix the symptoms...or the fact that we can't treat the cause since we do not know what causes UC?!) Anyway, I wanted to apologize if anyone felt the way I feel right now when I posted that plant-based studies post this summer. I only posted that to share some research I found interesting. I personally would not have the patience or strength to try that while in a bad flare unless nothing else was working and I was totally desperate, just as I would not try any Chinese herbs (even though there is a lot more research I've found on PBD than herbs, but still I want something that is actually proven to work and work fairly fast!). This friend went on to tell me that in Japan and China, people's IBD is treated with acupuncture and traditional herbs. I know they use biologics in Japan because in one of those plant-based studies I posted, they treated the patients with starter doses of Remicade. I don't think she knows what she's talking about at all. It comes off as really condescending when people try to tell you how to treat a disease they don't have and know almost nothing about and that you've lived with for 12.5 years and know quite a bit about. I know they mean well, but it really irritates me. I wouldn't butt in and tell a cancer patient what treatment she should be taking.

The chick who told me to take elderberry syrup said she had another friend with an "autoimmune issue" who takes it. Well, if the syrup supposedly boosts your immune system, then that would be the opposite of what we'd want to do, right? She gave me this advice after I told her I was doing well on Remicade. She is one of those people who goes around saying "plants heal" (she literally said that out loud the first time I met her), and I think she believes marijuana cures everything. :/

Just wanted to vent, thanks.

Yea, been there. Sometimes it felt like everyone I ever told about my UC spent some amount of time trying to convince me that eating/taking/doing something would be the key to success.

The truth is that our disease horrifies people. It's a very human reaction for people to believe they can control something like this. With control, they can make sure it never happens to them. The inverse of that coin is that you did something to bring the disease on yourself. They don't actually mean to say that but what they believe is a self defense mechanism and it comes paired with the subtext. It's human. It's tragic.

Understand that they are really trying to help, in whatever way they can. I used to try and educate and help them understand, but I finally started to see that in doing so I was rebutting them with "You may get this disease yourself one day and there isn't a single herb or Eastern medicine remedy that will save you. Gwyneth Paltrow and her goop be darned." I eventually got to the point where I would thank them fully for the advice and act very interested.

The best part about the disease is that sometimes, some people don't react this way. They listen. They are interested. They actually support. They were not the ones I thought they would be, but some people separate themselves from the herd on this. I have several friends now who I understand and trust because of how they reacted. Best friend filter ever.

I agree with Andy. I think most mean well and are acting out of concern for you — and horror, if they understand the details of our disease. Others are just ignorant and so confident in their woo-hoo “knowledge” that you’ll never change their mindset that you’re doing it all wrong. Sounds like your friends fall into the latter category Sara

When I was first diagnosed, a friend/acquaintance begged me to try cbd oil because a friend of theirs had the same thing blah blah blah.

My oldest and dearest friend educated herself and never offers advice but never fails to ask how I’m doing. Although I’m now in remission and like to try to forget I have UC the fear of a flare returning never goes away but lurks at the back of my mind and pounces out all the time.

"Normies" -- haha, I love that! If only gummy worms really were the cure...that would be pretty awesome.

Andy -- Yep! Good insight. I think that's part of why it bothers me because it is kind of like they are blaming us for getting this disease.

quincy -- Exactly! I love that. If Chinese herbs were a cure, then no one would have ulcerative colitis. I do not believe her that that's used successfully as a cure in China! I don't know if all these people are just conspiracy theorists who truly believe modern medicine practitioners are purposefully trying to keep us sick or what.

FlowersGal -- Yeah, the best is when a friend or family member actually cares enough to look up your disease and do some real research on it, or simply ask how you're doing and if there's anything they can do to help.

straydog -- Yeah, true. Not sure why I let it bother me anymore. Thanks!

Sara

As to your friend who thinks marijuana clears everything up, I can personally attest to the contrary. I live in Colorado and a few years ago... well, we voted on a few things. I had never smoked weed before but I was in the midst of the four back horrible flare that had me begging God to either kill me or ease up a bit. He did neither, a friend (ok, a pothead friend) suggested that marijuana helps frekkin everything and I figured I really didn't have a lot to lose.

Weed was fun. I had to hold onto my bed to keep from falling off the first night because turns out you aren't supposed to smoke joints like cigarettes. It didn't work. The holding onto the bed or the weed for the UC.

Neither did Jack Daniels, high protein diets, low protein diets, celiac diets, keto diets, liquid diets and then some more Jack Daniels. Jim Beam also failed. Coke, coffee, vegetarian, vegan, chicken only, soup only, bread only. Threw some more weed in there to make sure. Nope. Still didn't do it. Exercise. No exercise. Aquatic only exercise. Cardio only exercise. I drew the line at eastern medicine because people who tend to go after stuff like that drive Subarus and talk about "sustainability" and I just couldn't cross that bridge. But hey, more power to um.

It's probably taboo to discuss (assuming talking about weed above doesn't get me banned) but smoking cigarettes helped. For me, it was a light switch on the bleeding. It didn't make the UC flares go away but it would pick me up, stop the bleeding and let me get up and going for a day. I eventually settled on smoking 4-5 a day to try and manage symptoms and it worked. For me. But smoking is horrible and will kill you a thousand different ways and no one should ever advocate for it. I happily quit once my surgery was scheduled and haven't looked back.

My primary care doctor told me "you'll grow out of it."

journey2health said...
My primary care doctor told me "you'll grow out of it."

OMG. No way! I sincerely hope they aren't your doctor anymore.

Serenity Now -- Yep! Exactly!!

I am always vague, and don't give any details, that way they don't know what to suggest. I hate to say that, because I know it's bad to keep things bottled up, but when you tell people too much, it opens the door for suggestions.

iPoop said...
This disease would be okay if it wasn't for the constant pain, pooping, and fatigue.

I laugh everytime I read this.

I must confess, that sort of thing used to bother me so much, I took to sarcasm with lines such as...
"Sure, my uncle's cancer went into remission the moment he stopped sending unsolicited d**k pics on Twitter!"

Just don't tell people or talk about it. Not to sound negative, but people don't really care. They just want to sound smart or find a way to circle back to their own problems. Human nature.

I never used to care either. Friend of mine had Crohn's and I didn't really get it or think it was a big deal. Nobody wants to hear about someone else's problems. They will offer a quick suggestion as a way to try to be helpful and hope you move onto another subject.

I'd agree with Uniformed Charlie, sure it's a bit visceral/shocking yet true to my own life's experiences of interacting with others (more specifically those who aren't immediate family/friends/SOs). My parents and wifey do truly get it, as they've seen me in pain and how it affects me. Coworkers, people I know less well, etc are the real issue, who half-understand it and come up with the idiotic-cure suggestions. It's a 100% invisible illness and harder to explain to others (but you don't look sick >_>). I keep my UC close to my vest, and mention it to only people who are super close to me. Others are on a as-need-to-know basis with a less clarity on why. For example, they request to meet at 8:00am. I'd say Oh i'm not an early morning person at all and getting my lazy-butt out of bed is a total chore, but can be there a bit later on, say at 10:00am or something? Would that work for you?

Oh wow, yeah, those are some very ignorant and insensitive comments you've received so I can see where you're coming from. People are often disappointing. I know my cat cares when I'm sick at least! She can't talk but she's always there checking on me and sitting with me (and she doesn't make stupid comments...).