Why I became a member of meet an ostomate (MAO)

On the morning of August 23 2015, I woke up with a ostomy. Prior to leaving the hospital, I was shown how to prepare and change my appliance. However this surgery changed my life.

I found an ostomy support group in Springfield , Ohio, The meetings were held in the evenings at 7:30 pm. I attended one meeting and the subject was how great their surgeon was. That"s not what I wanted to hear nor needed at that time. I never went back, the drive was quite far and I was afraid an accident would occur (poop).

By mistake I stumbled upon this site.  As I read the stories of men and women, I knew I wasn't alone.  Some of my concerns were addressed just reading their stories.

I lacked confidence because of the ostomy.

Would I still be attractive to my significant other?

How could I wear nice things and still conceal my pouch?

Would I still be sexually desirable?

I thought of so many reasons why I joined but the things listed above were some of the concerns.

The bottom line is, I needed support and thats what (MAO) provided for me.

Why did you join?

Respectively,

Angelicamarie

Hi Angelicamarie,

Well I have seen your post and I've also seen u have commented on some I have put before... I joined this site for comfort and to see if I could get answers on things I was going at the time. I thought that after all my surgeries and having no bags I would be OK and not need support anywhere but I was and am wrong. I feel as if I need it now more than ever and I am so comfortable coming here and reading stroires same as you. We are not alone and I'm glad there are good people out there that we can all cope with. Have a great night... 😊

Hello Angelicamarie. Thanks for yet another thought-provoking post. I was tempted not to reply to this because I am not a 'member' in the sense that I do not pay subscriptions. However, over the years I have felt that I 'pay my way' in terms of literary input and this is often recognised by admin when they make me an honorary member for the months when my posts have been most numerous.  The reason I first contributed to this site was because I was struggling with the new stoma and in those early days I was writing rhyming verses to help clarify and manage the emotional and psychological side of the experiences. Where else could I share these rhymes? Except maybe, with people who might be experiencing the same sort of things and, therefore, might appreciate what I was going through and also the rhymes which tried to capture the accompanying feelings.  My motivation for continuing to correspond on MAO have changed from those early days but that digresses slightly from your basic question and could be a subject for another post.

Best wishes

Bill

Bill... thanks for sharing,  appreciate the support!

Angelicamarie

Babydoll... excuse me for not responding to you first, I had no idea you had commented. I do appologize.  Thanks so much for sharing and commenting. Your so right and we’re not alone. 

Angelicamarie

I joined for the same reason as you bottom line...support.  I stumbled on this site by accident when looking for particular supplies online.  After reading only a few posts, I knew I wanted to find out more.  There are no local support groups for ostomates around this territory and the hospital never mentioned any online support groups either.  I was totally in the dark as to finding anyone to talk to about the issues I had...other than the stoma nurses.  They were okay, but let's face it...they don't live with what we live with..so their advice is extremely limited on many things. 

I can see why you didn't go back to the first support group.  If they were all talking about how great their surgeon was, I would have run out screaming.  My surgeon was NOT great.  He screwed it up big time and I have a feeling that that particular group would have not been the place to "vent".  lol

On this site, you can praise OR you can vent and you will always find people who have been in the same place you are and understand what you're saying.  This site has been a blessing to me.  It really has.

weirdnewlife... appreciate your comments and support.

Be safe

Angelicamarie aka Angel

No worries... 😊

Hi Angelicamarie,

I joined because I didn't have a stoma nurse and I had a swollen stoma. I was not sure why or if it was a serious problem. I don't like to sit in the doctor's office. My husband found MAO and I had found a different site. This one had answers that I could read right away without any fees. Courious about what else might ly ahead I joined to see what I could learn. That if I can remember was in 06. Now I'm just addicted.

Mrs. A.   Thanks for sharing... I too wanted to learn and I did and continue learning. I believe I'm addicticted to the site also. ( smile)  Thanks again!

Angelicamarie

Question for you about your post: what are the problems you are having with no bags? Did you get reattached?

barbara

I joined because I am having my ileostomy the Monday after Thanksgiving.  I am scared, confused and need guidance.  What is the worst part about having an ostomy bag?  What surprised you the most?  What did no one tell you?  Do you feel better?  Any answers appreciated.

Grammy... your responding to the wrong post.

Angelicamarie

Gidget.. I think its natural to be scared of the unknown. I can only speak for myself. the worst part for me was the addition to my body. also you have no control over your intestines. if one dont have an ostomy they go by what other patients say.  I have good and bad days.  I had my surgery after experiencing a blockage in my small intestines.  The surgeon slip of the knife, caused me to have chronic diarreah.  It was going to cause septic or death. It was a life saver for sure, I have come to terms with my change. (Im alive)  learn all that you can, but dont beat yourself up. I found this site by accident. Listening to others have helped me with my journey. Good Luck!

Thanks Angelicamarie!  I hope you are having a good day :)

Oops! I’m still trying to navigate this site. 

Hi there I’ve had two ileostomies in last year. First one for 4 months but it kept retracting and leaking. They then re-fashioned it and at first it was ok (ish)...but now it too has sunk in to be nearly flush with my tummy. Mystoma nurse thinks that I’ve exhausted all different combinations of bags and seals etc., but still I have sore bleeding skin around stoma and leakages....at a meeting the two main surgeons (one did both mine) said that I need it doing again sooner rather than later....I still need to have my internal J.Pouch removed early next year...has anyone else had more than two failures ? What went wrong? Is it better now? I need a better spout, longer stoma ......then hopefully I won’t leak and feel so sore every time a motion passes out into bag..I feel it, it is painful....I hate it.

Taradale... Hello, reading what you wrote, you should post this yourself.  You responded to my post which can’t answer your questions . I know nothing about a J.Pouch nor can I give you medical advise. If you post this I’m sure someone will chime in. So sorry that your enduring such things.

Angelicamarie

Hi Gidget, I've had my ostomy since March and am happy to say I'm having reversal surgery Nov. 1. Just a few things I hope will help. One thing that I had to deal with was that I have this thing protruding from my body, it was weired to see something that should be inside me on the outside!  Second was the smell! Oh that was probably the hardest thing to get used to. Although I really don't know why I didn't think it wouldn't smell bad! It just didn't occurr to me. I tried all kinds of spray and fresheners but I didn't find anything that really worked. So that may be something to think about, especially if you have to share a bathroom with other family members. I know my son hated to ( and still does) use the bathroom after I'd been in there. Now I dont even notice it. Another thing I found difficult was cutting the wafer (whatever that thing is that adheres to your stomach)to fit around the stoma. I would invest in a good pair of sicissors. I snagged a pair one of the nurses left in my room when I had a hospital stay earlier this year. The main thing is to just give yourself time I know after surgery you'll feel like you'll never get used to it and won't be able to care for it. Don't be to hard on yourself. Its definitely a learning process! I didn't ever think I'd get used to it, plus I was very lucky to have a great medical supply company to order from. You'll get through this and remember your'e not alone!

flabbergasted

Hi all,  I joined for support also.  I am on the Il/Wi line and have a great support group  across the state line in Wisconsin   at one of  the local Hospitals.  the ET Rn that leads the group also has a Stoma.  we meet once a month, have picnics and Christmas partys a monthly news letter,  and are there when we need them.  So I am lucky.  I love this site  as I have used it several times when I can,t reach my ET Nurses on weekends or at other times.  I have used the advice of  other older members. I am giving the information about this site to  the members at our next get together.  And I guess I am addicted to this site as I have learned so much from it,s members. I have had my Ostomy for a little over a year and a half.  and learning to live with it.

Hello Little Red...Yes you are very lucky. Sounds like you have a great support group. You get to interact face to face, which is wonderful. It's a plus you can share with us .  Thanks for commenting!

Thanks for the info flabbergasted!  Very helpful as my doctor told me there would be no smell but he was likely not thinking about when I am in the bathroom.  I feel like there is so much to consider and get overwhelmed.  I am happy you are getting reversal.  I assume that means you are better?!  If mine is successful they will reverse and do colectomy.  I know it will be hard in the beginning but hoping it will help in long term.  Thank you for sharing and to everyone else on the chain!

I too have not become a paid member but have been given a months here and there due to frequency of posts. I am a very private person but needed to know how to fix the problems I was facing with leaking so I could get my life back! The people on here are all awesome and I am leading a normal life. Angel, as you said the support groups In town have a set agenda, whereas, this site has none. It you don’t see a topic you are interested in, you start your own! Not sure where I would be without the support of the people here! Probably held hostage in my home and that is not living! 

Thanks to all that post, it is life changing!

Puppyluv

Puppyluv56... I too agree at least where I went that is. I had no clue about anything in the beginning. I wasn’t even schooled about irrigating until I found this site.  I was a hostage from fear of accidents in public. So I must say so many here took me by the hand, I do appreciate them.  Some are gone and some are still here. Thanks for your comments!

To Angel and Puppyluv,

I also didn't know a thing about irrigation until I went online.  Then I accidentally found this site and I got all the expertise I needed to begin with the irrigaiton.    With all the problems I was having with leaking, you would think that some of the stoma nurses I talked to or the surgeon would have at least suggested it.  Nope.  I find that unbelievable now, as it truly is life changing.  So glad you're doing well with it, Puppyluv.  Hope it continues and you get where you want to be.  This site IS really great!

weirdnewlife... learning is a continued experience on this site. It’s like a recipe you take a little of this and of that... of course we require different recipes. As we all do... but there’s a recipe for all. Thanks for commenting !!! 

Angelicamarie