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When do you accept this is your new life? When do you get happy again?

Fri Apr 01, 2022 9:56 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

My colostomy bag has been with me now for a year and a half. I stay home where I feel comfortable. How do you fly? How do you eat in a restaurant, the bathrooms are small and crowded? How many times a day does your bag fill up? I am depressed, how do I accept this? What do you do when you are with a group of people and your bag starts to fill up? I am not sure what kind of answers I am looking for. I want to tell myself this is OK, I can't get there. Thanks for letting me vent.

Fri Apr 01, 2022 10:20 pm

That’s a tough one. I think it starts when you learn to know your body and how it reacts. Unfortunately some of the best lessons occur when you hit those obstacles in your journey. I’ve had to make bag changes in a port-a-potty; but after it helps to understand you can take on whatever situation your ostomy throws at you. Good luck in your journey.



Last edited by WiOstomyGuy on Sun Apr 03, 2022 3:39 pm; edited 1 time in total
MeetAnOstoMate - 26,920 members
Fri Apr 01, 2022 10:28 pm

I have had my colostomy over 30 years.. received it when I was a young woman. The only way to start living life again is to start doing things you enjoy in baby steps.. go out to  eat with friends you enjoy..when you bags starts to fill too much ..go to the bathroom and empty.. keep wipes and air fresher with you.and put toilet paper in the bowl to reduce splashes.. try it at home first. The same applies when you travel..no one can see what you are doing behind closed doors.. take care live is good.

Fri Apr 01, 2022 10:38 pm

Also hi neighbor..I live in Union City,Ca...I see you live in Mountain View,Ca.

Fri Apr 01, 2022 11:35 pm

Everyone is different. I've had my ileostomy for about  a yr and a half as well. At 1st it was extremely stressful. I hated going anywhere for the same reasons as you. I just learned to empty b4 going anywhere and be mindful if I know I have to go out with what I eat so it doesn't fill so fast( a little different with an ileostomy )and I always have a emergency kit with me just in case. Im still learning to be comfortable around people that I haven't been around due to COVID but for the most part they've be ok with it.Also if you have to go to the bathroom go. I always look for them if im in public just in case. As far as the depression I still have it once in a while but as time goes on its not as bad as it used to be. I found talking about it or reading other peoples post help knowing your NOT alone.



Last edited by Rose Bud 🌹 on Mon Apr 04, 2022 6:25 pm; edited 2 times in total
Sat Apr 02, 2022 2:23 am

IMO the worst thing any of us can do is to “stay behind the curtain” so to speak. Get out and do something everyday and then do a little more each day that gets you out of your safe zone. Like Maried said, baby steps. I’ve had my colostomy for a year now, and of course I have to be aware of it , but I don’t pay that much attention to it. I make sure it’s empty before I head out to do anything. While I’m out, if it starts to fill, I go to the bathroom just like I did before. I have a little bag in my truck that has wet wipes, a fresh bag, adhesive remover, barrier wipes, barrier ring, and a small towel. I’ve never needed anything but the wet wipes to make wiping the end of the bag out easier. I have a small bag in my backpack for work too and I’ve never taken anything out of it to use in the 3 1/2 months I’ve been back to work. And then I carry a thing of wet wipes in my lunch box for work and I use them out of convenience as I like how they clean the bag better than regular toilet paper. Having this bag is really not a big deal and probably better than what you were dealing with right before getting it. 

Sat Apr 02, 2022 2:57 am

Hello Burru.

Firstly, Let me thank you for sharing your thoughts with us, so that we may comment and perhaps support you during this difficult time.

One of the many things people have difficulty understanding about stomas is that it is not simply about acquiring a stoma; it is about the ‘LOSS’ of a previous lifestyle.

Loss affects people in different ways so, there is no straightforward answer as to how to overcome it or learn to live with it. There is a recognised psychological and emotional  pattern to loss/bereavement/ grieving, and knowing about this can be helpful in dealing with the condition. Sometimes it is helpful to get professional help in the form of counselling, but this is not always necessary (or helpful).  Understanding the condition and the process of recovery  can be obtained via various sources (including the internet), but often the most effective way through this is time and patience.

Now, onto the practicalities of having a new stoma and coping with the ‘inconvenience’ of it all:

They say  that ‘practice makes perfect’, which in some ways sums it all up. However, as you state that you have a colostomy , I would urge you to explore the procedure called ‘IRRIGATION’.  

This is where we put water into the stoma and it flushes out all the waste material in one go. Thus, we don’t need to wear a bag because there is usually no output from one flush to the next. I irrigate daily, but some people have reported that they don’t need to irrigate that often and two days seems to be common.   

With irrigation, all your other practical questions would be a thing of the past and you can get on with a relatively ‘normal’ life much quicker and more effectively  than having to cope with bags and all that they entail.

Irrigation isn’t for everyone, but if you are a suitable candidate, I would advise you to look into it asap.  It surprises me that your stoma nurse did not mention it to you from the outset.

There are several great videos about it on you tube, and plenty of people on here to give you advice if you have any problems.

As others have said, getting used to this new style of life can be frustrating and depressing, but there is nothing like overcoming these sorts of experiences for building one’s confidence and facing  life with a new-found vigour.

I do hope you manage to find ways to appreciate your stoma, rather than resent it. Whenever I have any doubts, I tend to recall what it was like before the stoma. This enables me to realise that I am much better off now than I was before.

Best wishes

Bill


Sat Apr 02, 2022 3:01 am

I have an ileostomy so my experience will be slightly different but I wanted to answer your question about flying.  Since my op in 2008 I've flown internationally several times with no problems at all (even on those 30+hour round the world long hauls).  The security x-ray scanners will show the bag but I've never had to explain myself, just had the occasional pat downs and questions but nothing intrusive or embarrassing, it's all been very discreet.  On the flight itself I've never had to change the whole appliance, just empty it as normal (which for me is about every 5-6 hours).  Aisle seat is always good too.  I try and keep hydrated and eat all the meals, I find jet lag can be 10 times worse if you aren't well fed and watered.  I pack all my supplies in my carry-on just in case check-in luggage goes missing in action.

For me, accepting the ostomate life was quite easy as for many years before the surgery I was just "existing" with the chronic pain and disability that comes with Crohn's disease and ineffectual medication that just masks the symptoms.  After the surgery as I recovered and my energy increased and I was no longer in pain or on meds, I start to feel like I was in the land of the living again, a lust for life that I still have 13 years later.  I certainly wouldn't have travelled the world like I have without being a "bag lass" so I will always be thankful for it.  Now if that bloody flu that's being going around would kindly bugger off I can continue on my journeys!

Sat Apr 02, 2022 3:07 am

In time, it becomes second nature.  Like you, I was extremely depressed at first.  Then one day, I noticed a guy, a veteran back from war, who'd lost both of his legs.  His disability was glaringly obvious; he was bound to a clumsy wheelchair for the rest of his life.  He and I were the same age, mid-twenties.  We were in a restaurant and he was laughing with his friends at a table near me.  He seemed to have conquered what I was still struggling with, he seemed to have just made the decision that he wasn't going to allow his misfortune rule his life.  I thought, people can't even see my damn bag and don't know it's there.  Why should I let it keep me down?  I went back to school the next month and before long my ileostomy was nothing more bothersome than my myopia.  It is what it is and you deal with it or, as Bob Dylan sang, you keep on keeping on.  Or was it Pete Seeger..?

Sat Apr 02, 2022 3:37 am

Thanks for venting and asking the tough questions, I accepted it and got happy when I realized the alternative to the bag is death and the bag allowed me to live to see another ( add your ❤️ Here )

- spring

 - tulip      

- my 11th grandkid  

- circus

- Sunrise  

- Dirty piss covered toilet ( I’m a plumber)

- fish

- my kids

-filet mignon 
- Easter  the true meaning of grace and forgiveness
-Day 

- Love


Sat Apr 02, 2022 5:22 am

Hi Burru, I have had my ostomy for 2 years now. And like you I stayed hidden up until the beginning of this year. Of course some of that was because of covid but not all. I was basically forced to go back to work but it really was a blessing in disguise. Now I am not only back to work full time, I am starting to venture out and do things. Baby steps here...  coffee with a friend on an outdoor patio, then maybe inside a very casual place, then maybe a light lunch, etc. I have a backpack (pretty blue with pink flowers) I carry everywhere with me that has all my supplies. Even an emergency lidded container to empty into if need be). I feel better having all that with me.  The one thing I do know is depression can change your view of everything. So I would get control of that first. Talk with your doctor. There are so many wonderful medications on the market today that can help. And there is no shame in that. We have been through a lot! It is wonderful that you reached out for help here! Big big {{{Hugs}}} to you.  🌻

PS I also did a post awhile back call 'Reaching out for help...'...just do a search for it. There might be something in it that may help.

Sat Apr 02, 2022 6:52 am

hi burra , you get on with your life and deal with things if they occur , i was on a plane from bulgaria and my pouch developed a leak perhaps it was due to the air pressure so went in the little plane toilet with my secure bag which holds all i need for a change , pouch ,wipes, etc and changed it then went back to my seat . another time i was at a social dance sat at a table for eight and my pouch ballooned unknownst to me and came away, you've never seen a table empty so quickly after changing my pouch in a disabled toilet i returned to the dance and carried on. accidents happen and things must be dealt with as best you can but their is nothing to be ashamed of or embarrassed about. do the best you can and go wherever you want . recently i went on a cruise to spain and portugal and had no problems . do not let your stoma define who you are. good luck for the future burra to you and all of us.


Sat Apr 02, 2022 9:51 am

Sounds like you may have depression hope your getting help with it. 

Just start of going for short walks and drives, walking and driving further as you go along gaining more confidence.

If you bag fills up when your out or with family and friends you just go to the toilet and do what needs doing as you would of done before surgery.

It's time to start living your life again and building your confidence  back up. 

You can do this! and get that spring back in your step enjoying life.

Sat Apr 02, 2022 4:15 pm

Hi Burru,  I can hardly add a thing to all the good advice and wise words that you have received here, except to say, you can get there, and there is really good quality life to be had after an ostomy.  You just need to be motivated.  The fact that you have reached out tells me that you are.  I was lucky in a way, in that my quality of life before my ostomy surgery was so poor, that the adjustment to living with an ostomy was really not the emotional or physical challenge it can be for some.  My life is so much better now that I am not living in constant pain and discomfort.  My activities are not restricted now, I can go where I want and do what I want, when I want, well, as soon as Covid is totally out of our lives that is!

Now that you have reached out, don't be a stranger.  As you venture out more and take on new challenges, you will no doubt have more questions.  We are here for you!

Terry

Sun Apr 03, 2022 4:41 am
Mmmm……”acceptance", such a telling word in the life of an ostomate. I wish I had some profound words of wisdom for you burru, but sadly I don’t….suffice to say it is no sin to feel the way you do. There is not one of the alleged almost 26,000 members on this site who, if they had a choice, would have a hole in their stomach regardless of what they say outwardly. It is also not a sin to vent your deep down feelings even if society expects everyone to be “glass half full”, not the opposite. Of course you want to tell yourself that you are fine and life as an ostomate is “ok" but if it its not, as in your case so far, then good for you for admitting as much. There is nothing worse than lying to yourself! As for depression, join the club. If ostomates were totally honest with themselves they would admit to experiencing some level of depression at some stage. Moving on. If you indeed do have a colostomy, you should take English Bill’s sage advice and look into irrigation. It has saved me. Unfortunately it does not work with ileostomy…..too much bowel has been removed. You can get there…..it is a long road….it does take time. There are many on this site who were where you are now. Good luck to you. I do hope you find some happiness. Keep well. V.J.😉
Azdancer
Nurse
Sun Apr 03, 2022 6:44 pm

Follow Mrcolitiscrohns on Facebook & Instagram. Very nice young man dealing with his ileostomy for 13 yrs, does great videos! 


_________________
RN, BHA
Mon Apr 04, 2022 4:57 am

Hi, I know exactly how you feel, but you have to stop thinking of the worst scenarios because 99 per cent of the time it won’t happen, I have flown 4 times to sustralia. Change your bag the morning your leaving take spares with you in the cabin and knickers and trousers. Go out and enjoy life, let people your with if you like that you have a colostomy, the will understand then and won’t make  comment if you fart. Make a joke of it. Relax and accept what you have

colin

Mon Apr 04, 2022 6:41 am

I’ve had a colostomy and ileostomy for the past 11 years. 

The first thing that people worry about is always having a washroom within 5 minutes just in case things start moving out of control. Unfortunately, for us, when the bag gets full there’s no more room to go and the added pressure on the pouching system can lead to a flange premature failure. Try to keep it as empty as you can. Sure you will head to the washroom a bit more often but don’t leave yourself half full thinking it will be ok. Just takes that one time when the ol pooper wants to make a run. I live in central BC in a small town that is 100 km away from any major shopping and entertainment. I’ve learned how to slow things down so I can travel those distances with less worry and I always carry 3 complete changes with me in a “man purse” lol. Eat smaller portions more often and reduce fluid intake about an hour before you want to travel or go out.  Because we have no spincter what goes in wants to come out. We have no way to hold it in. It does help when you add a bit of constipating food to your diet like cheese. If you get to know and keep track of public places that have single occupant washrooms you will worry less as well. 

You will get to know your body better as time goes on. Everybody is different, but there are a lot of things that sort of work the same for all of us. Give yourself an hour  after eating if you want to travel any distance and take in less water. If you happen to start to fill up in a restaurant politely excuse yourself and go do what you need to do. There is no need to keep your ostomy private around your friends. It’s not something you need to hide. It’s a medical condition that requires a bit of compassion and understanding from your friends. If you are meeting new people and eating out simply excuse yourself and go to the loo when you need to. Don’t panic. You will most often make it to the washroom in time. If you are meeting someone you have an interest in you will have to break the ice sometime. The sooner the better is how I feel about it. Many people feel like they have to “get to know” someone before sharing that kind of personal stuff. Why is that? Some people tend to think .. well if this person likes me for sure then it will be easier for them to accept my condition. It can go the opposite way too. That person may think.. why did you string me along and get me all into you before telling me. You can lighten things up by telling them you can get any seat in the casino you want ( vent vent ) lol. Jk. Don’t do that ! ! ! 

More and more people are finding themselves with an appliance. About 100,000 people every year get an appliance in North America. I’m into things a bit deeper. I have 2 appliances. They took a lot of stuff. Out of me. Bladder, rectum, gal bladder, right kidney ohh and my prostate. You know what that means eh?? You can’t get things up. I have that to frustrate me too.. but it doesn’t. You know what I say. A man doesn’t know how to be man until he loses the ability of his ta ta ta. Then he becomes a real man. 

Don’t fret. Take the time you need to get to know your limitations and then work with and around them. You are not any less of a person and people will love you just as much. Many will admire your courage m.

Mon Apr 04, 2022 4:49 pm

Hi Burro,    You received some great  advice and insights from those who wrote to you..I'm Marsha, and I've told my story so many times, others might  be sick of hearing it....   some things " don't change"....by themselves.  In your case , you need to want your life to change....for the better.  The doctors did their part, now, it's up to yo u....   I'm now  73, and I 've  had my ileostomy   for over 55  year.s.   since I was a teen of 15....      4 Years of being sick with ulcerative colitis  , was very restrictive.... I was out of school, in and out of hospitals, for new and improved treatments,  on all kinds of medications  ( steroids)   which made me blow up, and then " deflate" leavin g stretchmarks all over...arms legs, belly/ butt,  boobs...   When I was 15 & dying,  my paarents told me about t he surgery...( ileostomy)   and I couldn't believe t hat there was something that could be done to end my pain, and give me back my life...   I accepted my ileostomy gladly,  and the scars and stretchmarks,  and  stoma.....well, they're my battle scars of survival...   That first  summer with my stoma,   I got to go back to   the beach ( we were a beach family)    It was a long walk in the hot sand, to t he very dark ( no doors on the stalls) bathrooms...   So I used it standing up, back facing " out"..   I began socializing, dating, went to parties, and on hikes... ( and " pooped/  emptied my bag in t he dirt)..The following  year I w ent to a camp....and showered with everyone else....but wore panties....told them I had a hernia..    I changed alone at night....in the dark,  with only a flashlight, and the bees buzzin g around.   It didn't occur to me to ask the nurse to use the office bathroom...   Was I " afraid"..   Absolutely......but I was more afraid of  have more " lost time/  lost life...   Those lost years, set t he tome for all that was to come...    I married, had two children,   eventually divorced, wen t back to school,   for my degree,   became a teacher,   began to trave....in a 6 seater single engine plane,  / with no bathroom...    That was a challenge..   But we only had to land in a cornfield once.....for me..   I cruised, flew 19 hours to visit my son and his Family in Australia,...   I snorkeled, on the Great Barrier Reef,   in the Carrib.....and  around the world...    My worst accident, was swimming in the dead sea..   The high salinity of the water, made my pouch  pop off of the wafer...   I didn't realize it, until I was in the dressin g room...  It was a mess!!!   but I was the only one that knew about it..   Thank goodness for tape...  My ileostomy output, can't really be controlled, but I know people with colostomies,   can  irrigate, and t hen   control/ or time,   when they have out put..   Once a day/ or every other day...   Y ou may  still need a pouch/ or a small  " stoma cap"   but  you're output time would be predictable...   I just empty, / find a rest room, when my pouch starts t o fill up...   For you, it's a  personal preferance...   Think of all you'd like to do.....pick something that is a challenge, and go for it...   It takes some time to develop the confidence, but you will be living a fuller life...   Best of luck to you..   Marsha

  

Mon Apr 04, 2022 5:34 pm

Does this reply go to everyone who responded to me? I hope so. I have received a lot of information, encouragement, and a sense of caring from many people. Thank you all

I'm still not happy, I know I have to get a grip on this, not sure if I can. I will read and read again the many messages I received. I know it could be worse, I know many people have it a lot worse than I do. Hard to write how I feel right now. I have to cry for a while and try again.

thank you all again

Mon Apr 04, 2022 8:10 pm

Good Afternoon Burru, 

As I type, I'm right up the 101 from you.  I've had my stoma for just over two years.  I've returned to work, playing golf, socializing and enjoying my new life.  Dealing with UC for over 15 yrs "emergencies" got to be a daily occurance.  We have dealt with such problems as finding a bathroom quick, hoping that it was unoccupied, dealing with the pain and uncertainty if the bathroom was locked and being in a herd of people as you were leaving a concert and having the need for a bathroom quick.  How many times have you been in a car on a long drive and needed to find a bathroom within 10 minutes?  That had become a huge part of our lives for so long.  Guess what?  WE SURVIVED!  Life, at least for me, has become great again.  Sure there are some inconveniences such as setting a alarm to go off so I can check my bag and get up if it needs emptying.  Sitting at lunch with friends/co-workers when the "belly fart" happens.  The occasional strange smells that happen.  For me, this is so much easier to deal with than my past life.  What works for me?  I play the "What if" game.   What would I do if I were on a plane when a leak began?  What if I were on the golf course when my bag suddenly filled to capacity.  Am I wearing a one or two piece appliance?  If wearing a two piece, carry a spare bag and plastic bag. If wearing a one piece, maybe consider switching to a two piece.  Think of these situations and rehearse your response.  Think of things like the sensation that comes when you feel a clogged bag coming.  This will help you anticipate it.  Think about where your supplies are and how you would excuse yourself if you had to make a quick exit.  Think about how you would organize your supplies in a small bathroom stall in order to make a change on the fly.  IF that time comes, you will be able to react to the situation because you have played through it in your imhead.  This will help eliminate some of the panic that will set in.  Notice I said "some".  A sense of panic will appear but you will be able to remind yourself that you have a plan and can make it through.  

I mention that I'm from the same area as you to give you this observation.  When I first ventured out I was extremely aware of the bulge of the bag.  I wear oversized shirts which seems to help.  So many people in this area are in a big hurry.  Next time you're out take notice of how many people bother to make eye contact.  My experience is barely any!  Point being, if people aren't bothering to look someone in the eye, my guess is that they are not looking at my waist.  Also, only my closest friends and family know about my surgery.  If co-workers or aquaintances have noticed the extra bulge around the belly, no one has mentioned it.  It's your secret and no one else's business.  Chances are no one knows about your condition unless you have told them.  Hope for the best day but plan for the worse. 

Alot of good advice has been given to you.  As many have said, "Things will get better".  Trust that it will.  You were blessed with a chance for a better life than you had.  Take advantage of it!

Best of Health and a Better Life,

SharkFan

Mon Apr 04, 2022 9:27 pm

HI

 I went through the denial, depression while I was in the hospital. I’ve always been a fighter that believes adapt or perish…. Was totally grossed out by it. Wasn’t expected. ( was supposed to cut remove and put it back together ).  But it was cancer . And with 20 years of Crohn’s.  Wasn’t an option for the surgeon.  Yes I was terrified of it. No clue how to change and care for it… Even after several visits from the won nurse. I even had home care for some one to come over and hold my hand till I got the hang of it. Reason for the long story…. Was told I couldn’t go back to my old active life that involved lifting. Told certain foods I should stay away from and not eat.

Guess what I adapted not only did I learn to care for it, but learned to love it the plus side of it. I got myself a support belt and back to my old life style. Eating ???? I am eating everything ( very little if it could cause a blockage to find out ). Only time it is a little embarrassing is when it decides to fart in puplic… again figured out if I cup my hand over it it muffles the noise. I’m lucky to have a paste output and only have liquid when It’s diarrhea ( use Imodium) ) if liquid is your issue. Try products you add to your pouch and solidifies it !   Double your space easy… Been asking for samples every month. Trying different products. Some are a bust ( with my active lifestyle it only lasted hours) to the sensa mio  ( not sure if that’s spelled right ) which gives me 5 days !!

Accept it live life have fun surf the web… ask questions here… from companies that will not only answer questions but give you samples. I use different methods to empty. Tight space I would just sit and drain ( not being rude or ignorant.. drop your pants and underwear first ). Or I saddle the toilet backwards if I have space and don’t have to do the other ( leaving my pants up make sure you have paper first ) and lean forward…and in nasty restrooms I squat in front of the toilet…
Trial and error.

Good Luck 

BTW I’m at 1 year didn’t get comfortable till about 3 months.

Tue Apr 05, 2022 7:48 am

Your feelings are completely understandable...it takes a while to accept this life change...but you can do this.  Here are a couple of my tricks.  Always have a change of clothes in the car, and ostomy equipment. I keep a roll of paper towels in the car, too..just in case and plastic bags for disposal.  There are products you can put in your pouch to deodorize... and spray into a toilet before you empty, very helpful.  I will bring a jacket or sweater to 'cover up' the pouch puffing up.  I will stake out the bathroom and excuse myself to leave.  I lay my pouch more horizontally across my belly and wear a top or sweater that comes to my hips that will cover it. Lastly, for peace of mind, I carry in a small ziplock bag in my purse a new pouch, barrier and pair of undies...just in case.  Good luck....it gets better, promise.

Tue Apr 05, 2022 11:08 am

I am 6 weeks post surgery and still learning.   What I do know is that emptying a pouch is not for me.  I am using the sealed bags now. I carry in my purse a clean pouch, deodorizer and the “trash” bag that comes with the pouch order.  If I am out, then I can fairly easily pop off the filled bag, wipe the flange clean with toilet paper and pop on new pouch.  Put uses pouch in trash bag, tie off and put in trash.  If at someones house, I would take to outside trash just to be sure no odor.  I tend to think of it like a diaper disposal.  
I have not considered travel yet tho.  But I do enjoy social activities with friends and once summer is here will increase my activity.   I hope to golf in July.   I’m a little scared but as others stated below, once you do something, stay calm and breathe during a set back, you get through it and are better for it learning as you go.  Remember to laugh along the journey.  I tell non Ostomy friends I can multitask while having a BM whereas they are stuck inside a bathroom or porta John. Lol 

Life is short.  Live and laugh when you can. Find a good friend or 2 for support when venturing out.  Keeping it a secret makes everything more difficult.  Hang in there!

Note:    I do have some dark moments.  I refuse to let them take over as the ostomy saved my life.  

Tue Apr 05, 2022 6:58 pm

I am really sorry that you feel that you will not be able to do the things you like to do because of your colostomy. Well, here is what I have done with my ileostomy which I have had for over 30 years. I have traveled around the world. I can't remember all the countries I visited. I'll tell you some that I remember. There was South Africa, Papua New Guinea, Ecuador, and Madagascar to name just a few. Since I have not let having an ostomy stop me from doing things, Convatec, the company that makes the product I use, made a video of me. Here is the link to that video: Meet Phyllis Rovner w music intro outro.avi - Google Drive. Maybe if you watch that video it might make you feel better about getting a colostomy. I hope it does!

Phyllis Rovner

Gen
Tue Apr 05, 2022 8:09 pm

Hello Burra, 

I have only had my Colostomy since mid February.  I have named it "Colin" which for my mental health, was the best thing I could do to help myself.  

Colin is blamed for everything but also praised when he behaves.  He has taken the "me" out of owning all the embarrassing moments.  I am a little distanced from his mischievous, rat bag, embarrassing acts!!!

Colin saved my life.  I had a blood clot which blocked blood flowing to my bowels and killed off my colon and the left side of my larger intestine. 

My stoma is higher up so I seeing from very loose top no bowel actions every week.  Can't get into a rhythm so it's tricky.

I do get down sometimes then remind myself that the surgery saved my life.  

I started swimming again which is so lovely.  

This weekend I am flying to Sydney for 2 nights to attend a trade event.  I think Colin has much more packed than I have.  To be honest I am nervous as he is often totally inappropriate, especially when he blows raspberries when it's quiet. He picks the worst moments to misbehave. 

I can totally understand who so many stay home, it is hard to overcome the embarrassment but I keep thinking that it will get easier as I gain more confidence.  

We are all in a club that we never signed up for - each one is us had different circumstances but we all share so much. The kindness of the members in this site is beautiful.  They have our backs and I do feel supported. 

Take care and please private message me if you ever want a chat.  

Wed Apr 06, 2022 5:10 am

Hello Burru (& everyone who has contributed to this thread).

I just wish to thank you all for your contributions to this post as they are useful, informative, entertaining and also motivating for me as a poet.

In the coming days I will be posting some rhymes in the 'blog' section. These rhymes will be a direct result of the conversations read on this topic, which I would like to acknowledge.

Posting as blogs enables me to keep better track of what I have shared on this site, as posting poems on the threads means they tend to get 'lost' in mists of time and overlay of new posts. 

best wishes

to you all and - keep posting!

Bill

   

Sat May 14, 2022 5:05 pm

Burru... you have to start living again.  I have had my ileostomy for just over a year.  I go out to restaurants, bars, stay in hotels and enjoy myself.  Emptying your bag in a public bathroom is just like going to the bathroom.  You are using the facilities...simple as that.  If your bag fills up when you are out with friends, excuse yourself and go to the ladies room.  Always carry an emergency kit and lots and lots of gauze.  I had a bag rupture on a car trip to Canada.  Found an empty lot and changed the bag and my clothes in the front seat of the car.

Someone knocked on the door of my stall in an airport and asked why I was in there so long, I responded " I am emptying my stoma bag, if you like I will introduce you to Seymour when I come out.  "  Believe me she was very embarrassed and apologized like crazy.  

99 % of the time, everything will be fine...and you can handle anything that happens if you are prepared and keep your sense of humor.  Good luck and get out there girl

Sat May 14, 2022 6:11 pm

Hi -- Thank you for responding, it came at a good time. "C" gave me my "bag". I have been in remission. I had a CT scan to make sure all was well. They found a new potential issue. Friday I had a lung nodule biopsy, possible "C" again in new location. I will know results next week. I take two steps forward and 3 back. Many thoughts are going through my mind. I have not learned to accept the bag yet and now another concern potentially. I am getting tired. Thanks for letting me vent.

Tue May 17, 2022 10:46 pm

Hi Burra, I recently joined this site and have had a colostomy since the surgeons saved my life June 5th, 2019.  As other members have mentioned, having a stoma is definitely not something anybody would choose but it saved my life so you make the best of it.   I did switch to a 2 piece 7" bag that is disposable.  I am kinda odc and empty when I get the slightest amount.  I did have a situation with a faulty wafer one day soon after returning to work after treatment.  I was treating a client and had to excuse myself.  I luckily I had a think roll of clear tape which I used to patch the issue until my client left.    Since then I do carry a small bag in my car with pre cut ;flange, bag, wipes, paste.  It does get better over time.  I just remember all the suffering I went through prior to surgery.  I ordered a back brace last week and it is perfect for hiding my ostomy and surgery where my right abs were removed.  I didn't need the back brace for back issues, I just find it's a great decoy as the stealth belt is great but looks like an ostomy belt.  Everybody recognizes a back brace.   I can actually see myself going shirtless this summer while wearing the brace.  I plan to start irrigating once I can speak with my surgeon later in June for his approval.   I'd rather irrigate for an hour each day then wear a bag.   I see alot more freedom around the corner.  Maybe it's something you might consider as well.   Don't feel sad.  Life is all about perception.  You just need to accept it and start living your best life.  Go out for dinners, walks, ice cream cones, movies and anything else your heart desires.  Feel free to message me if you want someone to talk to.

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