TMI: Ostomy Issues

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I’m a very active mother of kids so nothing can stop me from getting things done.Also I think nothing like this is permanent and there are always new advances in medicine. I do know that all the little things you take for granted that are precious, now have become complicated. Since my temporary ostomy I had a heads up to all the obstacles to come with my new ostomy.Here is my point blank and very specific description of my ostomy woes.

In April 2008 due to a Crohns disease colonoscopy gone wrong, I received a temporary ostomy which proved to make a nightmare summer. Since September 2014, I now have a permanent ostomy which can be awful at times. Since the surgery I have regained a normal weight, feel better and don’t take any Crohns medicines right now. Even so, I have this whole other set of issues with the ostomy to deal with.

First of all I have very sensitive skin so I break out in rashes/fungal skin infections, so the bags don’t stick well to my skin. In 2008 and still now It is quite the experimental process to get the appliances to stick to my skin more than 2 to 3 days. I have been going through many different kinds of products to try to achieve success.

Second there are no great appliances yet that stay on long enough to make any water activities pleasant. Taking a shower is now a luxury and a gross process. Also a bath is out of the question. Swimming I can’t even imagine yet.

Third of all when you pass gas, wind or fart your bag starts to fill with air. Then you run the risk of it popping or exploding poo all over, if you don’t release the excess air in it. It is amazing that  you become aware that this is happening even when sleeping.

Fourth is emptying and sealing the ostomy bag. You thought wiping your butt was bad. When you wake up half asleep in the middle of the night to empty the bag, you try not to pass out from the smell because your nose is up close to the toilet as you do this. As you are doing this there is also poop getting on your fingers. Then you have to wipe the poop off the bag closure so that you can roll or clip it shut. It’s also great when you have to empty it in a not so clean bathroom of a store or gas station. Then I put down paper towels to kneel on so my pants don’t get dirty.

Fifth is sexual relations with your partner is not the same. It is difficult for me to feel awesome and sexual with my ostomy bag flapping around. My significant other doesn’t seem to mind,but I’m grossed out by any long drawn out lovemaking events.

Last but not least I have to carry a little ostomy emergency supply bag with me wherever I go. Sometimes my bag may leak so i have to patch it and other times it is coming off so I have to replace it before there is poo all over my clothing.

I have talked to many support groups, Doctors and regular people on the woes of the ostomy. Some people really understand what this all about and others don’t quite get it. So here is a big hoorah to all my fellow troopers out there.

Living on Disabilty, is not what it’s cracked up to be!

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I ‘m  a younger person (41 years old) receiving Disability payments for my Crohn’s disease, allergies asthma and scoliosis.The rules that go along with medicare and medicaid vary from state to state and can be such a pain. I’m in and out of doctor offices and hospitals several weeks every year to maintain health.

The state of Wisconsin still requires you to work to get medicaid, in order to pay for what medicare doesn’t. Also not all doctors will see people with Medicare, especially dentists.I have not seen a dentist for well over 2 years because I’d have to drive 1 1/2 hours away to see one.

Now if I work over 20 hours a week in addition to my disability our household makes too much for a family of 5. I’m not married but my significant other lives with me so his Gross income is counted with mine also.Plus my two stepkids are technically only with us part of the time so it doesn’t count as a family of 5, only a family of 3. They don’t take into account my food receipts, clothing, school lunches and extracurricular activities that are involved with 3 kids.

In April the state was in the process of canceling my medicaid  because I was working 25 hours a week or more.They review this every 6 months to a year.The medicare health system started automatically taking $105 of medicare premiums out of my check each month.They threw away my first paperwork that I turned in to appeal things before I went into the hospital because it went to the wrong office. I went into the hospital during all this and didn’t know I needed to get new paperwork to my employer and send it back all over again.

My health can be been such a roller coaster with my Crohn’s Disease that I again quit my part-time job.I now make considerably less money watching another little boy as old as my almost 7 year old. at least I don’t have to worry about a conventional job that can’t properly accomodate my health issues. It has helped me be a little more laid back when I don’t feel well and now properly care for myself.So many times I have to figure out if some bills will be paid on time because money is tighter.Throughout all this my doctors tell me I should try to not stress out over any of this.