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Help with colotomy and things

Posts: 5
Joined: Apr 2010

Hello all. I'm David and I'm 44 years old. I found that I had rectal cancer at the start of 2008. I went through the chemo and radiation. Now I must live with a colostomy. I have insurance and go through Edgepark for my supplies. I'm not sure what my insurance is for because every month I must pay a little over $200.00 for something I can't have a normal life without. I thank god I'm alive. However, If I can't pay for my supplies....Then what? I still need to go for the one year check-up in August 2009. LOL, Two years later and counting. I'm scared and worried that I'll have to live in my restroom like some kind of troll. A slave to my tiolet. I'm here in the hope of finding help for my problem. Please help me, If anyone knows of some organization that can help me. Please let me know. If I sound like I have an attitude, I'm sorry. I don't mean too. I just need help and don't know where to turn. I hope all is well with everyone and Thank you all. :|

Posts: 1
Joined: Apr 2010

I have not had mine for too long, but with your questions I think I would check with your ET nurse (that stoma nurse) and also with the Colostomy Support Group in your area. I hope things get better. Cancer sucks. Wearing this bag sucks too, but we are here to make a difference - just need to find out what that is. Take good care. Wade

Posts: 4
Joined: Apr 2010

I have 2 places you might try. I have had my colostomy for a year and indeed it sucks, but I do what I need to do. Good Luck!

pluckey's picture
Posts: 484
Joined: Jul 2009

I had an ileostomy and remember how expensive the supplies are. My insurance did cover it though. Can you appeal to your insurance company? May be worth a try.

When my ileostomy was reversed I googled and found a place to donate my supplies to.
check this link http://www.ostogroup.org/ and hopefully they will ahve the products you are wearing.

Hang in there David...


PamPam2's picture
Posts: 376
Joined: Jan 2009

Hi I no longer have my ostomy, was able to have a reversal. I have talked with people on here and personally know one person, who is a truck driver that use irrigation to deal with their ostomy. They only wear a patch over the stoma. They train you how to do this properly, and you also plan your food intake, I guess it takes a little while to learn your body rhythm and how to do this. This is only one suggestion you can look into. Some of the ideas others gave may help you. I had to go on medicaid and they paid for all my supplies, if not I would not have had the money to get them either. Hope something works out for you soon.

RickMurtagh's picture
Posts: 586
Joined: Feb 2010

If your insurance company has a patient advocate, call them up and discuss what you are going through. Perhaps they can help in some way. If not, the organization Peggy listed is excellent, give them a shout out.

amyb15's picture
Posts: 109
Joined: Jun 2009

I do not have one. I am on this board because my sister has stage 4 cc. She does not have one either. I can't offer any info or help on this. I just wanted you to know I think it is very funny how you said "like some sort of troll". You have a great sense of humor!!!
Trolls rock.


Posts: 5
Joined: Apr 2010

After I got done crying, I started typing this. I have a great wife / best friend for support. But untill now I thought that I was the only one. I heard that there were 1000s of people in the same boat that I was in. When I would go places I looked to see if I could find just one person that knows how I feel. Then I find you guys, People who do know how I feel. I hate more than anything when someone says, (I know how you feel) and they don't have a clue. If there are anymore ideas or suggestions. Please let me know. You guys have made my day, I feel better about life and for now I feel as if things are going to be ok. OH and the troll under a bridge is just about the same thing as feeling like your stuck in a bathroom with no supplies. Or am I misstaken? Again just reading your comments have helped me already.

Posts: 3692
Joined: Oct 2009

Hi David,

You are definitely not alone, there are many people here; all our stories are a little different but have commonalities. This is a great place to come for encouragement, advice, understanding etc. Welcome aboard!

Patteee's picture
Posts: 950
Joined: Jul 2009

I would fight your insurance company on paying for supplies. Initially I was too- getting the goods from Mayo store online and would have to pay. Then a stoma nurse at Mayo said, "that isn't right, these are supplies you need", so I called my insurance company- and the reason they weren't paying is because Mayo Store wasn't on their list!! So they added it to the list, re-imbursed me for supplies I had already paid for. I would fight this if I were you!

Shayenne's picture
Posts: 2370
Joined: Jan 2009

And welcome to our family! many of us here, including me has colostomies. I am lucky that my insurance pays everything, and I have never had to pay a thing, but are you on medicare or anything that can help you with what your insurance won't? Don't despair, it's just a different way of "going" to the bathroom, butts aren't the prettiest place that you have to go to the bathroom from! It saved my life, and I actually don't mind it, I wear long shirts, so it's not seen, it's not like I go in the public alot either, because I'm afraid of germs and such, but I do get out, my family still hugs me, and puts their hands on my belly when laying with me, so they don't make me feel bad for having one either. They don't mind it, so why should I. :)


karguy's picture
Posts: 1024
Joined: Apr 2009

I have a permanant colostomy,and have had it since july 08.I get my supplies thru byram supplies,and use coloplast products.My insurance pays for most of it,I pay about $34.00 per month copay.If I were to pay for the whole amount,bags,waffers,1 box bags,5 boxes of waffers,and 3 bags of osto ez vents,it would be about $100.00.You need to fight with your insurance company,and get them to pay for most of it.The colostomy is not a bad thing,you get used to it after awhile,and it's better than the alternative.And feel free to come,and vent or ask questions anytime.

Posts: 5
Joined: Apr 2010

I have a stoma and I'm working at a bleach plant in the lab. From time to time I must lift heavy things. I race against the clock to get the next set of samples before the hour is up. I hardly get breaks and if I take a lunch, I must then catch up with my samples. I have been told by my doctor and by people (health care nurses) that I should not be lifting anything, If I do then my intestines could come out. I'm also told that if this happens, The chances of this happening again is greater. Because when it's fixed the aera is weaker. My question is How hard is it to get on Disability? I have just scratched the surface and see that it's not going to be an easy road to travel and it's all up hill.
Sometimes............. This is how I feel about my life all of the time. You know that scene on the movie Cast Away with Tom Hanks when he is trying to make fire and he shoves that stick into his hand. Then he gets upset and starts screaming. That's what I'm doing on the inside all of the time and I'm so tired of feeling this way. Then I think even darker thoughts..... Where in the hell is the chat room, I want to talk to people not send messages back and forth over the course of a few days.

geotina's picture
Posts: 2122
Joined: Oct 2009

There are a lot of people on this board that are getting disability either through their work or social security disability and are extremely knowledgable about it. It is my understanding if your cancer was Stage IV you are pretty much automatically approved, it takes about six months to process but then the check you get is backdated, something like that.

My suggestion to you is to start a new discussion thread. Something like, need help with disability, that way it will be a new thread and those with experience can help and send you in the right direction.

They can also give you information regarding health insurance while on disability, COBRA and Medicare which as I understand it does not kick in for 2 years after you go on ss disabiltiy.

As far as lifting at work, they can help with that also. If your doc says no lifting then I think your employer has to follow through with no heavy lifting. You can start a thread on that also and those with some knowledge will give you some guidance or just include it in your disability thread.

Start a new discussion thread and you will get more responses.

Take care - Tina

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