HealingWell
Search Close Search
☰

"Helpful people"

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/22/2012 4:35 AM (GMT 0)
Have you ever noticed how many people know someone who had ulcerative colitis and are now "cured" by one thing or another? Recently, my MIL said my UC is caused by not eating grains. A neighbor made an appointment for me with a chiropractor who supposedly cured his disease, and now another neighbor has an business associate sending some kind of mushroom supplement that cured her. The same neighbor has already bought me a bag of flax seeds which cured another person she knows.

I have been on 6 MP for about five weeks now after trying numerous diet modifications over the past two years. I'm really not interested in taking mushrooms at the moment.

Another friend of mine has insisted I take Good Belly probiotic which will solve my problems. I always feel like people think I am not trying hard enough to help myself. I just feel like screaming, "one thing at a time, people!"
Posted 10/22/2012 5:22 AM (GMT 0)
I'm so sorry to read the last part of your siggy, about your Mom passing.

I know exactly how you feel! Even on this forum, where everyone comes with the best intentions, I've seen some posts that got a little preachy.

I find that some of us especially just want to tell our story, to get it off our chest and be heard. Not so that someone will "fix" us (other than our doctor).

I had the same issue with my SIL, except my problem was that "I didn't have enough faith".

Once I found the right path for me, with the right doctor and meds, I just had to start being firm but nice, and let everyone know I was happy with the treatment choices I had made (all the while reminding myself that they mostly had good intentions. Mostly).

I hope you find what works for you. All the best!
Posted 10/22/2012 5:28 AM (GMT 0)
People always come up with ridiculous things that "cure" UC. Most of these same people don't even know what UC is. Some are confusing colitis and UC. My dog had a bought of colitis and that is curable with antibiotics or sometimes just passes with time. This woman at work told me to drink rice bran. She said she was "developing ulcerative colitis" and she was able to stop the progression with these drinks.
Posted 10/22/2012 10:02 AM (GMT 0)
I also think as much as people try to be helpful, its gets too much. It definitely feels like others (who have no idea, unless they also have UC) have all this advice, because we don't know how to look after ourselves. It must be because we eat or drink something that is no good or is it beacuse we don't eat something that we sholud be.

I feel like screaming sometimes, but no one hears me.....except for you all on the forum. I have tried to explain to these so called helpers, that every case is different and just because one thing helps one person, the same thing could hurt someone else. Our disease is not casebook...ie you get UC and need to take ABC and 123 and you will be fine. It is not appendicitis!!!!
Posted 10/22/2012 11:56 AM (GMT 0)
Thanks for the stories, guys! I love hearing what other people have been told.

Guategirl - lol! That's funny about your SIL!

Notsosickly - yes, my MIL calls it "colitis" and one of her sisters has colitis. I don't think she really has any idea what it is or cares to research it.

Jovana - I agree no one really understands this disease unless they have it themselves!
Posted 10/22/2012 12:37 PM (GMT 0)
I had a gathering of friends the other night. One person was telling me that he thinks he has colitis. I asked if he went for a colonoscopy to which he replied: not yet. I told him he needs to have one in order to determine exactly what is going on. Another person said: No, you don't need a colonoscopy, you get colitis from food. I then said to her: no, colitis is a disease you get from stress (at least for me it was); food being a trigger. She then said I did not know what I was talking about.
Posted 10/22/2012 12:44 PM (GMT 0)
I love the help in the forums and you guys have helped me a lot already.

But sometimes those people who "know it better" or just "trying to help" are annoying. Even my GI is (keyword LDN) rolleyes

Don't get me wrong I'm desperate and willing to try new stuff. Hopefully I stumble upon something which actually helps. It's a two egded sword lol

I made this thread a while ago: stupid things others tell us

Post Edited (Andrina) : 10/22/2012 7:03:01 AM (GMT-6)

Posted 10/22/2012 1:11 PM (GMT 0)
Oh I've had some doozies over the years! And I know what it feels like when you have more than one person offering advice, suggestions or help. Even on here it happens, I ask a question and I get 20 different answers lol (but I don't mind really).

I too think people are just trying to help and for my family members who say they only do that is because they love me, so I have to pretty much to tell them, Love me less.
Posted 10/22/2012 3:11 PM (GMT 0)
I think most of the time folks don't know exactly what UC is, and end up recommending general digestive aids, and also they feel some need to "help" so they quickly offer smething without much thought or education on the matter. I call it help-lite, because it requires so little thought or effort.
Posted 10/22/2012 4:24 PM (GMT 0)
I haven't had too much "help" from others. The suggestions usually get turned into questions by me...that they can't answer. Hmmm.
q
Posted 10/22/2012 4:48 PM (GMT 0)
I was just diagnosed...and my aunt keeps telling me to take a Motrin and some Imodium for the chronic D that has been killing me, and the low grade fever (already have a call in to my GI for that one!)

I'm on Asacol/mesalamine enema, so I said "no, I can't take NSAIDs or asprin and Immodium case cause major problems. I have to call my GI."

I've also been told it is my fault because of my diet, or whatever. I'm a pretty fit athlete (well, I was, until my first flare ever!) and I didn't do this to myself!
Posted 10/22/2012 4:53 PM (GMT 0)
Thankfully, I haven't came across any of those people. my grandmother is like that though, so I just never told her. She always has every disease everyone else has, but hers is much worse, so we tend to just not tell her things lol.
Posted 10/22/2012 5:22 PM (GMT 0)
LOL I was tallking to one of my sisters that lives out of province and she was telling me how she had heard there was a new drug for IBD called Humira...I giggled and told her it wasn't new anymore, it's been around for a bit....

I think people are more likely trying to be helpful, even if it doesn't always come across that way. I also know people will use the term colitis rather than saying ulcerative colitis because even many people that have IBD themselves don't realize there are different forms of colitis like crohn's colitis for example...so many people that are told by their docs that they have crohn's colitis makes the patient think they actually have both crohn's and colitis *UC* when in fact they still just have crohn's that happens to be affecting their colon.
Posted 10/22/2012 5:30 PM (GMT 0)
My DH saw a scientific article online about "gluten-free" and sent me the link. It changed my life. Not every helpful suggestion should be ignored.

I hate people telling me what to do and can be pretty rude. Not to him because he's always looking out for me and knows better than to tell me anything.

I agree pb4 that IBD people can be just as uninformed as anyone else. One of the rudest people I've met in person was someone with a colectomy.
Posted 10/22/2012 5:58 PM (GMT 0)
I have a friend who thinks she knows what she is talking about as far as uc goes and it drives me crazy because she doesn't know at all. One day I was talking about prednisone and that I was worried about tapering and she's like "well you're planning to stay on that forever right so you'll be fine" I was like *** is wrong with you lol
Posted 10/22/2012 6:54 PM (GMT 0)
All i have to say is that if those cures worked, this forum wouldnt exist lol
Posted 10/22/2012 11:14 PM (GMT 0)

ChrissySoul said...
I have a friend who thinks she knows what she is talking about as far as uc goes and it drives me crazy because she doesn't know at all. One day I was talking about prednisone and that I was worried about tapering and she's like "well you're planning to stay on that forever right so you'll be fine" I was like *** is wrong with you lol


omg lol

Yea you could stay on it forever if you want bad bones, bad muscles etc... not to mention the other side effects like moon face, acne, mood swings... have fun with that smilewinkgrin

meyerlemony said...
I was just diagnosed...and my aunt keeps telling me to take a Motrin and some Imodium for the chronic D that has been killing me, and the low grade fever (already have a call in to my GI for that one!)

I'm on Asacol/mesalamine enema, so I said "no, I can't take NSAIDs or asprin and Immodium case cause major problems. I have to call my GI."

I've also been told it is my fault because of my diet, or whatever. I'm a pretty fit athlete (well, I was, until my first flare ever!) and I didn't do this to myself!


I'm sorry to hear that you just got diagnosed. It is really not your fault. I believe there is genetic link and we all have the bad genes in us our whole life and it decides to break out some time. I hope you get your flare under control soon.

dontscopeme said...
All i have to say is that if those cures worked, this forum wouldnt exist lol


so true

Post Edited (Andrina) : 10/22/2012 5:18:02 PM (GMT-6)

Posted 10/23/2012 1:02 AM (GMT 0)
Holy cow that's alot of "advice"!

I noticed that people kept asking me if I knew what was wrong with me yet. I would tell them I had UC, give a short explanation, etc. But it's just so weird to people that medical professionals don't know what causes it and that you can't "cure" it.
✚ New Topic ✚ Reply