Life with an Ostomy: Venting about the Challenges and Triumphs

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This topic provides a space for sharing experiences and advice on navigating the challenges and victories of living with an ostomy.
Poohgirl44

Well, this is my first time to blog here - actually, the first time to blog, period. I am not sure I even know how to blog! LOL. I just know that sometimes I just need to vent. This seemed like a good place to do it because I am sure there are folks on here who have felt what I am feeling. There are SO many different feelings that come along with this bag. Feelings that range from relief to confusion, to anger, to sadness.

I know that this thing saved my life, literally, but some days I just want to say "WHY ME" or screw it all!! This thing has changed my life SO MUCH. I have actually had it for a little over a year, but it seems like just yesterday that I woke up from emergency surgery with it attached to me. I thought I would NEVER learn how to change it on my own. And the leaks, oh my gosh! Especially when I was at work. How humiliating!!! I mean, really, what do you say - "Sorry, I have to go home because I have poop all over me?" I mean, they were really very nice about the whole thing and for that, I am grateful, but I still HATE it when that happens. Thankfully, it doesn't happen very often anymore.

Then there is the financial aspect. It is phenomenal!! You see, I have no insurance. I have had two hospital stays - both of them a month long. So you can probably imagine or maybe some of you have even experienced what that is costing me. Bills being sent to collection agencies because I am not paying fast enough to suit them. Most of them have been willing to work with me, but a few of them have been unbelievably ruthless! As if I have a money tree growing somewhere. LOL. If only I did, I would gladly pay them ALL!!

Well, I think I have rambled enough for now. So for tonight, I will say goodbye till next time.

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Past Member

Hi Poohgirl and welcome to this site.
I know things can be a bit overwhelming at first, but remember that you can get through this.
Doctors and hospitals cannot refuse you services and as long as you make some kind of payment (even a small amount every month). They also cannot threaten you. If they are, you might try contacting your state's attorney general. Just explain that you are trying to pay but cannot pay a large amount. You might also try speaking with your pastor or even your work, some churches and businesses have an "emergency hardship" or similar type fund that helps people in this situation. Hope this helps some. Good luck and God bless.

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lottagelady

Hi Poohgirl and welcome to the site, hope you feel a bit better for your rant!

Take care - it will get better!

Rach xx

Poohgirl44

Thank you for your comments and suggestions. I appreciate the warm welcome and the safe place to vent! Thanks again.

lynsie

At I'm at home now, applying for disability, ileostomy and fistula, large stomach hernia. I've been home since August. I've turned into a little old lady - lol. I watch game shows. I barely go out and take supplies with me, but prefer to be at home. I usually know when to change the flange/pouch, but the fistula oozes sometimes twice a week, then nothing for three weeks!? It can be frustrating. I'm glad I came across this site...take care!

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Primeboy

Hi Poo,
Stop thinking of yourself as "Poohgirl". You're not doing yourself any favors. Another ostomate refuses to let herself be defined by her bag. You shouldn't either. You'll get over your confusion, anger, and sadness and move on to a far better self-concept and higher level of self-esteem. In time, you will manage your appliance with minimal inconvenience. You may even find a money tree in your backyard (more unlikely). The important thing is to get control of your situation, your emotions, and your life. That won't happen until your feelings move on to acceptance and beyond. Give it time.

dentalguy44

Hi there... I have gone over your blog and I can (as most of us here) relate to what you are saying. I have been fighting with Crohn's and UC for 28 years. I'm currently in a rehab center recovering from major surgery related to my Crohn's, the first surgery I ever had, and hopefully the last. I had a resection done, and I have a stoma. I don't know what type of bag you are using, I use a two-piece system from Hollister. It is an awesome system. I never had a leak issue from either the flange or the bag itself. The Hollister bags have a roll lock seal. You fold the end of the bag twice, and then there is a Velcro strip that keeps the bag closed. I flop around like a fish at night when I sleep, and I never had an issue with the bag leaking or separating from the flange. If you don't use the Hollister bags, you may want to try them out. As far as your emotions go, you need to relax. Easy to say, I know. However, nobody wanted to have a bag on them. I mean, it was not on my list of the five things I want to do in my life. But I have one, it is what it is. I'm still the same person I was before the surgery, and yes, I have to do some things differently, but the bottom line is I'm alive! As far as the debt goes, well, I would rather be up to my eyeballs in debt than not be here at all. I have two girls I would bleed myself dry for. They were my motivation to have the surgery. I have to be there for them. I am a devoted believer in positive thinking and meditation. Try to keep your mind focused on the positive things in life. If you do that, you will notice things turning around for the better. Plus, you have all of us here at this site to talk to or vent. It's good to get your feelings out. It's part of the healing process, and it shows that you want to change things for the better. Things will get better for you. Just keep your head up, stay positive, talk to someone when you need support, and everything will be okay. Blessings to you... dentalguy44

Poohgirl44

Hello all, I haven't blogged again yet but I wanted to respond again to the comments. First, please let me clarify something. The name Poohgirl simply comes from loving Poohbear!! LOL Not from defining myself by my bag although I can sure see in hindsight why it might seem that way.
Also, Dentalguy44, I do realize that nobody woke up wanting one of these things. And I certainly don't want to come across as seeming like I think my situation is any worse than anyone else's. I was just having a "day". I have those sometimes. I am glad you were blessed with children to give you such strong motivation. I think a child would probably do that for me too, but unfortunately, I do not nor can I ever have any children.
I am familiar with the Hollister products but cannot use them. Seems my skin is sensitive and I developed an allergy to the products I was using. So I stay with what my ostomy nurse/friend recommended. I can pretty much do what I need to do with ease - just get frustrated sometimes. But I thank you all again for the thoughts and suggestions. Again, I was just having a day. I am not ALWAYS this negative. God bless all of you.

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