Boosting Intimacy with an Ileostomy - Share Your Secrets!

It starts with your attitude about life and not just your stoma. I would be willing to bet that you are negative about almost everything.   If you can say one positive thing each day and build on that, you might, in 100 years, come full circle.

Hi everyone,

        I know this is an old post on a very serious and problematic aspect of having an ostomy... any physical "correction" which involves shit or urine or nasty bodily fluids possibly coming into contact with a loved one or even a not-so-loved one. Some people must depend on another person to remove a shitty bag or clean up after a burst shitty bag dumps your shit all over a bed, a floor, or on top of the loved one while having sex or fooling around. This is now a fact of our lives, nothing is going to change it! My brother often mentions to me how amazing medicine is becoming and a person may soon be able to have a custom-made colon (etc., etc.) grown for them in a lab. This will not help those with an immune disorder which will attack the new colon, just as it attacked the old one. Your body has to accept it as your body part. I could sarcastically answer him with, "That's not going to help me..." but what I say is by that point stem cell research and gene therapy will be able to fix this immune system problem as well, the glass is half full, not half empty! The pain and suffering we go through are the foundations upon which future medical breakthroughs are built. I was one of the first people to have a "J Pouch" constructed in Walnut Creek, California in the mid-80s. It worked well for a number of years and I should have had it removed or disconnected as soon as pouchitis first developed. Instead, I stuck with it for many years and was told that it could get better, then it was "my own fault" that it was not working, blaming the victim you might say. My bad experiences paved the way for many developments since then. The bags were really crap in those days, a plastic clip held it closed at the bottom. That clip broke many times and dumped a whole bag of liquid shit down my leg more times than I care to remember. Bags and wafers, adhesives, and closures are so much better now. All these improvements were built on the pain and suffering of earlier ostomates.

    "Past Member" wrote that some things are worse than death and I must agree that in some scenarios that is true, just my personal opinion. Being in a "locked-in" condition, you know and see what's happening but cannot move or speak, just move your eyes, now that would be a fate worse than death (for me). Worse than death is in the eye of the beholder. For a long time, I woke up every morning, looked in the mirror, and asked, "Why couldn't I just have died, my heart stopped, I was unconscious for a couple of weeks and nobody knew if I would ever wake up or if my mind would be intact when I did wake up, they should just have let me die." I really believed that and was miserable for a very long time. I thought about helping things along and killing myself many times. Then I thought, you can kill yourself at any old time but right at that moment life was preferable but still left that option on the table. Choosing to live is a decision that can be changed, choosing to die is a decision that cannot be changed, when it's done it's done.

    I should write a log just about this experience in detail but I will give you the abbreviated version right now. As I rode my bike across the Golden Gate Bridge one morning about 7 AM going for my morning bike ride, a beautiful, perfect San Francisco early fall day, no fog, perfect blue skies, beautiful views from the bridge of the city that I love I had a rare and life-changing encounter. As I biked around the North Tower I screeched to a halt, literally (I'm fast on the bike!!). There was a person with long blonde hair standing on the painter's platform (like a small train track) on the SF side of the bridge. Her long blonde hair was blowing straight up with the updraft at the tower. She held on with one hand and her feet were on the outer track, the next step was the rushing very cold water current flowing out to the Pacific, almost a 250-foot drop from rail to water. I stopped beside her, I could reach out and touch her she was that close. She wore a long cloth coat which blew in the wind like her hair. At first, I didn't believe my own mind which told me she was going to jump so I said, "That's a pretty dangerous place to get the best view of the city, maybe you should come back in here, take my hand I'll help you down." She just turned her head slightly, not enough to get a full view of her face as her long hair whipped up and down and around her face. I could have grabbed the long coat but, what if she was just messing and not really intending to jump? She could slip out of her coat and fall if I grabbed it. I had something less than ten minutes to talk her down. A lady jogging on the bridge (just one person, the bridge was empty, just cars whizzing by) stopped and I told her to get the bridge patrol and I would keep an eye on the blonde lady on the rail.

    The Coast Guard Station is on the beach very near the bridge and soon I could see them scrambling with their gear, hopping into the very fast rescue boat. Then I looked up and the lady had let go of the rail with both hands. She held her arms out at full stretch and looked straight ahead at the postcard-perfect view of Alcatraz, the white beach of Crissy Field, the beautiful woodland of the Presidio, Angel Island in the middle of the Bay. She stood there for maybe a minute or two, just standing being buffeted by the updraft of cool morning air. This was the quintessential San Francisco fall morning, so perfect, so beautiful, the reason so many people come here and never want to leave.

    She turned her face to the cloudless blue sky as she lifted her two feet simultaneously off the narrow rail and leapt out from the rail. She was looking straight up as her body cleared the track and she was on her back, coat fluttering in the wind, her hair flying up and whipping around her head. My first thought was that the big coat might act as a parachute and break her fall a little. My next thought was how quietly she seemed to drift off the bridge, she made no sound, no scream, no arms flailing, no hands grasping for salvation, trying to take back her decision to jump. She was totally silent and seemed to be resigned to her fate, to the fate she had chosen for herself, resigned to the fact that she was just about to die. It felt like forever, her fall, seemed like slow motion, so much was going through my mind as she got smaller and smaller, as she came closer to her death. I think I thought, she is alive right now, right this minute but I know and she knows that she will be dead, just a bag of dead bones inside a dead cold skin in less than 30 seconds but it felt like 30 minutes. I wondered what she might be thinking as she floated through the air, she apparently didn't regret doing it? Was she talking to her God, asking to be forgiven for not wanting the life that her God gave her, for wanting to give her life back, was she just defective and had to be sent back to the baby (life) producing "factory". Did she feel guilt at giving back her gift of life? I had time in those seconds to think of all kinds of things between her jumping and the moment she hit the waves, I wondered what she was thinking, maybe nothing at all, maybe thankful that her troubles were now over, her pain and mental anguish would stop as soon as her body hit the water, water that is as hard as concrete when falling into it at that speed. Water that scrambles your insides like scrambling an egg, smashes your brain into your skull, like hitting a wall at 80 miles an hour without an airbag.

    Just as I saw the huge splash of white water fly up in a circle around her body the Coast Guard was almost there. They must have seen her from their station to have launched the rescue boat so quickly. She was quickly being pulled out under the bridge by the very fast current that flows when the tide is going out. The Coast Guard boat circled and cut her off as they quickly scooped her body out of the fast-flowing current and zoomed off to the beach. Letterman Hospital (military and no longer there) was right there, just off the beach so they probably took her there, maybe two minutes from the beach.

    I walked my bike back over the bridge to the bridge police offices. The officer's response was, "Another one, here you go, just fill out this incident statement and someone may be in touch, have a nice day." (paraphrasing but close to verbatim).

    The next day the California Highway Patrol called me at home and verified that I had witnessed the incident and there was nobody else involved, etc. He was much nicer than the bridge police (CHP are very courteous) and heard my concern and trauma from what I had seen. He said the woman had lived through the night but had succumbed to her injuries that morning. He said that when people fall, as she did, on their back there is little chance of surviving. When people manage to land feet first there is better than a slim chance of surviving with broken limbs, she didn't have much of a chance. He said her insides were all smashed up. She had tried to kill herself before, he said there had been at least one other incident.

    That was the day I realized that as they say, "Where there is life there is hope", when life is gone there can be no hope, it's done and cannot be undone. Most of our life problems, mistakes, most of our fuck-ups (sorry, I'm Irish, the F word is just punctuation for Irish and English people!!!), most of the problems we create for ourselves or those that are heaped on our shoulders without our participation or consent... most of them can be fixed if given enough time. During that time we may be humiliated or fearful, stressed and depressed, sick and tired of being sick and tired as they say!! None of those things, those feelings, those disappointments, the things you believe you will never get over, the failures whether personal or business... none of them last as long as being dead!!! If that lady had received counseling, or drug treatment or some other intervention she might be alive today, with children or grandchildren.

    I have had many setbacks and failures, lost dreams and lost hopes and a lot of lost time when I felt so sorry for myself. When I felt that my pain was mine, not yours, not the other person with an ostomy, sure they have their pain and suffering but that is their burden, I have my own personal, unique burden, I am not built like them so my pain is different, unique to me so don't try to demonize me or make me feel guilty about complaining about my pain. You deal with yours as you see fit and I will deal with my own as I see fit and right now I feel like my life has been stolen from me, my future is gone, I cannot and never will be loved for me, how could anyone want or love me, I'm a wreck physically and a bit of a wreck emotionally, who could want that, who would want to share that?

    I felt like that for quite a long time. I had my Vicodin to slow my output (from my J-Pouch), to stop me crying from the intractable pain in my ass caused by burning, scorching stomach acid. My pain was unlike anyone else's pain, my pain was different and I was very, very angry about this. Then I discovered that a few glasses of wine after the Vicodin was even better, I could actually eat without crying with pain in the bathroom as I shit lightning bolts and broken glass out my ass. This was not all the time but way too often to allow me to feel and be "normal".

    Fast forward......

    I looked at dating sites for ostomates and was going to try and create one (never got around to it lol). I wrote to lots of women and made some great long-distance friends with whom I could share my fears, loves, hates and just general life stuff.

    Then one day, out of the blue I hit the jackpot, my ship finally came in and I had a personal invitation to climb aboard... I found my other half, my soulmate, my lover and my best friend.

This is way too long. I will save this as a blog after I put it out here. Have a look at my blogs, if you feel interested and I LOVE to get comments. Everything I write is honest and true for good or bad and from my own personal experience.

All the best to everyone. I hope the future has been good to you since you wrote about your misery as an ostomate, I hope you found your life and you are living it.

Eamon, aka Magoo XOXO

You guys are too funny!! Love a great sense of humor!! Besides, we gotta stick together! I found a bag that is round and no bigger than the wafer. It's opaque lined. It's made especially for intimacy and even swimming/jacuzzi. There's no clip either. It's fantastic! I'm trying to upload a pic of the product but, it's not allowing me!! I'll post the pics of the product in my profile and leave them there for a week or so!

Hi, I would suggest writing to some interesting ladies on this site. There are so many pretty ladies here, intelligent and quite chatty. You will feel a connection to someone if you persevere.

I had three blissful, loving years with my sweetie, Kitty. I met her on an Ostomy site and after a fairly short time we made that connection and knew we had to be together.

I am in Ireland and Kitty was in Silicon Valley, California. Would you have thought this could happen and it would work!!! Kitty had just 18 inches of her small intestine left and no colon, and she was the most kind, compassionate person you could meet and so pretty. She was an SLP, Speech and Language Pathologist, and specialized in working with 3 to about 10-year-olds. She helped so many little children communicate with the world. Many would come in mute and leave speaking again.

Hang in there and communicate, be nice and polite and you will get responses. You will know it when you feel it.

Eamon

You are indeed a good writer, please don't diss yourself on that. You are being honest, which this is all about.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I'm sorry you are in so much pain over this.

Hahahaha

Great tips here.