Hello from a New Member with Ostomy Insecurities

I am new here, and was hoping to find others with ostomy insecurities like I have.  So, hello to all fellow ostomy members! :) 

Hello. I think you came to the right place. You will take charge more and more each day, no more insecurities. Your stoma will become routine.

Lots of old posts and blogs to go through. Try the chat room. It is not active at times but try different times of the day and someone will chat back.

Hello, I am new here, but have found much support. I am still learning about my ostomy and have much hope. I wish the same for you. Need support? You've come to the right place.

Best wishes, Glenda

Greetings and good days ahead, I've had my complete proctocolectomy with ileostomy since 1999. You will manage, become so proficient over time you'll begin to live like you don't have one, second nature... Smile because it will melt out of your mind eventually, and you will conquer... over time.

Hello ellkay. Greetings! you will find all sorts of people and posts on here from those with insecurities to those who have mastered the problems and frustrations.  I hope you get waht you are looking for  and look forward to hearing from you in   the future.

Best wishes

Bill 

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hi Ellkay, welcome! I am fairly new as well and have received lots of valuable information from folks on this site! They are awesome. Ask the questions you would never ask someone in person, sometimes even your doctor, to people here! Nothing you feel or is happening in your life is taboo! We have all had the same things happen to us, the same embarrassing moments, and basically the same path to understanding our Ostomy, conquering the obstacles around it, and getting your head around it!

Puppyluv

Hello, and thank you for the warm welcome! :) I think the biggest problem I have is the aftereffects from the full resection, like incontinence. Or the "unexpected" sounds/odors that suddenly come out of nowhere. For the first time since my surgery, I had a very uncomfortable and embarrassing moment last week at work. I had a 'release', and it was one of those 'silent killer' ones. One of my guys came out of his office and said, "What is that smell?" The other person I was talking to also said, "Yeah, I smell it too." Then he says (the first guy), "It smells like a dead animal!" I just said, "Well, they are doing some work on the other side," and then got up and left. I wanted to die a million times! Thank goodness it was time for me to go home! Anyway, I've also tried to explain to my Level 4 Director that I am NOT comfortable being in meetings and why, but he doesn't seem to care. I'm half tempted to report him for not understanding my medical issues. :( Anyway, I know others probably have it worse than I do, but when things like this happen, you do feel alone. Other than that, I've accepted my ostomy. It saved my life, so no issues there. It's the aftermath that bothers me more! LOL!

Again, thanks for helping and the warm welcome! :)

I know it is sad that you had to suffer through that. I have not been around a lot of people who know about my ostomy. I am a very private person, so I do not share my health issues unless it is a need to know. Sad, but that includes family. I am sure that circle will expand in the future, but hopefully, I will have this under control by then. Not sure there is any answer to the gas and odor except diet. I do use a lubricant with odor control in my bags. It helps some. I have also tried baking soda. It gets kind of heavy. You can only use a little.

I felt alone until I came on here! Believe me, we are all in this together!

Puppyluv

Just a few people in my department know I actually had a colonostomy. Most only know I had cancer and have been very supportive. I don't get pitied, and no one treats me any differently, which is the way I want it. The coworkers who made the comment obviously didn't know I had an ostomy, but better yet, didn't know it was me the odor was coming from. Thankfully, that was the only time it was that bad! I've used lubricants, charcoal, etc., but nothing really seems to help. I take one laxative pill daily to keep things normal, and that helps a lot. It's the gas part that is so unpredictable. Before our surgery, we could, for the most part, feel the "gas" coming, and could usually stop it. But with this type of surgery, you can't control it. I think I will try taking a few Beano/Gas-X tablets before each meal to see if that will be a good preventative. Trial and error, right? LOL!

And puppy, even though you are a private person, and I understand that, sharing, especially with close friends and family, really does help you get through this, and not feel so alone. I think they would want to know, too, so they can be there for you when or if you ever need to talk and a shoulder to lean on :) Just a thought for you :)

I had my colostomy Tuesday and I’m already home healing. It’s weird having your intestine outside your body and and bag attached but with each day I’m healing and learning to be thankful that I’m alive and kicking. I don’t know if I’ll have the BCIR procedure done later on. I’m taking it a day at a time. 

ellkay,

Welcome to the site! Yes, you will find an abundance of support on this site.

Having a colostomy, have you tried irrigating? I myself have an ileostomy and cannot do that, but from the colostomates on this site, irrigation seems to resolve a lot of issues. I'm sure one of our colostomates will chime in here.

Bain

Hi Ellkay, Bain is correct! I have been very lucky with all the advice and encouragement from folks on this site! I just started irrigation. This will be my third day. Guess it is going okay. I see this as freedom once I get my colon trained to go at the same time every day. Anything is better than leaky pouches! Lol. Glad to answer any questions, and I posted pictures on my profile of all the stuff to use in the irrigation kit, as well as some sample caps that I am not able to use yet but hope to replace the bag with these soon.

Puppyluv

I can relate. I had my daughter, 5-year-old granddaughter, and 3-year-old grandson here for two weeks. I had a rather large gas output happen. All of a sudden, I hear my granddaughter scream out, "What is that smell? That's the grossest thing I have ever smelled!" My daughter quickly checked my grandson as he is being potty trained. I kept quiet as I wasn't in the mood at the time to explain everything to a 5-year-old! Anyway, it was somewhat funny. I just find it better to keep my mouth shut unless I am one-on-one with someone. In time, you will get used to everything. In regards to meetings, if that is part of your job duties, I would suggest you hit the bathroom a few minutes before to empty out and add some pouch deodorant before you go to the meeting. I find spritzing a little perfume on the bag cover (if you have cloth covers) helps a lot. Good luck to you!

Hi - I had lots of insecurities in the first several months, but things have gotten a little better with time. I'm in the 10th month of my colostomy and am getting experienced at caring for it without total anxiety. Still worry a lot, but able to function more or less - go to Pilates, eat lunch out with my friends, hang out with my family, play in my art studio. This site has been a great help to me; there is so much support here. Best of luck to you and write whenever you feel like it.

Hi Ellkay, I had the same problem as you. I use M-9, which is a deodorant-type product that you put in the bag to keep the smell down. As for the noise, well, it still scares the shit out of me when I fart off. (Scares the shit out of me!!!!!!!!!!!!) After a while, you'll sometimes feel it coming on and sometimes not. I've been told, "Why not put a whistle on it!" But I find myself with my hand covering the thing to silence any surprises. What you'll need to do is watch the kind of food you eat, and don't bend over or stretch too fast. Time will help you get used to a lot of the things that will happen.

Hi Ellkay, I have heard that taking chlorophyll tablets from a health food store will eliminate odor, but I haven't tried them.

Hi to all of you who are new to this post, welcome to MAO!

Noise and odor are to me another part of what we deal with, and oh yes, I have had many embarrassing moments in my years with my ostomy. I don't have too much problem with smell when I have my pouch securely on and rarely do I burp it in a public restroom. Noise, ugh, that's the one that can be tough for me. I train all the new folks who join our company, sometimes a dozen people at a time. We spend 8 full hours the first day together. Sometimes I choose to tell them up front that I have no colon and no control of the sounds that my body makes; this way, if a surprise does happen, I just say excuse me and keep things moving. Other times, I get lucky and leave the room for a minute if I feel it coming.

It's just a hiccup in my day. Covering your stoma helps, but I realize everyone has gas at the wrong time sometimes.

Hi Ellkay.

Welcome to a sister/brotherhood of people who have and are walking in your shoes. I personally have had Rosie, (my stoma) for 4 1/2 years now. Yes, it is not only life-changing but most assuredly life-saving for a great many of us. For me, it was rectal cancer. There will be bumps in the road, but please know you are most definitely not alone, there are no silly questions, and I guarantee somebody on the site will have an answer. It does get to a point that you will get o

into a routine and taking care of your needs will be second nature. Take care and keep looking ahead; each day you will get stronger and have the confidence to do everything you did before. Sincerely, Rosiesmom aka Gail

Hello and welcome.

My very wise and amazing mother told me something that I repeat when I'm having a pity party or feeling bad about myself and my situation. "It's a trade-off, living vs. ostomy."

Very wise Mother!

My very wise mother always said, "There is always some poor bugger worse off than you." Lol, I grew up in Scotland. However, there were never truer words said. There always is somebody worse off. Keep being positive; it will stand you in good stead. Never look back; always concentrate on your great future.

Elkay, have you tried covering the filter prior to a meeting? I'm always self-conscious when I'm in the office or in meetings. Prior to my surgery, I heard comments all the time about the smell in the ladies' room. After I told a couple of people I have Crohn's, that seemed to die down. But it still hurt, seeing I was just trying to survive. Sending hugs your way and letting you know you're not alone.