It's not like the Bob Newhart show's....

I recently had to have my badge renewed at work and was told I could keep the original photo on the old badge. I said "no, because my hair grew back and is nice and long now, so I want a new photo". My co-worker overheard me (I went to the badge office with 2 other guys), asked if I had cancer. I said no, but I was really sick for a while. He then proceeds to tell me that his neighbor is the top fundraiser for the Susan G Kolmen breast cancer walk here in San Diego. I told him that I have a disease nobody likes to talk about, let alone promote and fundraise for and then I tld him I had Ulcerative Colitis. He didn't bat an eye, make a grimace or say another word.

Like I said.... its a disease nobody likes to talk about. I don't advertise about my past medical history, but I am no longer ashamed and will talk about it if the topic of "medical issues" come up in discussion. I no longer care about what others think and I am actually proud to have overcome so many debilitating obstacles in my past to not only survive, but to do my best to thrive.

Also, I recently went to a small church related-group function and one woman has allowed her past experience with breast cancer define her life for the past 20 years later. I have heard her begin many conversations about how she is a "breast-cancer survivor" and volunteers at hospitals to teach young patients what it's like to be a breast cancer patient. Only the leader of this small group was familiar with my past medical issues. So, the leader then proceeds to state "I think Leslie should share her experience". YIKES! I'm now put on the spot and in the spotlight". OK.... I tell the women what happened to me and the fact that I no longer have a colon and I use the opportunity more as an "educational" discussion, rather than a "woe is me" topic.

As I was leaving, one women said "You are doing remarkably well for somebody who has gone through what you went through". My response "Thanks, I don't let it define me".

Lord forgive me, but yes, it was kind of a slap in the face to the other woman who has let her breast-cancer "define" her for the past 20 years. I just think there is more to us than our "disease(s)" and I hope to be an inspiration to anybody whoever desires to get to know the "real me" before they ever know I had a debilitating disease.

I do think that IBD *is* getting talked about more, definitely more now than when I was dx in 1982. I took part in the "belly out" to show your scars this year. *I* talk about my journey when I think it benefits people, and I'm a nurse so I have no issues talking "bodily functions" or anything like that.

It doesn't *define* me, but it's been a part of my life since I was 11. That's most of my life. I have no real memories of going to the bathroom "normally," but overall I had a pretty normal childhood. Which was good.

We've all shared our chronic pain and health problems in the group. Everyone is supportive and knows about my UC and j-pouch. It just struck me as silly that they didn't think they could pour that warm salt water into their nostrils.

My hubby and I have a saying from Buddhist teachings: "Suffering is relative."

If the only suffering you've ever known is a sore throat and a stubbed toe, then that's the extent of what suffering you can realize. You can learn empathy, but you can't have an understanding for more pain and suffering, if you've not been there.

I've tried a Neti pot, and blargh. Not that it makes me squeamy, but I can't do it. It chokes me up and makes me gag!! However, butt stuff doesn't even phase me at this point in my life! lol I can sort of understand their issues with it.

I have often wondered if I could have helped my family members and friends (as they helped me) with the gross and disgusting things they had to do to help me along my most critical and sickest days after being released from the hospital. (My goodness, I didn't even want to deal with it while I was in the hospital. It took me a long time to deal with the situation I was in, let alone learn how to do things for myself).

First, I think I would have been terrified of screwing up with all of the injecting of saline and antibiotics into my PICC ports and abcess drain bag.

And then the sight of a colostomy, bag and open and infected wounds on a persons most private areas would have made me squeamish. My poor mother had to help dress me, her 50 year old child in hefty bags (to keep the PICC ports and drain bag dry) while I attempted to take a shower.

This all went on for over a month after I was released. God bless all of those who helped me on my journey to come home.

I think its because I have extreme empathy for pain of others, but I have a high tolerance of pain for myself.

TE,
I agree that people are insensitive at best and downright lead baloon at worst...
Squirting saline solution up your nose is not exactly 'gross', just a bit un-usual in our day and age although for centuries people cleared out their sinuses that way...over here they even have sea-water sinus lavages for people with chronic sinusitis (some people swear by it) and it is an obligation post sinus polyp surgery...they make you rince out the crusted blood that way.
Yes, they would probably faint dead away if they had to experience what we do every day...yeesh. (but then again one never knows what one is capable of until they have to face it)...let them stay innocent.
Sharon

My favorite is always, "You look great! You've really slimmed down!"

I just answer, "Want to know my secret?" and if they say yes, I tell them.

But, seriously, I have no shame about this. It is something that happened to me, that has been a major part of my life for the last eleven months, affected both my personal and professional lives, and I'm more than willing to tell people if they're interested.

It's really just poop at the end of the day, and everybody poops. But do I maybe like to try and gross out some of the more prissy people I know?

Yeah.

And I couldn't survive an Austin fall/winter pollen season without a Neti pot. I was in the no way camp until my wife basically made me try it.

Stuff works miracles on cedar allergies that laugh at Claritan.

You all are funny. "It's all relative" and "We all poop" etc.

I had individual therapy Tuesday with my therapist that went "yew". She was apologetic and I said that's what I thought at first but the neti pot works for me. I said to imagine that about ten thousand times worse and make it about shi$$ing. How no one wants to talk about diseases below the belt. Then we discussed my partial blockage over the weekend and how my life revolves around going to the bathroom.


Lesandiego, I'm a mother and I'm pretty sure your mother was happy to help all that she could. You are alive!

ATXguy, I lost 85 lbs and no one wants to know how, lol. (25 pounds have found me back!)

I like the chronic pain group. It's helping my attitude and that's the purpose. I highly recommend attending one if you can find it.

I don't go to therapy but I have never been ashamed of what I have. Even at work when I could not make it to the bathroom. I just tell the supervisor I will be right back.. Go shower and go back to work. He said one time... And he was good about it... Understanding.... He said he never would have come back. I said I gotta pay the bills and that's not gonna stop me.
Now my wife is an angel. Serious. She helped me with things I don't know if I could stomach. I am squeamish. She did it all for me and that defines her love for me and I will never ever forget it.
My kids know all about it and will help at a drop of a hat. I couldn't ask for any better of an environment. Now work is different. They all know I have problems and I get teased. In a good way. Might be a mean one in there once in a while but I just blow it of cause they don't know how lucky they are and someday when they are older may have the opportunity to realize how important the digestive tract is.
Bottom line is I am not embarrassed by any of this even to people that don't understand. They may get lucky later in life by not having any issues with their digestive tract but I would bet a lot of older.... 70 plus have some sort of problem.
And there are a lot more people out there with problems than we even realize. Look at all the people in the waiting room when you go to see you gastro doc. Usually packed when in there. So no one should beat themselves up over it. It was the hand we were dealt. We are being tested by someone. Sorry... Way off subject.
Richard.

It's fantastic hearing all of your positive experiences. My husband recently had his prostate removed because of cancer. He's doing great, has a positive attitude and even jokes with everyone about changing his diaper. It makes our 4 and 8 year old grandsons giggle. It will take a while to gain back control as 2 of the 3 sphincter muscles are damaged with the surgery. I learned something new. I thought the only place with sphincter muscles was were we deal with them.

What he's really gained it more compassion for me and anyone who undergoes any type of surgery involving their normal bodily functions.

I struggle a lot because of my former sports situation. It makes it amplified so many million times for me that so many people are looking. I had to kind of move away to an area of my hometown where I won't bump into as many people as I knew. But it is still very difficult. Even the closest people to me have had difficulty dealing with it. I wouldn't care at all if I could find a job. But economic problems combined with disease is killing me.

Dear Douglas,

Please see my post to your topic about weight. I feel like I know a bit of what you are going through. I had to sell my CPA firm due to my fibromyalgia and UC 10 years before my j-pouch surgeries. I had hundreds of tax clients, not counting the monthly accounting services and Audits that my employees and I took care of. It got so I would hide from my former clients if I saw them at the grocery store, Walmart, etc. I just didn't want to explain it all to them. I'd sent them all a letter explaining I'd sold my firm to two other CPA's due to my health problems. I had not told them exactly what my health problems were in the letter.