Frustrated with friends and family's advice

[Txgirl]

This is just a vent of sorts! But wondering if anyone else gets tired of this?

I'm tired of hearing friends and family telling me that my diet is the cause for my diarrhea !! :ymad:

Am I wrong in thinking that it's not ALL diet related and that it's more the crohns??

I have yet had a GI or surgeon tell me to watch my diet or my diet is the cause of my bowel issues!!

But my family doesn't seem to get it!!

 

[xX_LittleMissValentine_Xx]

Yeah its very common that people think these sorts of things, and will give all kind of advice.
I think that diet can play a role in exasperating symptoms, and you can to a certain extent have some control with diet. But it will never be a cure, you could follow every piece of dietary advice and still flair. And everyone is different so some things that work really well for some people will not work for others.

 

[GeminiTwin]

FWIW, I respectfully disagree that your bathroom habits need to be discussed with your family anyway, esp. given the fact that they seem to want to remain in denial regarding your illness. Yes, certain food choices can lead to SOME ppl having more diarrhea. But your food choices are your own. If you knowlingly eat something (big ole salad, for me) that may cause issues later, THAT'S ON ME! None ya biz!

 

[sawdust]

Ah yes, my favorite. I used to get this all the time in my family, and I really do believe that it comes from a good place, but lacks understanding. I get genuine advice from people regarding what works for them when they have a tummy ache, a bit of diarrhea, those "real bad" cramps, or bloating "you wouldn't believe."

It used to really hurt my feelings to think that these people thought I was that much of a wimp, but I realized two things: they are trying to help me based on what works for them, and that is a real bad day in their lives. Between me understanding that, getting less upset by the comments, and them seeing things that they can't relate to, like surgeries, blood, and other "fun," they get it. :hug:

Try not to let it bother you, if you can. And if it does, just come here. We understand! "This one time, I ate like 3 tacos..."

 

[Crohnsnewbie]

Yeah a lot of people act like its only the food that causes Crohns and that's not even what causes it! People say oh well you'll get better soon, and I'm like I've been sick for 12 months! When will people realize your always sick with this one way or another????? :/

 

[Sybil Vane]

Maybe you could send them some medical journal articles that talk about Crohn's? Or even something from the CCFA so they can understand that it's not a matter or diet? There are some people who have really good results from modifying their diet to a gluten-free one, and then there are others (like me) who have tried but have not been successful. We all have our flare foods (for me it's Italian style tomato sauce all the way), but just avoiding those foods really isn't the ticket to healing for a lot of us (like you know).

I've found that if I patiently say, "Thank you for the tip, but unfortunately, Crohn's is an autoimmune disease. I wish I could give up X, Y, and Z and be cured, but it's not how this disease functions." Then, they ultimately drop it and understand.

 

[Txgirl]

I've tried telling them that it's not the food I eat! But they don't seem to get it! Even my other who has been with me at all my doctor appts, and through my surgeries etc! Like today I was talking to her and she asked how my gut was doing and I told her I had a rough night up all night with D! She then asked well what did you eat?!? Ugh , I have D daily, and more so after my bowel resection! I got mad and fussed at her that I have it daily and it's nothing new for me! It's not what I'm eating that is doing this, it doesn't matter what I eat I have D! And she goes on to say well haven't you read some on the Internet about crohns and the diets and food yadda yadda, I tuned her out and just said YES, I've read a lot !

I have a close friend that always says I need to figure out my trigger food for my D! I'm like it's kinda hard to do when I sit down and have two to three different things on my plate! Was it the mashed potatoes, or the butter, or the steak or the steak sauce?? Kinda hard to figure out!

And maybe I'm just being stubborn about finding my triggers, but damnit I suffer enough with this DD, I just don't want to cut out the food I enjoy!

It causes me no pain just D! And who is to say if it is the food or just the crohns itself like some have said!!

Have another question my friend says to me and I don't know if it's true or not, but she say when you have D that causes inflammation in the intestines?! I thought it was the other way around the inflammation causes D! But she claims having D is bad for your intestines? Any thoughts??

I don't know but I just had it today! Lol thanks for letting me vent to y'all who understand!

 

[Shirl]

I get this too. I was recently admitted to hospital because the pain was unbearable, especially when I ate. I also was extremely bloated. After the x-ray came back it was very clear I was constipated, even though I was going to the toilet regualrly. Afterwards during a visit to the in-laws (mum, dad, sister and darling hubby) who I love dearly and I know they love me too. They were asking how I was etc. I explained to them what happened and the fact that I can't eat much because I get too bloated. I had a full hour of things like; oh you should eat, try this try that, the things you are eating are wrong. Like I was doing this to myself!! I tried to explain it doesn't matter what I eat, it's my body!!! I have a narrowing and the food is having difficulty getting through, so it backs up!! I eat fresh veg, drink lots of fruit juice etc to try and keep things looser, but of course I was in a room with 4 experts who no matter how well meaning they were and how much they love me have absolutely no idea how I feel. When I went home I cried for a full hour and it made me feel like I didn't want to visit them again. I will go again and I'm sure if that happens again hubby will stop them because he saw how upset I was

 

[Sybil Vane]

I read that a member had her significant other read the forum. After he read the forum, he began to understand what Crohn's sufferers go through. Maybe that would help. Just venting helps, too, and we're all here to listen!

 

[tlc-x]

My teachers at college get annoyed with me for being off college so much and just "chilling" at home instead. They told me that I do not need any scans or scopes, I just need to change my diet. My diet is what is causing all of this nothing else and I need to sort it out and get back to college.

I have change my diet - I can't eat onion or garlic because they set flares off really badly. I took them out of my diet but extended family (aunts on my mums side) say I can eat onion and garlic because you can't be intolerant to them and i'm just being fussy.

My grandparents (on mums side) say it's just in my head and to get the pain and all the rest to go away then I need to go to college and get out more and forget about it and it'll go away.

My other grandad (dads side) has crohns so he completely understands but says nothing because he doesn't want to say he understands what i'm going through because he hates being told that and he doesn't want to say the wrong thing because he knows every person is different. He just says he hopes I feel a bit better tomorrow.

My brother doesn't live with me and doesn't quite understand it so just tries to ignore it all himself as to not upset me or come across rude.

My sister forces me to go places with her but is open minded about it.

My parents just let me do what I need to do and when and help and are understanding etc.

My dads side of the family almost all have crohns or colitus so they know what it's like.

Venting is good We understand you here!