Tired of people telling me what to do!

[MeghanL]

Hey all,
I really need to vent because I am going crazy! I started flaring up bad last week and right away went on prednisone and started Imuran. It took the pred about a week to start working but I'm feeling like I'm finally getting better and almost back to feeling 100%.

Anyways, because I was so sick last week I had to take a few days off work, which led to my coworkers and supervisors being really concerned about me but they started to take it overboard. When I did come in to work I was bombarded with their opinions on what I should be eating or supplements I should be taking, which is so annoying because it's like do they not think I do any of my own research of my OWN disease?? And even now that i'm feeling better and completely capable of working, they still say to me "You shouldn't come into work tomorrow, you need rest, that's our opinion." Well okay maybe if they are planning to pay me to sit at home, watch tv and feel completely fine, sure then I'd stay home. But as a student, summer is my time to make money.

Lastly, my best friend's mom is making me ready to pull my hair out. At first her text messages to me were out of concern, wondering how I'm doing, but now they have just turned into rude messages, telling me what to do. For instance, she won't leave me alone about going to a herbal medicine place. My thoughts on this is that I can't afford to be spending a ton of money on herbs that have no scientific evidence for helping with crohns, it's just a money grab. Besides, I'm on medication that is proven to work and IS working for me! I have told her over and over that I'm feeling much better but she won't listen and still keeps insisting I go to this herbal medicine store she likes, it's really getting on my nerves because I don't want to be rude to her and flat out say no.

Okay there's my little rant on people telling me what I should be doing for my crohn's, any similar experiences?? Thanks for listening

 

[Thermo]

I know it gets annoying but everyone is trying to help you, its just in today's age everyone doesn't realize how they come across to someone. So it may sound like they are on a soap box or preaching to you but in most cases they are genuinely concerned about you and want to offer any help that they have heard in hopes it could help you somehow. Believe me I am not taking anything away from your rant lol I get annoyed at this very same thing!

 

[samtheman786]

I know exactlly how you feel, my parents and grandparents are always doing this to me. I know what my body responds to no them but they still wont listen. epecially myy parents they read something about crohns on google and it some how makes them an expert not the docotor who has several years of training. So yeah I have the same problem and its fucking annoying!! FYI im 23 years old now and was diagnosed when I was 16 so I have plenty of years of experiance

 

[Patricia56]

You have my complete sympathy. When my son was first diagnosed I actually had my son's teacher and our minister at church accuse us of child abuse because we put him on tube feeding to treat his Crohn's. Talk about people telling you what to do.

Oh and they wanted us to take him to someone who worked with "energy fields" and homeopathy instead of giving him prednisone when the EN didn't get him into remission. I was floored. I'm like - hello, he has bleeding ulcers, his ped GI says they could perforate at any time. NO I am not taking him to get his energy fields fixed. (Hope I didn't just offend a bunch of people but really, he was having bloody stools with clots!)

Hang in there - you are doing a great job taking care of yourself.Pat yourself on the back for me.



I'm not sure you want advice about how to handle these well-meaning but irritating folks. If you don't (I do not want to be just one more person telling you what to do!) then skip the rest of this message!

If you are ignoring the text messages/not replying that is probably only making it worse because people who are older than you will see that as passive aggressive and just get aggravated.

unfortunately, I don't think anything you can say will probably make people stop and if you tell them things like you don't have money to spend on herbs well you may find out they are willing to buy the darn things for you. And then what will you say?

So mostly you have to act gracious and say things like "How kind of you to think of me." and "I'll have to try that sometime." When they tell you all about something they looked up online "You must have spent a lot of time on that." All you have to do is acknowledge that they mean you well.

As for the "you should stay home" crowd, the best reply to that, in my experience, is to say that you are following your doctor's advice and returning to work. Besides it keeps your mind off your troubles. Both of which are true and both of which other people cannot really argue with.

For people like your best friend's mother - I assume you are actually kind of close to her - you might quietly say something like "I know you really care about me. I know I can count on you when I need you, that you are in my corner. But I feel uncomfortable when you bring up taking herbs to treat my Crohn's. I am following my doctor's orders and doing what he/she says is best for me. Its working and I'm so much better. So for now I'm going to stick with that OK?"

 

[nancerini]

I can totally relate to this, people do this to me all the time. I've been told that someone knows of someone who went on this diet where they just eat beans and they are in remission. Seriously? This diet would make me sick as h3ll! I'm currently in a flare right now, the Humira isn't working, the prednisone isn't working and now I started taking azathioprene and weaning off the prednisone. I've had several people tell me to take this supplement, or go on an all organic diet, etc. etc. One actually practically arguing with me when I told him my doc said NOT to take chia seed because of all the obstructions I keep having. It gets so irritating I just try to change the subject and usually say, yeah, yeah, I'll look into that but sometimes I don't if I find the advice ridiculous.

 

[JoanneH]

I like to play the innocent. "Oh, no. You think my GI specialist is wrong?" "Uh-oh, you think this drug that has me in remission is bad for me?" "Oh, you mean those things I already tried and that failed, I should go through again?" "That natural medicine clinic I went to, where I felt that I knew more anatomy than the doc, the one that makes $$ off of supplements, you mean I should go back there?"
This tends to shut people up. My sympathies! I hate that nagging, too.

 

[michaelearnest]

I hate nagging people. I do want to ask you since you said you went on Imuran last week, are they doing frequent blood tests on you? When they put me on Imuran, I was on twice a week, once a week, once every two weeks, once a month, and now on every 3 months blood test

 

[Cat-a-Tonic]

I can so relate to this. When I first became ill, my doctor didn't know what was wrong with me but he mentioned that it could be something like Crohn's or Celiac disease. I made the mistake of telling my mother that. Well, my mother called some distant cousin of hers one day, and this cousin told her that she has celiac so therefore I probably do too since it's in the family tree. My mom freaked out and decided then and there that I must have celiac, and if I have it then I must have gotten it from somewhere, so she further reasoned that she must have given it to me so she must have it too. So she immediately went gluten-free and started harping on me to do the same. Never mind the fact that my mother had no symptoms whatsoever! And when I underwent testing (both the blood test and the upper endoscopy w/ biopsies), it all came back negative for celiac. Plus, breads and pastas are some of my safest foods, so I never really suspected celiac to begin with. But my mother has become a warrior against gluten in spite of all this actual evidence that I don't have celiac. She's never been through any testing for it, by the way, but she tells people she has celiac disease. She got a couple of my cousins and my aunt on board with gluten-free too, so now I feel like it's the whole family against me and they all want me to go gluten-free (NONE of them have been through any testing for celiac either). Urgh! I've explained till I'm blue in the face that my diet is already limited and I've been through testing and it was negative and also gluten doesn't bother me so no, I won't stop eating it. I feel like all this gluten-free stuff is a fad and my family is driving me crazy with it. I hope they come to their senses soon! It's lonely enough being the only person with IBD in my family, but it adds an extra dimension of alienation when everyone on my mom's side insists that I must have celiac.

 

[Scaryman]

When I was diagnosed in 2003 and looking forward, I didn't have anyone to bother me asi was and still am on my own. I have $97k medical debit and cannot file for SSI, I owe them for a previous issue and made some horrible mistakes 21 years ago. Now I've screwed myself with no insurance, three strictures that won't get better.

So to Have people nagging you is irritating I can see that. But man I wish I had that so I can throw it back, "wanna help? Here let me email you these medical bills." that would send them on their way.

 

[MeghanL]

Thanks for all the replies! It's comforting knowing that I'm not the only one frustrated with this. I just get annoyed because I know what's good for my body and I've done at least 20 times the research on my condition as the people who quickly googled it and think they are experts in what I should eat or do. But all that being said, I know people are just trying to be helpful and feel like they are doing something for me because they probably just don't know what to say that would comfort me. Just gotta keep reminding myself of that! I know they are only looking out for me

However, now that most of my symptoms are gone - no more pain, less blood and much less frequent D, I feel very judged at work during lunch when I eat anything besides rice, apple sauce, yogurt, all the food that my coworkers think I should be living on - flare or no flare. I don't know how to explain to them that when I'm not flaring, I am able to eat most foods with no problems, they don't seem to understand that and say I should still be watching what I eat and being more careful. I don't think it was a particular food that caused my recent flare up anyways. I don't believe I was on the right medication...I was just taking Asacol and later Pentasa, which I don't think was strong enough for my case of Crohn's.

To answer your question Michael, my doctor told me to get blood work done every week for the first month to check my white blood cell count, then twice a month for two months, then once a month for 4 months. I'm on 50mg a day right now and switch to 75mg tomorrow, and so far no issues from it!

Anyways thanks again for listening to me vent and sharing your own experiences, it's greatly appreciated

 

[Thermo]

I have found a great way to get past all of those judgmental looks, I just say screw you I'm going to live my life how I see fit. Just remember that everything that is a big gossip topic right now nobody remembers in a week.