I have to vent to people who understand, sorry

Ugh. My older sister is visiting from Toronto.

My older sister is a nurse and therefore she thinks she can tell me about my disease and how to reverse it.

It's very frustrating because I CAN'T reverse this disease. And just because you read it, doesn't mean it's true for everyone. Everybody has different experiences with Crohn's. Even if the specific case she read about also has a girl with an ostomy, it's just not the same. She told me that not eating wheat will change my life.

I'm sorry, but that is such crap. I'm going to continue to eat wheat as long as I want, thank you very much. Before my ostomy, I wasn't eating wheat at all, and I nearly died. I was 79 pounds. After beginning to eat wheat again I'm very healthy and happy.

Not to mention my ileostomy is not for my intestines, but rather to keep pressure off my anal area so that my anal fistula will heal.

She does this all the time, though. Comes in and thinks because she's a nurse she can tell me how to live my life. It's very frustrating to me and I want her to go back already. :|

Sorry she is being like that. I have a friend who keeps trying to get me to buy these vitamin gummies that she sells - even had someone higher up (supposedly) in the company send me an email with "information". If I could eat gummies regularly I would be on a jelly bean diet not some vitamin :)

UUgh! Good luck with the visit. She likely does mean well, but I know how it is. Good luck. Rosemary

I just realized I might have offended some nurses in my post. Not intended. Just seems to be a common theme with the nurses in my life.

One other thing -- it's pretty terrifying for people who are healthy to see how sick we are or have been. They often need to come up with a reason besides luck for why they are healthy and you aren't -- so it's because they eat x or go to y practitioner or have super duper positive thoughts every waking moment, blah, blah, blah...... clearly there are some factors that promote health, and say smoking 6 packs a day or living on coffee and donuts etc are not good for you.... but really, for most of us, bad luck, bad genes, exposure to some unnamed pollutant, who knows what made us sick, but it's just not simple..... and that means that it or some other illness could happen to THEM too......

So, wanting to help is all mixed up with wanting to reassure that they won't get sick too..... not saying this is going on for your sister, but it happens.

I heard it all too when I was sick. The worst was when people would tell me I had to stop worrying so much so I'd get better . . . like my stress level (which was normal most of the time, by the way) was the total reason my disease wouldn't leave me alone.

Regarding the foods, I had someone telling me about some alternative crap the day before my surgery. People think it is so easy to take care of this disease and that we just aren't doing it correctly.

Here's one thing I learned in 13 years, if I didn't convey it above, when stating my health condition to someone who is healthy and who has normal bowel habits (diet, etc.), less is more.

I try to keep my comments in under 3 sentences. If more, I lose them, I can see the wheels turning as I am speaking, their eyes glaze over or they have that "aha moment" - an article they read or remembering something Aunt Bessie tried. Happens everytime.

I did this one time with a close friend of ours, after not eating dinner while socializing at a marina (yes I want to use a marine toilet 4-6 times in the next hour), while listening to live music. He finally understood - so no input, no output! I said - bingo! Finally, he got it!

My husband is a nurse too and he's always telling me exactly what's causing this and that, and he doesn't always know, and I just saw, yeah cause you are walking around pooping in a bag, so you know more about it than I do. That usually shuts him up :)
Good luck wth your visit!

Sarah, that "what exactly is in the bag" comment is hilarious!

What's in the bag - agree, that has to be one of the funniest, most naive questions.

What would have been neat is if you were wearing the clear, see through bags at the time (the ones you wear while in the hospital). Now that tells the whole story!

Even though my ostomy was reversed long, long ago if people ask me what it was like I ask them - have you ever changed a newborn baby's diapers? If they have, you get that grimace and an "ewwww" usually. I chuckle and say - well, it's like that, but in a bag, not a diaper.

Post Edited (Marsky) : 3/9/2012 6:35:39 AM (GMT-7)

I have a friend who has a great heart and is very much in support of me. BUT all she does is worry about her blood pressure, but then she says when she has it taken that it is "text book normal." Then she keeps repeating the phrase "I'm aging normally." ONLY BECAUSE I have known her for so long and that like all of us she has some issues, can I let this slide. Coming from anyone else I would just totally avoid them. However, sometimes, It just sort of gets to me. So when she says "I'm aging normally." I say with a chirp, "I'm not."

Most of my friends are as supportive as they are intellectually able to be. BUT the one thing that they really have a hard time grasping is the fact that as an ileostomate we are prone to dehydration, especially in hot climates, like the time I had to get 2 IV's in the Caribbean. I can only say,"The colon is the organ that absorbs water back into our bodies to keep us hydrated." Due to my initial injury, I do not have the use of my colon, hence I do not reabsorb as much water back into my body as you do.

TO ME THIS IS NOT NUCLEAR PHYSICS.......but sooooo many of my intact friends just don't get it. How can you not get it? ileostomates put out liquid stool as it does not go through the colon. Intact people put out much more solid stool because their colon has absorbed the water out of it. It's like DUH!

I also love the people who are into pushing Fish Oil. RIGHT like that would make me have such diarrhea! I would float away on an oil slick!

Then there is the "You don't eat much roughage." Yeah, I know! I really don't want stomal food blockage.

I'm writing a Jay Leno Monologue for ileostomates here, can you tell? LOL! But I totally hear you all.

One thing every feels bad for me about is having to still pass colon mucous out of my rectum. They all get the damage and the original surgery that was not needed on review, that lead to all of this. And I'm not really looking for total comprehension, but the having to pass mucous is the thing that is totally understood by all in my neck of the woods. They are all like this is the last straw. I think to myself not like an attack of active diversion colitis or an adhesion reobstruction, but I let them be sympathetic, we all need that at times. This is really a lot to wrap one's head around. Back when I was all intact with normal digestion, I may not have understood it either.

Rosemary