Mina, 

I’m sorry you are having such a rough time. Especially if this was a choice you made to improve the quality of your life and you don’t feel like that is happening.  I am almost 3 years in and still struggle with the little beast. For me, I have found that my attitude about it all makes a big difference. It took me quite a while to find what appliance works reasonably well for me. I still have problems with leaks, but they are fewer and further between. 

When I can maintain my sense of humor about the whole thing, I tend to do better. I talk to Squeaky (my stoma) and believe it or not, that helps me too. His birthday is on the 18th so I will have a little party for him. I’ve actually been having a pretty hard time lately, so I’m hoping that will help a bit. 

This might sound silly, but try to think of ways your life is better now than it was before. Hopefully there will be some ways. For me, I don’t really have any ways my life is better, but when they did my surgery, I would have died if I hadn’t had it, so I try to remember that and be thankful for it.  It sounds like you are still grieving your loss, but when you can move forward to acceptance, things should get better. This is much easier to do when you find equipment that works well for you. 

Hang in there and we are here for you if you need us!!

noiseymina...welcome to VO!  You sound as frustrated as I was the 1st  3 years.  Why not let us try and help you tackle your issues.  Please give us a chance to guide you thru the difficulties your having.   There are solutions,  we just need to help you find the right ones. 

First, do you have a good supportive system at home? Having even one person to help encourage you goes the mile on bad days.  If not, this is why we are here and we are here for you!!  

Do you have times where there is no gas or bulging bag?   I found keeping a food journal helped me figure out what was causing my enormous amount of embarrassing  gas & this helped also cut down on noise.  For me it was bubbly Gingerale/ pop/ soda & yeast risen  breads of all things & my favorite veggies broccoli & cauliflower.  Giving up a few things but still having them here or there to satisfy worked well for me.  I still eat them but I take Gas-X an hour before & 4 hours after then for a day or two until I know its passed thru me & there's no more bloating.  Usually within 8 hrs because my transit time is so fast.  Also,   I was  able to replace yeast breads with crackers to avoid the gas. Have you seen the assortment of crackers out there? I enjoy trying the different kinds & testing different ones until I found the right ones for me as some did make me bloat like a hot air balloon ready for take off. 

I also learned from Eric that attaching the Osto EZ Vents made  letting the air out of my bag a dream compared to laying down, unrolling the end, release air,  roll it up again, wash my hands & repeat which I felt was constantly!   UGH!!! Buying the Vents meant I could have more free time and this meant I could leave the house comfortably releasing air where & when  appropriate.  I used to order them from my pharmacy but they charged 3 times what I pay now by going thru a medical supply company.  A few of us have good ideas for attaching them to  make it a quicker process then the company suggests.  We'd love to share the process with you as it helps free up your time putting them on also .   Depending on where you live, I can give you the website or phone number of the company I order my Vents from.

You mentioned that you feel having a pouch makes you stinky all the time.  This could be a food you eat causing a stronger smelling output.   Have you tried the M9 Liquid Deoderant drops to put in your pouch?? I use up to 22 drops or a few more until you feel your output is not as offensive to you.    Hollister will send free samples of M9, different Pouches to try &  they even have an Air Odour Nuetralizer in a spritz bottle for the smell after emptying a pouch. However I find the M9 Drops work great for giving only a very minimal order if any at all.   Feeling like you stink is a common concern but with the M9 drops, I'm sure you'll notice a big difference in odour.  One 8 oz.  bottle lasts me one month.  After my surgery I  found I was so much more sensitive to smell but realized too it was likely because  the outout issues were now in front of me & to me,  I felt they were basically in my face which made me more sensitive to smelling my output.  Poop smelled before my ostomy so yes, it will stink now but there are things you can do to get around this matter when it's in your pouch. 

Clothing is a huge pain for most of us  also!!  I ended up giving away clothing I really enjoyed wearing & slowly adding pieces that worked better with my pouch.  I learned I needed to wear pants that had an 18 inch rise from the center crotch to above my pouch by almost an inchso the waist band never moved my pouch around or rode down onto my stoma. I found  some pretty  tops to wear that never needed to be tucked in.  These tops also helped disguise my pouch when it bulged until I could get to a place to loose the air. Some tops  I found in the maternity  department. It doesn't matter where you find them just as long as you like them. I measured pants & top length & made sure they were long enough & if not I added some lace to them. I always carry a measuring tape in my purse now.  If pants or a top don't measure up I don't even bother trying them on. Read labels & avoid materials known for shrinking like cotton & wools can.  

There are all kinds of hacks & ideas we can help you with if your up to giving us a chance & tackling your issues.  I also found naming my stoma helped me accept not just my situation better.  Mine is named Rose but that was her 4th or 5th name.  I gave her a few not so nice or polite names for a while!  lol!  Did you know you can ask the pouch  companies to send you some samples to try untill you find a pouch that works for you the way you need it to??  There are several of us here willing to answer your questions &  help you get through this hard time in your  life.  

I'm going to be bold here, but have you considered you may be dealing with depression? You have been through a life saving & life altering surgery & if you are depressed you need to address this also. There is no harm or embarrassment in admitting you may need a little help in this area.  My hubby had pancreatic cancer & died a short 5 months after my ileostomy. He was my only true support.  I eventually recognized I needed some help with depression & it was a good move on my part.  Seeing your GP & getting some help in this area is not a shameful thing.   If you feel your family doctor isn't listening to you it may be time to find one who will.  I appologoze for the length of this but sometimes it's needed to guide folks ahead instead of being stopped or stalled.  I hope your reading the replies here & will give us a chance to get you eventually mire confident &  out of your home & onto living the new normal healthy life most of us are leading now. 

If you like, feel free to start your own new forum & tell us your story & ask any questions or tell us how we can help you. This is what we are about here.  We want to help you Mina, please let us try. We all have or had an ostomy or had one so we understand your frustration .  

dear LK, I just had to say thank you for your honest words, I dont have a life threatening condition, I have IBS-D, it has controlled my life for over 30 years, I am waiting to speak to a doctor on the 2nd of August to see if he will refer me to a private consultant to discuss the option of ostomy surgery, this is drastic, but im not living, only existing. my husband had cancer of the bladder 5 years ago, he was extremely lucky, had his bladder removed and part of his bowel was made into a Neo bladder. ive not taken this decision lightly, my husband, daughters and parents back me 100%, I understand that its going to be hard,ive done tons of research, but its people that are willing to share their very personal experiences that make our journey slightly easier and less scary, so thank you. x

Nicky,

I support your decision 100%  I, too, had IBS-D; it wasn't life-threatening, it just didn't allow me to have much of a life.  My doctor tried several other treatments to try to help me because major surgery isn't something you just jump in to.  Like you, I did a lot of research and came to terms with the idea of even having a colostomy.  I had my surgery on March 31st, which is a day I will now celebrate!  I haven't been sick AT ALL since the surgery. I thanked my doctor for improving the quality of my life.  Best, best , best decision I've ever made regarding my health.  And really, the doctor has got to know how bad you feel if you are actually asking for the surgery!

I wish you all the best, Alida and Sqiggy

Very good post. Choose life with an Ostomy or death. What a blessing that medical history has found a way to deal with colon issues. There is so much good information out there. I don’t have a stoma but I help my brother with his. It is a totally life saving surgery. Doctor was surprised that the surgery was success. He called it a miracle. I am thankful everyday for the people who have survived their colon issues by this surgery. Please, try to be positive, positivity goes a long way. When your in a better mood things go much more smoothly. Try to smile and think of others in a much worse situation. You have been given a new life by doctors who chose this profession to help people like you. Blessing to all.

They do take up a lot of time. I try to control my eating more so that I can control output more. Then there are skin issues.. In time it gets much easier, I guess; I'm supposed to get a reversal though it's been 6 & a half months and I still haven't.. Hope you're doing okay!

"● Sh*t bombs aren’t fun!" etc.: Reason #6 for not waiting to empty bag. This was so funny, even though painful.

My Rosie Roma stoma just turned 1, I just turned 73?. Your videos have been a God send, and I really appreciate you!
I recently switched to horizontal pouching and I’m trying to determine what a 1/3 full pouch would be. As it is, I empty every 2-3 hours, high seems like a lot.
I have a lot of diet limitations, gastroparesis, type 2 diabetes, high cholesterol, and I am a kidney stone maker. Even nutritionists are puzzled as to what I should eat to get proper nutrients. So, my wondering is are: is q 2-3 hours to frequent & would it help to take something to slow down the output (Not very thick). I primarily eat pasta, potato - no skin, thick puréed homemade soup(gotta get some veggies!), fish, chicken & occasional burger.
I would like your ideas, please.