What's New

I woke this morning so full of love.  Thinking of those that were placed in my life that loved me.  Which definetely helped me become the person I am.

Deaths: there so many kinds of feelings that follow after a death. Each one is different and yet take a piece of me each time.  Thirty nine years ago, I lost my son. "Oh My" I feel that lost

as it was yesterday. I'm thanful to live. but nor will I never forget those that are gone. I'm now facing yet another death- a marriage of 34 years, not counting the time we dated.

We as ostomates experience death- when we lose our organs. I read your posts and I feel your pain, you not alone.  Also a different feeling-yet a loss.

Listen this is not a goodbye,  just  expressing what I feel.  I want to thank those that have touched my life in so many ways. I thank you for your friendship and guidance.

As we approach the holidays, enjoy your families, friends etc. (Embrace Life)

Take Care

Angelicamarie

My surgery went pretty well.  It will be 4 weeks on Nov 25th.  I want to go back to work but the boss said I have to have a full release with no restrictions.  The doc said I can work with A 30 pound weight restriction until Dec 10th.  Do you think they could make a reasonable consideration for two weeks??  NO!  All I do is drive patients to their doctor appointments or take them out for groceries or socialization!  They could give me ambulatory people until the 10th!!  I hate sitting around here just watching TV twiddling my thumbs!!  On top of that, my right thumb is still numb!! I was hoping it would have gotten better but it is the same.  My ambition is so low right now and my depression, SAD, and PTSD is really elevated.  If I could go back to work, I could get that all straightened out and back to normal again.  The other day, I sat here and cried half the day.  My doc said that they felt I was having a delayed reaction to the anesthesia.   She said it can stay in your system for a while.  I see my PTSD VA Therapist soon so I will be very glad to talk about some of this.  Thank you all for letting me vent!!

Hi.  I have a question for you single ostomates out there who have tried the dating thing.  I haven't gotten up the courage to do that since my colostomy and I'm not sure I ever will.  Could sure use some input on the subject.  When do you tell a prospective date about it?  My gut tells me to put my cards on the table and tell them immediately, thus giving them plenty of time to head for the hills.  But if you do that, you'll never meet anyone.  Should you wait until the first date and then tell them?  Still plenty of time for them to back out with no hard feelings.  How about 2 or 3 dates down the road?  Maybe you'd have a chance to get to know and like someone and vice-versa, but hurt feelings would ensue when they can't handle it.   I'd love to hear some of your experiences, both good and bad, and tips on how you deal or have dealt with such a thing.   I'd love to date a guy who also has a colostomy, but on this site they all live a thousand miles away...so that's not gonna work.  Any advice from anyone on any of it?

I heard about this 6 year old boy standing in the church lobby.

He was staring at the plaque on the wall, it was filled with names and small flags beside them.

He asked the pastor-what was all the names for?

The pastor explained how that was a memorial, for all the young men and woman that died in the service.

The little boy stood there silently , so concerned.

He finally looked up and asked the pastor,  was it the 8:30 or 11:00 service.?

I heard it from a speaker and wanted to share, hope you enjoy it.

Angelicamarie

Hello my fellow ostomates!

When i got my ostomWhen i got my ostomy i became very self conscious .i didnt think i would ever find someone who would accept my situation and love me despite the ostomy...to think me beautiful regardless of it. I gave up on the possibility of dating altogether  Well...after 10yrs i have finally found a man just like that!

Shane is a wonderful man. We have been together for 3 months and in that short period of time he has actually forgotten that its there! He reminds me to emoty it if im not paying attention. He has also watched me change the appliance. Its awesome.

We have had 2 times when the ostomy leaked at the most inopportune time...and when that happened i became really embarrassed. How do you guys handle that?

Im still struggling with my body image...and i am wondering if any of you that read this handles that. Hiw have you fully accepted that it is there...that it is a part of you? Hiw have you accepted that your body has changed forever? If you have a partner how have you managed to believe him or her when they say that you are beautiful despite the bag?

I look forward to your answers and any advice you may have!

Hi there ,   Well here we go again !!  I was in St Vinvents Hospital in the past two weeks for my expected surgery. The proposed surgery was to remove what's left of my Rectum, Sphincter and the de-functioned J-Pouch which is still in thee.

   I got a call at 11 AM on Thursday to be at the hospital by 7 AM the next morning. There had been a cancellation and they had my pre-op workup already done so that was OK. I got there early , before the staff and waited. Pretty soon they had me prepped and sedated for my 7:30 surgery. 

   I'm on the other side of Ireland which is 3 1/2 hours by train and another hour long bus ride to the hospital so I went the night before and stayed with my Brother near Dublin ( 1 1/2  hours to the hospital from there !!  I was up at 4:30 getting showered and looking respectable for the man with the Scalpel. 

    I was all ready to wake up and have my Butt sewn shut and expecting a tube soming from there. I felt no tube and I was not in the ICU so I figured that something went wrong !!?? Not until about three hours later ( when I really woke up ) did I confirm that no work had been done on the intended surgery.  

   The problem was Scar Tissue . Apparently the scar tissue is covering/ smothering my Organs, including Bladdar and Small intestine. They said that they could not even identify the Bladdar and even less so for the small intestine. They thought it was too dangerous to continue and after poking around in there they just closed me back up again . I will go back in four weeks to see my Principal SUrgeon and see if they have come up with any solutions. Right now one proposal is to install a Stent in my Urethra to prevent a Pee Blockage when my Pouch gets infamed ....this causes Pouchitis which in turn causes Prostatitis which squeeaes on my Urethrta and stops my Pee . This happened recently and it took ten days in hospital to get the infection doen. 

    Right now I'm resigned to Not continuing with this planned surgery. The risks of having both a Urostomy AND  Short Bowel as well as a Ileostomy does not appeal to me right now.

    Has anyone else experienced this problem and did you find a solution ???

Thank You All  XOXO  Eamon .

I'm not an Ostmomate but my boyfriend is.  I met him 3 years post-op and we've been together almost a year.  He and I have been to several social events together and although we both enjoy ourselves, I can see that he is never as relaxed as I am.  I was hoping you might shed some light on how your Ostomy has affected your social life.  And if you have any suggestions about what I can do to help him, I'd appreciate that advice too.

Do you feel uncomfortable or worried at social gatherings?  Do you abstain from eating at events to avoid having to deal with emptying?  Do you avoid social gatherings altogether or limit the amount of time you spend there?  Or do you even worry at all? 

Hi, so I am here to say goodbye to this group which I love so much. My husband says I am in this group every 2 seconds and he can't stand it anymore. Well we argued and he told me to choose between him or the group, therefore I'm gonna be offline for a couple hours while I pack his bags and send him on his way I will be back shortly

G'day All,

My main aim for joining this forum was to discuss daily/weekly living with a stoma and various techniques employed to manage. Chances are this has been done before here so apologies if so. I hope by detailing some aspects we may all learn something from it - especially me from others and their techniques or possibly questions.

I had bladder cancer nearly 3 years ago so out came the bladder/prostate combo. A pretty easy decision for me to make. Have a stoma or die very much sooner. That was my first ever time in hospital in over 70 years.

I was initially provided with Dansac convex bags 'cut to size' hole and after a month or two I went to pre-cut 25 mm (1 inch) as my stoma shrank a little. I still use that size.

For several months I had reddish skin over the bag adhesive area. It seemed that I was a little allergic to the adhesive. Eventually and slowly that abated and I have no further skin issues, other than pain from hairs pulling when I remove a bag. I have just a hint of what you ladies experience with waxing.

In the early days I used a spray-on adhesive remover and worked it around the periphery. I quit that yonks ago as unnecessary. I can't remember all of the old practices except that I would always do a bag change laid back in a chair, but never standing. My wife always assisted and still does, but only to place the new bag centrally over the stoma as I can't see to do that without a strategically placed mirror to get an overhead view. I know there is a 'bending the bag' method but I am yet to test it.

(1) What issues remain today I hear you ask?

Firstly, leaks are rare. I think it was 3 in 3 years of which 2 were in bed. Generally related to physical exertion e.g. down on my haunches, say inflating vehicle tyres or changing wheels. I still do a lot of that at home but remain very mindful of my position to minimise stressing/stretching the bag area.

Next issue is the Dansac adhesive squeezing out around the edges of the bag adhesive flange or periphery. I think you guys may call that part the barrier. When that glue sneaks out a couple of millimetres it hardens in the air and forms a sharp edge that can irritate. See pic. All I can do is try to peel off that sticky-out bit. Sometimes when I am working in my shed the very edge of the flange may lift from my skin for say 5 mm towards the stoma and again the glue hardens. Then I use scissors to trim off that hard bit, thus slightly reducing the glued area. Also on skin folds the flange can develop a big crease, much more so than in that pic. Often I've used scissors to cut along that crease about 10 mm and then overlap those two parts to take up the slack and remove the crease. This not to make it look nice. It is to remove that fold hardened by glue and can irritate me.

The last annoying thing is in warm and hot weather. The Dansac bag has a material-like isolating membrane between the plastic bag and my skin. Obviously this is to prevent direct skin/plastic contact and subsequent sweating. This membrane is totally inadequate in hot weather and in no time there is so much sweat between me and the bag you would swear it was a leak. A quick finger wipe/smell always proves no leak. So what I do is get some thick paper hand towel and fold it in half then poke one end into this membrane pocket that is open higher up near the stoma and then fold down the paper between the bag and me. It can't move. Then the paper towel can absorb a lot more moisture.

(2) Daily routine.

Usually around 0500-0530 every morning we flick on the bedroom TV and I hop out to disconnect my Hollister urine night bag. It usually contains 1 to nearly 2 litres and that is full. The bag lives in a bucket as it must as a night bag can leak slightly. I used to have an issue of where to hang the end of the bag hose to prevent it from falling down and urine running out so I fitted an elevated mount on the bucket where I can hook the hose end. See attached pics. I replace the night bag about every 10 days. .

I've always had a weak stomach and never changed a nappy (diaper) in my life despite having 3 kids. The thought of showering without a bag fitted makes me ill. I just couldn't cope with the idea of having an out-of-control stoma sharing my shower, especially the towelling off phase. So I empty my bag in the dunny (loo, toilet, bathroom) before showering. In the shower the bag gets saturated but I don't care. After drying me all over with towels I then pat dry the bag wet membrane with paper towel and complete the process with my wife's hair dryer to ensure everything is dry as a bone. This takes 30 seconds.

Once dressed I empty the night bag into the dunny then take it to the laundry, connect it to the laundry trough tap (faucet) with a matching fitting I made up and force-flush the bag with water whilst shaking it about and when satisfied empty it there. I never use vinegar or any cleansing product. Then I hang the bag outside all day to dry.

Through the day I would drain my Dansac bag around 8 or 10 times. I don't want it too full. The bag has a tap at the bottom and after draining I dry that tap hollow tube with some dunny paper rolled up like a cigarette. I wish someone made these things pre-rolled. I never use the provided tap caps rather than drying as the caps are concave and would always hold some urine when removed.

(3) Bag change routine.

Always done around 0700 in the morning and every third day. I have laid out my equipment the night before. That morning I skip any early drinks to minimise stoma output. After showering and half dressing I put a regular body heat-pack thingie in the nuker (microwave) while I do my final bag empty. Then the new appliance bag is placed between ally (aluminium) foil to prevent it from fogging up as the heat-pack always contains a bit of moisture. This warming process is to soften the appliance adhesive and ensure a quick bond.

I lay back on the bed with my gear beside me. I prefer the laying position (head/shoulders on 2 pillows) to keep my belly horizontal to more readily control any leaks should one occur. I use two adhesive remover wipes. Firstly I pull the bag flange outer edge away from my skin only about 2 cm (3/4 inch) all around the periphery. Then I use the first adhesive wipe to de-glue myself around the edges where often there is a bit of dried glue harder to remove. I do this firmly and safely knowing the stoma is still sealed by the bag centre ring of adhesive.

Next with several pieces of pre-folded hand towel at the ready I peel the bag away completely and plonk paper towel on the stoma whilst I have a quick check at the inner adhesive area looking for potential leak signs. I place the old bag in the nearby collection container. That is merely an old ice-cream container fitted with a small single-use plastic bag. Then I use the second adhesive remover wipe around the inner stoma area to clean that up. Another piece of folded paper towel to assist the cleaning process and using the firm corner of said folded paper to run around close to the stoma removing any glue remnants.

Next I grab a baby-wipe (moist soft paper thingies meant for cleaning babies) and clean the entire appliance skin area and especially the stoma proper. Sometimes I draw a little blood spot if a bit rough. The third piece of folded paper is used flat all over to dry up the baby-wipe dampness then I quickly apply a skin preparation wipe whilst my wife has grabbed the warmed new bag and ready to fit it. The skin prep stuff dries in a few seconds as I keep an eye on the stoma with paper towel ready. My wife then plonks on the new bag carefully aligning it through the transparent plastic. I place a warming hand over it all and give it a minute to stick 100%.

(4) A close shave.

An annoying thing about gluing stuff to your body is removing it without pulling on dozens of hairs. This hurts in proportion to the hair length. A pity that body hairs are not like grass and will not grow when covered. So these little mongrels persist and grow everywhere under the bag adhesive area. In the early days my wife would use a razor blade and soap to mow my lawn whilst I remained alert with paper towel on stoma patrol. Then she bought me a very small electric shaver, I think intended for women. It runs on a single AA battery. Now I can use that in one hand whilst towel ready in the other. I very carefully mow quite close to the stoma but mainly around the larger glue area. This mowing is needed about once every 4 bag changes.

(5) To finish off

I use pre-cut single-piece bags from transparent plastic as an aid to accurate visual alignment when fitting, but more so because I want to see what is going on in there. Any signs of blood for example. As the short piece of intestine used to make the stoma thinks it's still in the gut it continues to make mucous and this appears around the stoma mouth looking just like a smoke ring. When it sinks to the bottom of the bag it can sometimes affect the drainage when the tap is opened. It may even block 100%. The simple fix is to rotate the tap shut then open it again. This seems to have a shearing action and the blockage is cleared instantly and 100% of the time.

If I find my bag flange (periphery of the adhesive area) has lost some adhesion due physical activity I stick on Dansac X-tra strips. These are like adhesive tape but curved like a banana and cover about one third of the flange circumference.

The adhesive remover wipes and skin prep are Smith & Nephew but there are other brands. Night bags are Hollister. None of these brand mentions are endorsements. They are merely what I was trained on by my Stomal Nurse. Chances are there are other brands that do a better job but I'm not game to try them. The old dogs new tricks syndrome.

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Definition: the right to express any opinions without cause or restraints.

Do the administrator on this site say it's ok? I dont think so! Of course the site allow one to express their feelings.

Almost 2 years ago, I was in the chat room. There was a conversation between two members. One was quite voiceful in expressing their distaste., the other listening intently. whether he liked it or not, he showed a great amount of respect. I learned a lesson that day.

Some  say were glad we found MAO, because non ostomates are sometimes cruel in our daily walks. "NEWS FLASH" the same people outside of this site are here. Its like watching an anchorman/or woman with a panel. the panel sometimes use the platform to sell there books, pat themselves on the back, and sometimes take over the show. forgetting their not the anchorman/woman.

No everyone don't comment, let's face it , we all had different problems that resulted in surgery, be it colostomy or ileostomy and urostomy. If you read some profiles, both men and women dont want women to comment period.  Which is their choice but keep that in mind before commenting.

The reality is we all are diffrent and our reason for joining is not the same. No doubt about that! The common denominator is the ostomy, some connect with others, some dont. However when it refers to their particular problem they do comment. Im far from an expert but will glady support and share my journey.

Take Care

Angelicamarie

It’s actually an old song, but this song has a message and has a pretty good beat . I must agree -dig me for who I am.  Heavy D & The Boyz- somebody for me/Utube

Hi prior to surgery in Jan 2018 i was a size 10 then due to ill health and an over abundance of steroid medication i put on 5kgs in weight. I just cant seem to shed this weight conventional dieting is no good for me as i am limited to what i can eat and when i do eat can only tolerate child size portions my 5 year grandchildren eat more than me. 

Does anyone have any suggestions i cannot cope with my body image never mind the ileostomy which has put so many inches onto my hips. Comptemplating joing a gym and the services of a personal trainer.