"Colon disease" story

Ok, so I go to the hairdresser today to get my new short haircut trimmed which I love (losing lots of hair and wanted to reassure myself I still have thick hair so I went short from long). Anyway, my hairstylist starts telling me a funny story about a "nameless" creepy male client that comes to the salon. We are both laughing and then she tells they also have a lady who comes in and tells everyone she wears a diaper and has to get up frequently due to her colon disease. I continued to laugh, but inside I was dying. I was thinking how gross and weird our disease seems to others. Tonight I am having a hard time seeing the positive side of life and having this disease.

I would of tried to education her too. People think that this disease is nothing more than a stomach ache. If I ever run across ignorant people, I just tell them to read about this disease and then come back and tell me what you think. I have run out of patience for the people that make stupid comments about this disease.

I don't even have it as bad as a lot of you in this forum. I'm just tired of people not taking this disease seriously. One of my friends is always saying to me: oh, just eat a little of this, it won't bother you. That really bothers me. He has diabetes so I tell him: oh, eat a bowl of sugar, that won't bother you at all.

It's incredibly unkind to laugh at other's problems, and yet we all do it. I'm sure there must be things I find humorous that would hurt or offend others; we just don't see it unless we're the ones being laughed at. So I think it's not necessary to feel bad about either yourself or her. If you could educate her, so much the better, but I understand how hard this is.

After more than 10 years with UC, I've become pretty matter-of-fact about it. I figure if people I spend much time with know, I won't hear their "funny" stories. And I'm just amazed at how often someone says "Really? Wow, I have IBD (or UC, or Crohn's) too! There are far more of us out there than I could have believed. I find it empowering to know I'm not really that far off normal.

Your stylist sounds like a proper b****. I would have given her a piece of my mind.

I bet she watches shows like Oprah and just loves to judge other people.

healthy people can never understand what someone with a particular disease has
to endure.

I'd be more inclined to give this person a pass if they are fairly young.
I think all young people are ignorant & stupid, myself included lol
Having health issues makes me much more sympathetic to people with other problems
such as MS, parkinson's, etc etc.

I'm willing to bet everyone in this forum has judged someone else for something beyond there
control at least once in there life. Judging people is human nature I think.

Not an easy thing to hear, but if you can tolerate UC then most everything else in life should be easy.

You should have said btw, I have an intestinal disease also and its beyond my control and people like
you scoff at me. I'd willing to bet she would have been frozen stiff if you said that.

And god knows the best place to gossip is the hairsalon!
How many times i felt ive been treated with hypocracy and im sure some hairdresser have gossiped on me before. But you can feel when a hairdresser is genuine or not.

And I usually am very generous with tips even with a bad attitude just to shut her up!

So surely you know if she is genuine or not. Honest though I don't know why this lady said to everyone she wears diapers.. maybe it not to everyone but because of the gossiping it ended up by everyone knowing!

It is a horrible condition and this lady even in a bad flare with diapers deserves a nice haircut... because god knows you feel bad when flaring. Hainvg a fresh haircut can uplift your day for sure.
Maybe im a bit more cocky but im the type who could have replied to her: Oh sometimes I wear them to you know... you can never be too safe!

Second reply on this topic, prior to my rectal cancer and resection, I hadn't a health worry in the world. Could eat anything I wanted and had 1 or 2 bm's per day. The only time I ever remember having D was after enjoying 3 whole lobster dinners in the New England area over a week's vacation with our family. Because they were so reasonable. The last one was too much for my system, even my husband said the next day - lay off the lobster dinner's Mary! That was the ONLY time I ever remember having a GI problem.

As I look back on how "normal" my bowel habits were back then, and really my entire health for that matter, I know I wasn't very sympathetic to others. I hope and pray I didn't say insensitive things to people who were struggling. I recall a coworker unable to eat lunch, because she had had stomach cancer and her diet was severely restricted. Like me now, you'd never know it to look at her (I get that comment all the time, but you LOOK well!). I hope I didn't offend her at any time, this is going back 25 years. Naive me probably said a few insensitive comments along the way. I do remember thinking - she doesn't eat? Well, now I'm in that boat - I can't often eat either, not at work or before social events. It's foolish for me to eat put one morsel of food in my mouth.

Getting off track, it is human nature to criticize and not show empathy for others.

Sometimes I have to just remind myself I probably wouldn't have understood another person's medical struggles like I have now - before my surgeries. I know for a fact I would have been shocked had someone described to me what I go through now.

I do tend to give people a lot of leeway if their health is good, they have nothing to compare others' health struggles to.

However, this woman is a hairdresser. Maybe younger stylists don't adhere to this but I thought there was an unwritten rule - what you tell a stylist is confidential?

Wow...it is just amazing how suffering can make us more sensitive and sympathetic towards others. I mean i was just thinking if i didn't have this disease and i was this hairdresser then would i have found the 'old lady with diapers' funny? hmmm i dunno but maybe?
Where as now stories like this just make me wanna cry :(

allswell, that's fine you asked - I'm an open book. I had a 1 inch malignant tumor located in the sigmoid area (barely inside, I could feel it), removed April, 1999. Stage 1 Rectal Cancer, no treatment necessary. Haven't had one polyp since (not even benign). Initially my surgeon thought he could perform a dilate/scoop out tumor type approach, 1 hour procedure, 1 day hospital stay, 6 weeks of some type of chemo and/or radiation. However a pre-op ordered rectal ultrasound revealed my tumor was penetrating the third layer of bowel wall tissue. So my 1 hour/1 day initial approach became 5 hours/7 days in the hospital, huge incision, temporary colostomy, reversed 2 months later (this is when my "fun" began, repeated daily bm's, as long as I eat). While they were in there, they opted to remove my gall bladder as well, since a cat scan revealed I had hundreds of gall stones. They said - you don't need a GB (famous last words, although I don't experience the yellow bile bm output). Because my surgeon got clean margins, I didn't need chemo or radiation. And as I pointed out, my cancer has not returned.

I need to mention my tumor was NOT penetrating the third layer of bowel wall tissue, it was about to but had not entered it. My surgeon said I could have had the initial simple surgical approach but stray cancer cells would have been released and from his standpoint, it's always best to obtain clean margins.

I am now left with only 10% left with my sigmoid, at best really. They removed 15 inches of colon above that point (why, not sure) but they pieced me back together with permanent staples and because this lowered new sigmoid area is really my colon, it cannot swell and collect stool through out my day, it has to come out. I can only hold stool for about 30 minutes, tops.

In hindsight, I believe I should have had a permanent colostomy.

I've been given several surgical approaches if I'm interested (I'm not):
regular colostomy, inverted colostomy that I could irrigate once a day, and be stool free for 23 hours (I am highly skeptical this would be the case) and finally, a J-Pouch.

All 3 are purely elective on my part, not necessary.

My GI doc keeps telling me what a superb job my surgeon did, each time I have a colonoscopy. I just laugh and say - thanks but I'm not looking!

Anyway, I'm not a straight pipe but close to it. I accepted long, long ago I will have multiple daily bm's, for life. I just want the stool formed, not messy and easily passed each trip to the toilet. That's my problem - the stool is often inconsistent but a low residue diet, Colace and a Probiotic all together help tremendously. I also have a light social calendar (hubby and myself have become real homebodies as we get older). I love being home! In my bathroom with my sweet dog at my feet. That's heaven to me. Oh the things you find comforting in life when you have a GI problem.

Well, that's my story. As I struggled to deal w/o a sigmoid (the GI tract's internal dam/reservoir), my docs all said my symptoms mimic other disorders, IBS and Colitis, but minus the blood).

I thank you for allowing me to pop in here, even though I don't share your official dx. I do however share your struggles to exist in a normal colon world - that I relate to TENFOLD.

Some people are plain ignorant......best to ignore them

This is kind of related to this conversation, but am I the only one who didn't laugh hysterically in the movie Bridesmaids when the bride poops her pants in the street? I remember being in the theater seeing everyone laughing, even my friends, and thinking, this isn't funny at all if it has happened to you for real. Oh, ha ha ha, people who crap their pants are so funny!

aquafly79 said...
This is kind of related to this conversation, but am I the only one who didn't laugh hysterically in the movie Bridesmaids when the bride poops her pants in the street? I remember being in the theater seeing everyone laughing, even my friends, and thinking, this isn't funny at all if it has happened to you for real. Oh, ha ha ha, people who crap their pants are so funny!

And why isn't it funny? You cannot decide what is humorous and what is not to someone. Back in the 60' they were making fun of asian people on how the walked and talked...whatever.

Jim Carrey in Ace Venture. He was impersonating a patient in a mental institute. That was hilarious. What am I supposed to do....stop laughing because there are real people that act like that because they are disabled. Pretty soon we wont be able to do anything. This is not politically correct, this is not ok and on and on.

It is what it is.