Finding Love and Laughter with an Ostomy Bag

I have suffered from Crohn's disease my whole life, and although I have spent many days and years in and out of hospitals, I have never given up hope that someday there would be a cure for this dreadful and painful disease. Sadly, a little more than two years ago, I had to succumb to major surgery, and now I have an ileostomy (I donated my colon for research, although I think my colon was pretty far gone by that point, or maybe too many holes in it, ha, ha!) There have definitely been some challenges in adapting to wearing a "bag" socially and mentally, along with leakage problems, but I am coping somehow. The main thing is my positive attitude and undying love of life, which I hope everyone who reads this blog will also come to realize, and that it's the little things in life that can make you happy, like listening to a bird chirping in the morning or watching a beautiful sunset. I find myself dating again at middle age, and even though I have been rejected by men recently because of my ostomy and their complete lack of understanding of my disease and my surgery, I can honestly say it has not been an easy road to recovery emotionally on any level. However, I still maintain a positive attitude ultimately, and in the end, I don't look at it as a handicap anymore, but as a war trophy because, as we all know, we have all been through hell and back. I have now found the most incredible man whom I adore and who adores me for who I am, and my ostomy bag is a non-issue, so if that can happen to me, it can happen to anyone. I know dating is hard enough without having physical ailments, but let this be a testament to all my ostomates out there to just keep believing.

Some embarrassing ostomy moments, hmm, let's see... cute guy checking me out, but ostomy bag was full and it looked like I had a penis with a hard-on, ugh!

Keep feeling my bag to make sure it's not too full, almost like adjusting myself, but I'm a girl, ugh again!

Met a really cute guy and was flirting, but realized my bag was leaking, had to stuff a napkin down my pants and leave the restaurant.

Try to crack jokes with my colorectal surgeon, but I keep forgetting he has no sense of humor! LOL!

I really enjoyed reading this, Santabelle. You're a great writer and it sounds to me like you really have it all together. Your positive attitude, sense of humor, and appreciation of the little things in life are inspiring, and your list of most embarrassing moments made me think about my own. There's probably more than I can remember. Maybe that would be a good topic for this forum. Everyone, list their most embarrassing moment :). That might be interesting. And yes, I've developed the same habit of feeling my bag all the time to see if it's full. In fact, I just did it! Hahaha.

Couldn't agree more PJT!! What a wonderful, uplifting, inspiring, and realistic way to look at our world.... (Santabelle, I too pay "special attention" to my little attachment in public) I love thinking of it as "adjusting my penis"...LOL, too funny!!! Thanks for the laugh.
BEG

LOL, we all had a few embarrassing mishaps. Good on you, love. Good luck. Penis hehehehehehe

I find it very humorous and curious that women would refer to "the bag" as adjusting their penis. Is that under the category of penis envy? I thought only men had "penis envy," ha, ha.

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I have a double ostomy so I guess I have a double whammy.. Ha ha lol.. I think the most embarrassing moment was when the bag totally gave way... Good thing was I was in the woods mountain climbing. I guess the bears don't mind... Oh my :P

Hello all my ostomates, thanks for all your replies and funny comments. You all made me smile and laugh. PJT, you were the first one to write on my blog, thanks for the kind words. This is such a great site and forum to be able to connect with other people in the same boat as me! Jacksprat, I don't think I have penis envy, but if I do, does this mean I need therapy??? lol! Well, it all seems like we've all had embarrassing moments of some sort at one time or another, but at least we can all laugh at ourselves about it now. BEG and Pooza, I think Jacksprat might be envious too, just kidding! P, I'm sorry you have a double ostomy which makes me always realize that there's always someone out there with much more serious problems than mine, loved the story about hiking in the woods, you really did become one with Mother Nature that day :-)
Before I had my surgery performed, my colorectal surgeon told me I could still live a relatively normal life and he told me about a runner on the US summer Olympic team that had a colostomy. I thought that was pretty impressive and inspiring. Also, I believe I read somewhere that one of the performers for the rock group Pearl Jam has severe, chronic Crohn's disease. Although we may not be famous rock stars, I think we all are still the brightest stars that shine in the universe!

Peg,
What you did in the woods was fine!

Remember the adage "Does a bear shit in the woods?" Heh, heh

Hi,
Well, I haven't been here for a while, tripped over this topic, yep, and couldn't resist.
As for feeling my bag, my hand is forever on my tummy, and now I don't care when I have eaten, say, a lot of veg. Oh, I have an ileostomy ;-), anyway, and the cabbage comes out in a block, lol. I am in shops or checkouts, and pushing the contents down in the bag. What are the security guys saying while watching the many cameras? The embarrassing things are, well, it looks like I have a large penis when the bag is full and blown up, and I need a toilet to change. My bag came away one sunny day, on a day out with friends, and my clothes are feeling very warm. Is it the weather? No, the bag has come unlocked... okay, I forgot to lock it. Well, I don't forget now. ;-) xx

Hi everyone, I have read the comments about hand-checking the bag. I had a bag for just under four years and had a reversal in Feb 2011. Every now and again, I find myself subconsciously checking for something that isn't there, and it reminds me of how things were. For what it's worth, four or five weeks after the reversal, I would have given my right hand to have had the bag back. It was a very difficult time for me, and I thought I had made the biggest mistake of my life. Week six was the start of turning a corner, and I was able to return to work after 8 weeks. It is now 5 months, and I still have the occasional bad day, but things have gotten a lot easier and better. I reckon it could be 18 months before I am at ease with the condition.
I thought I should write this because there are a lot of unfortunate and negative stories, and I just wanted to give hope to anyone considering having a reversal.
I came out of it thinking, you are offered counseling and support after the operation, but really you need it before you go through with it.
The whole experience of having to live with a bag is life-changing. It's a very personal life change, yet at the same time, you know there are thousands of others facing the same dilemma (will this bag leak today when I have a meeting) (mine did). You need an incredible sense of humor to deal with these situations, and that brought out a pride in myself at being able to deal with it all.
I feel I'm starting to waffle. I hope this will be of any help to anyone.

Hi Santabelle, it was really good to read your story. I had my ileostomy about 4 weeks ago and am still getting used to it.... It's nice to know I'm not the only person who keeps checking my bag! I was worried how my bag would affect my relationship - I got married a couple of months before the op - I know my husband knew how ill I was but I was scared he'd find it too much to deal with. I've been very lucky, he sees it as just another part of me. I'm so happy to hear you've found someone special and I wish you both every happiness. I love PJT's idea of listing our embarrassing moments. I went for dinner last night and 'my accessory' decided that I'd have wind and it made some pretty strange noises! I think the most embarrassing thing that's happened was when I was still in the hospital and got up very early to empty my bag and I clearly wasn't awake because I didn't have hold of the bottom of it properly... You can imagine.. I was horrified and so embarrassed that I had to get help to sort things out.. Still, it woke me up!!! Best wishes to everyone.

Hi Santabelle, this is such a great post and I was laughing about the way you described the full bag. And yes, I am always touching my lower tummy to gauge how full I am when eating out. At home, I am more relaxed. I try to disguise my checking the pouch by pretending that I am wiping away crumbs on my lap. People must think...wow, she has a lot of crumbs, she should learn to be more neat. Thanks for the uplift. LH