dealing with friends 'helpful' comments about having a bag

Hi, this is my first time to this section of the site, I usually post on the Ulcerative Colitis section but am now expecting a proctocolectomy in about 8 weeks and I wanted some advice. Since it was only finalised on Friday it is just starting to sink in properly. The thing I'm struggling with most is dealing with having a bag inbetween the 2 operations and the fact that I may potentially be stuck with a bag for the rest of my life if it doesn't all go to plan. How do people deal with friends trying to be encouraging and helpful saying 'oh don't worry about it, you'll be fine, I know a 'friend of a friend' who has one and they are fine, they live a normal life etc'. This frustrates me because they are not the ones who have gone through it and are probably not close enough to anyone that has. I want to know the ins and outs of having a bag so I can be fully prepared. I don't know how to deal with people who just tell me 'it will be fine, its manageable' when even though they are only trying to help - they aren't the ones who have gone through it themselves.

It is an adjustment but SO worth it

Does your doctor have a patient who's been through the surgery that talks to patients? Your local ostomy association may also have someone you can talk to. This board is amazing at getting the 'real' truth out...most of us here have an amazing quality of life now and wouldn't go back the the 'real' way. These diseases are tricky and make us dependent on so many meds and/or procedures that we forget we should be living. I volunteer at my hospital and meet many people who are just like you...they usually tell their nurses, after they have met me, that they NEVER realized their life would be so normal

Ask away with questions. None of them are too silly or weird, if it concerns you, ask!

Ok thanks. I know I will eventually be ok, its the getting there that I'm worried about! I think even though I've been expecting surgery to be the outcome for so long, now that its actually happening in a few weeks its really hitting me. But thank you for your support

cghopper said...
I hate that too. It's like when my dad died of cancer. I had some guy tell me he could understand beause his relative had cancer. Of course he then went on to tell me that person came though it. Yeah... not the same thing. People have good intentions, but can be thoughtless. I have one friend I can call and talk to this stuff about because I know she will never tell me, this is only temporary or give me an example of another person's situation because "it could be so much worse." I normally just say, "I guess so" or "I'm working on it" when they try to "cheer me up." Not what they want to hear, but that's how I feel. Life's not always bright and cheery and we're entitled to feel bad for ourselves every once in a while. I look at myself all they time and say, I can't wait until this part of my life is over. Well, eventually it will be and hopefully in the future I'll just look back and think, well, that really sucked. I'm glad I don't have to live like that anymore. I'm really happy now.

Thanks for your comment...have you had a similar op?!

its normal to go through depression, people actually go through the stages of grief when losing a major body part. It's ok to be sad at first, but just remember you will be healthy!
And noone can tell you they now exactly how you feel, because noone deals with things the same way. But i can tell you that i was happy and sad for a while, and now almost four years out, im pretty much always happy! i might get a bit down maybe once every three or four months, it lasts like aminute, then i remember why i have a bag, and what all i was missing, and im good!
and please please please don't think of it as being stuck with a bag, it's not bad, it's very convient, and there is nothing you cant do!

My best advice? Get a dog!

My recently departed Golden was my personal therapy dog although not trained for this service nor did I need a therapy dog. But she was very in tune with me and my various IBS stages (sorry to peek into your ostomy forum). She was such a comfort when I felt sick. I did have a temporary colostomy 11 almost 12 years ago and it was my experience that most people do not want to face that you have one. Most people with normal bowel habits and non bowel issues, just do not want to think about we go thru. Not that they don't care, I think on some level, many of them do, but people who can eat whatever they want to, have one bm per day (with little trouble I might add), just cannot relate to what we all struggle with (the various bowel issue syndromes and conditions).

I learned long ago to not talk about my troubles much, if someone presses me for what's ailing me, I chalk it up to my stomach. An out and out lie, but hey it's what they want to hear and they usually leave me alone. Most people just do not want to hear about repeated bm trips to the bathroom, bloating, bleeding, and all out D.

The times I've tried to explain what I go thru, the most common response I've received is - can't you take a pill for that? "That" as if that one word - that - lumps us all together.

Sigh......please don't think I'm jaded about non-bowel issue people but in many ways I am. They just simply can't relate to what we often go thru. How can they? I covet what they have - a normal GI tract!

I should add that the 8 weeks I had a colostomy were of little trouble or upset. I managed quite fine with an ostomy. Sometimes I wonder what my life today would have been like had it been permanent (probably easer than living with multiple bm's, per day).

Good luck though......always.

Mary/Marsky - rectal cancer survivor, 11 years, living without sigmoid, 15 inches of colon and dealing with all that **ap!

Post Edited (Marsky) : 2/3/2011 6:52:19 AM (GMT-7)