dealing with unsupportive family...

Stop expecting them to support you; that's my advice.

When I made the decision to have surgery my brother and mother were opposed. They tried to talk me out of it. The only person who supported me was my eldest brother. My mother never visited me at the hospital; our relationship was always strained so no big surprise there. After my surgery the nay brother saw how much better I looked and apologized.

I had friends that also did not support my decision for surgery. I gave those friends up; how dare they?
Stand firm and be confident in your decision.

Sue

I have a similar issues...but it started and blew up when I was diagnosed with UC in 2010. My sister said things like "My college roommate's husband had UC. He lost his colon because he like his rich foods and corn chips." this was complete ignorance and I tried to explain to her that it's not the food but your immune system and also this accusation places blame on someone who in reality has no control over the disease. Well...she completely stopped talking to me. In fact, my mom defends her by asking if I was "picking on her". Gee...I'm 40+ years old...not 6!

Well things got worst when my mother couldn't understand why I could make it to my dad's funeral in Feb 2011. They live 3 hours away. It was horrible wet cold weather and on top of it I had the flu! The doctor gave me director orders to stay home as I could wind up with pneumonia and be in the hospital with complication considering my immune system was all screwed up to begin with. A week later I got out to meet with my mother to go to the graveyard. On the front lawn she tore me apart stating "I should have been there. No matter how sick I was...even if I had to be placed in the wheelchair!" I completely lost it emotionally....and eventually lost my colon too!

This was a severe situation and I had to work on emotionally detaching from these people for good. We haven't spoke since.

I say the best thing is to try and get to the bottom of the issue before it blows up in your face. If they keep deviating then try a group counselor. This is the only way I would have a conversation with my mom again...at a counselor's office to mediate the conversation. Just remember you can't change them. They have to meet you half way if they value you.

Good luck!

I know it's hard to basically ignore some of your family members thoughts and opinions, but that really is what you'll have to do here. They do not and could not ever truly understand what you have been going through. Of course they are concerned for you, but if they are not able to support YOUR choice without causing you added stress and worry, you really have to do your best to not concern yourself with them for now. The most important thing, by far, is making the right choice for YOU and getting a good, healthy quality of life back!

Most of my family and friends were pretty supportive of my choice to have surgery....though very few could understand why I opted for the end ileostomy instead of the J Pouch. I would explain it to them the best I could, but in the end, didn't really sweat it if they still didn't "get it". The very few people who are closest to me were there for me...NO matter what. Having a chronic illness, and dealing with the choices we have, can be very isolating....but at least we have each other here!

Good luck with everything!

thanks everyone. I did take my Mom along to a surgery consult years back, but neither her nor my sister have any idea of what my day to day life is like, what/how many meds I've been on, etc. I don't "expect" support from my Mom, I never have- I just don't know how to respond to  the comments. My sister, well... I would expect a little more support, but... I guess I'm hyper sensitive right now anyways, & the ignorance boggles me. Having a child of my own, if she were to become ill with something like UC, I'd make it my business to find out as much as possible about it. I suppose my families lack of interest/concern upsets me. Which it shouldn't, I realize this... easier said than done, though!

This must be so difficult for you, this is your immediate family.

My parents were already deceased when I had my colectomy. I just have a sister and friends. My other family members are distant. Leading up to the colectomy, everyone was medically unaware as to the seriousness. I wanted my whole colon out, instead of a resection. I had hundreds of diverticula throughout. This lead to statements of "this is an old person's disease...what are YOU doing in your life to have gotten to this point?" Only person that was the biggest thorn in my side was my ex mother-in-law, whom after I was hospitalized for a diverticulitis flare, stated that I had to find another 'babysitter' and that I was a liar stating I became ill and hospitalized (6days) for attention. She still makes stupid comments, of which I stand up for myself now. I ended up with my ileostomy post-op due to complications.

Since surgery, it's been a battle. My sister opposed to me keeping my ileostomy, making immature statements, but has since turned around. Lost some friends as well, taking my courage for weakness.

The entire ordeal, has really brought me to a more grounded place. It's my body and my decision's. I suffered enough.

Also, just saw a recent episode of "The Doctor's" show. It was a pooping, peeing segment. On there, they had a now middle aged women, who had a protocolectomy for Crohn's back in the 80's when she was 18 years old. They showed a video of how a protocolectomy is performed, and an actual stoma with the appliance around it. This brave women also showed her own appliance. She talked about what a wonderful quality of life she has, showing pictures of her travels. She was asked if it was necessary and where her life would be if she hadn't. She discussed the social mindset of others, and all that she could do with her ostomy....even stating that she's been married 2x! One doctor applauded her bravery lifting the stigma of this issue, as did I. She spoke about support groups, that when she went, everyone was in their late 70's. Those that are younger often don't get the support they need, or too ashamed in asking for help.

I think close family/friends need to realize all aspects. The illness, the current struggles encouraging a sustainable quality of life, and what life would become afterwards. It's not just because of a "bag."

That's the curse of having a hidden disease. And even when some people think they "understand" it, they really don't. I'm sure if your sick colon was laying on your arm being all abscessed and such, they would say things differently. Of course, they might just be THAT dense!

It sucks, but just don't discuss it with them. Lean on your husband, talk to your daughter. Go with the supportive friends.

Part of me wants to say "inundate them with your symptoms." "Hey, I'm going to the bathroom now." "Wow, look what came out" "oh, gotta poop again got about ten seconds to make it to the bathroom." "Man that's alot of blood" "That was a pain level 6" "Time to give myself a shot" "Pill #20 today!" but if your mom lives with you and she STILL doesn't get it, I doubt that would even work.

To bad you can't legally put a bunch of miralax into her food. When she whines about having to run to the bathroom, tell her to suck it up!

thanks pro- I rememebr us emailing also, & your succes with an ileo is an inspiration to me. I can't seem to get it thru my head that I'll do this- there's no compelling reason not to, plenty of compelling reasons to go ahed with it, yet I keep thinking "What if I wait?".... which is stupid, I just want it over & done with.  I know that life with an ileo is not bad. But what if I hate it? Which everyone probably does, initially. And I know my families siding against it affects my own decision. But... not enough. I truly belive that I will feel better afterwards. And be happy that I did it. I've just got to keep listening to myself, not other people. And you guys, of course!

Tell your family to go speak to the surgeon who will tell them exactly what will happen if you don't have surgery...