Struggling with Colostomy Reversal Costs, Need Advice

Hello all. I have had my colostomy for a little over a year. I had diverticulitis and due to this, I had to have a temporary colostomy. I was told this would be reversed after 3 months by my doctor. I did not have insurance at the time and if I didn't have the surgery, I would have died. I told my doctor this and he said not to worry. You need this surgery and we can reverse it after three months. I agreed to have the surgery. I was in the hospital for 11 days and was off work for over a month. I lost my job the first day back to work. The "did away with my position". That was BS. I think it was because of my colostomy bag, not anything else, but I live in an "at will" state so there was nothing I could do. So everything was strange. I had a lot of new emotions to deal with. I was conflicted about having a colostomy. What would people think? Could they smell me? Could they see it? etc... you know we have all been there. When my 1-month check-up came, I went to see the doctor and he said we needed to talk about the reversal. He then said I should wait at least 6 months or longer if I could so that everything would be healed better and the next surgery would be easier. I was a little disappointed but hey, what was 3 more months, much better than a lifetime right? At my 6-month appointment, I was told that it was an elective surgery. That I had to finish paying for my last surgery (which I had set up payments and had never missed one) and pay $4,000 for my next surgery and settle with the hospital before I could have the reversal. After this news, I still have not been able to find a way to have this fixed. Since I lost my job and am not on unemployment, paying for my bags out of pocket and trying to pay off my doctor bills of 100,000 plus, I am not able to come up with the money to fix me. This is all very hard. I have days where I cry all day long. They are getting fewer and farther between now, but they are still there. Does anyone have any advice? I also tried to get a medical card and was told no... if I had children then they could help me but I don't. I then applied for Social Security so they would decline me so I could get a medical card and they still would not let me have one. I just don't know what to do anymore. I know there are others out there that are going through this. I even know of a homeless man that they gave an emergency surgery too and he can't afford bags so he uses duct tape when they break and goes to the ER when he runs out. I feel so bad for him. My little brother thinks it's cool that I don't have to get up to go to the bathroom but it's not that simple. It makes you feel like you are less than normal. And when I pass gas, it is very embarrassing and I don't like going out in crowds I don't know. My friends and family love me and take me for what I am but when a stranger gets involved or I have to go to a wedding or a school event for my family's kids, my anxiety goes sky high... Thanks for listening everyone. If you know how I can get some assistance, please let me know.

I was told that SSDI, as a matter of policy, will consistently deny applications on the first and second attempts. My only advice is to keep applying and get some letters from your doctors saying you are unable to work for some reason. It's an uphill struggle all the way, but it's the only thing I can think of. Good luck! PB

I went with SSDI with another issue but what Primeboy says is true. I have never talked with anyone that wasn't denied the first and usually the second time. After my second denial, I hired a lawyer who specializes in SSI before I finally got approved. The lawyer gets paid when you do - a percent. I hate the entire process but that seems to be pretty standard. Talk to a lawyer and be sure they work on contingency. You frequently have to present the hardship caused by your denial - this blog would be a good start. At different times there have been posts about resources for free supplies. Search through and see what you can find. Keep on moving forward and keep us posted on your progress. May blessings flow over you... Carol

Sorry you are going through such dark times....never fear, things will improve. There are places that people who qualify can get free ostomy supplies. I will include a link from this site. http://www.meetanostomate.org/phpBB2/viewtopic.php?t=47. I have some surplus supplies that I would be glad to send you, if you would like them send me your contact info and I'll ship them to you. Best wishes to you, and may God bless.

Hope this helps buddy... http://youtu.be/ILtDs0MmRHE

You're not alone, BEG

http://youtu.be/ILtDs0MmRHE

Hi kyostomate, if you go to uoaa.org website and look at the top of the page, there is a list of companies like Convatec, Hollister, and others with 800 numbers. Some of them have programs for unemployed people and free samples if nothing else. Good luck, Ron in Mich.

I went through it here in Montana and it wasn't easy. I was denied three times before I got the paperwork to go through. It was a long fight. You just have to jump through the hoops they want you to. Get discouraged so you quit and are stuck with the bill. My first surgery was about $80,000 with all the visits and supplies they cover for since I didn't have insurance through my job at the time.

I had my emergency colostomy in 2007 - 10 inches cut off my colon because of diverticulitis. I too didn't have any insurance - and the doc wanted to reverse me - but I said no - couldn't afford the reversal, too much risk a second time, infections from the hospital and horror stories about doctors messing up, and having to do it over a third time.....and the diverticulitis could grow back again, and you might have to go through the entire process a fourth time. At least with a bag and no sphincter muscle, the poop comes right out and doesn't usually build up in the colon to cause diverticula problems. But then I'm older than you, and never plan on wearing a bikini anyways....being younger, probably makes a really big difference. But you get used to having a bag, after awhile, it's just part of your life....my doc said he left my rectum live, so if ever in the future, I could have it reversed....but I don't think I ever will -- too risky expensive, even now that I'm on Medicare, and the older you are, the more traumatized and dangerous any operation is. Even though Medicare pays 80% of my bags and flanges, I still scrub and wash my bags out, then disinfect with peroxide -- too expensive to just use once and toss out! If you can't smell your bag, nobody else can either - don't worry about it....if you do smell it, just get up and go to the restroom to clean or change it. I'm able to tolerate changing my flange just once a week - I also use peroxide on a q-tip to disinfect and clean with each wiping. Just recently, after a bout of stress, my stoma has grown little growths around the edges - I read where that was normal, if they get too big bleed too much, they can be burnt off. I dab stoma powder on my skin before gluing on the flange each time, this seems to prevent sweating and itching. I find that daily walking exercise and hanging upside-down on those stretchers, seem to help keep me regular and without cramping. There are more ostomates out there than we ever expected....with all the fast foods and unhealthy diets, it's not surprising. Eat healthy, stay away from sugar and red meat (which takes 48 hours to digest in a human system), and take your vitamins -- and hope for the best.

Hi! I had my surgery in May of this year. I have a colostomy. I'm still on the fence about reversal after hearing so many stories of 'short bowel syndrome,' having to be near a bathroom at all times, and major accidents (after reversal). What size barriers do you use, Kyostomate29? I have a few in size 2-1/4. I'm sure there are enough of us who could help you!!

If we could meet in chat, I have a lot of supplies that you can have. I don't use either.

Wow, all my thoughts exactly. I know what you mean about everything except for I am blessed by my company that I still have insurance. It's not the best, but I can pay off a few thousand over time. My reversal is scheduled for Jan. 6th. I am scared about it but will do it to get rid of this damn bag of 5 months. I also cannot attend certain things because in quiet places is where the bag makes noise and it is mortifying to say the least. Hang in there and know Jay in Richmond, VA will be praying for you and all of us. I think it sucks that if you are lazy or bipolar, the government takes care of you. But if you are stuck with a poopie-pouch, no one cares!!! It has been a bad year for me with diverticulitis and a stoma. Let's all join forces and do to the junk food industry what people did to the tobacco industry. THINK ABOUT IT: WE DID NOT HAVE WARNINGS ON THE PACK,....HMMMMMM

By the way, I may have a few supplies left over if the reversal is a success. E-mail me about mid-January and I can send them.

I'm sorry to hear of your misfortune. I know what it is like to be without a source of income and insurance when you are going through this nightmare. The fact that they call a reversal an elective surgery is nonsense. I also can relate to your anxiety in social situations with the ostomy. Have you ever thought about having the reversal done at another hospital with another doctor? That would allow you to have the reversal without paying off the old surgery. Have you tried all of the city, state, or federal benefits that are available? Have you contacted a social worker to help? I can spare a few bags in the next couple of weeks if you need them. I hope things get better for you and I wish I could be of more help to you.

Thank you, everyone. Since I have posted my last blog, I have been able to get help from my grandmother. She happens to work for a nursing home and they give them to me for a discount now. I am counting my blessings because hey, I am still alive, right! It helps to know that I am not alone. I am looking for another doctor now. I think what my original doctor did was shady. I think that should have been explained from the get-go. Bubby, let me know how the reversal goes. I will pray that all goes well. I am still fighting for a medical card. Now that it has been a year and my situation has changed, it will work out. I don't want SSI because I hope that will be there when I am older and need it. I also like the idea that we join forces and at least get out what happens to people. I wrote to Ellen and Doctor Oz with no luck. We can start our own YouTube channel or something! Anyone close to KY so we can get together and wrap our heads around this?

It's me, Bubby. I am petrified about the 1-6-12 reversal. OMG. Scared shitless! (No pun intended) !!!! LOL, gotta laugh right? And yes, I will let you know how the surgery goes (if I live!!!) Just kidding, I am not right in the head lately as most of you will understand without a doubt. VERY SCARED, HAVEN'T SLEPT IN 2 WEEKS. BTW, I am close to KY. I am in VA. Brrrrrr, it is cold today. I work outside and the bag is really terrible to deal with, with lots of clothes. Write back soon.... :) Good luck everyone, God bless., Jay

You have my empathy, Bubby! My surgery was in May of 2011 so I can't even think about a reversal until the end of February. I'm scared to even do it. I got all these reasons from my surgeon but am thinking about a second opinion. Please keep in touch. I am here for you ... am also a R.N. Hugs from Carmen in Alaska

Wishing you only the greatest success and speediest recovery, my friend. Keep us informed, okay?

Thanks, Alaska Girl and Brown Eyes! Also, wishing you the best of luck.

Well, I'm home y'all! Reversal was done good on Friday, now Monday night at home trying to recover. It was easier this time as I was healthy going into the O.R. Don't get me wrong, it was not fun at all, but well worth it so far. Bandages, pain meds, antibiotics, drainage, weird b-m's, but no bag!!!! So excited but not totally out of the forest yet. So far, so good. My doc and nurses said it went very well. I won't forget all of you here and will always have a special respect for those with the bag. Wishing all the best for everyone and I have a few one-piece and two-piece bags left. Off to pop another Dilaudid! Keep me posted, Jay.

Wonderful news, Bubby.....wishing you continued and speedy recovery and can't wait to hear about the changes it makes in your life!!! Just because you no longer use a pouch, doesn't mean you're not a member of this family. Your story may be the one that gives someone else the courage they need to finally make a decision. So don't you ever think that because you no longer have an appliance, that you're not welcome here....That's S-O-O-O not true...Okay? I can only imagine the questions you can answer, the comfort you can supply, and the knowledge you can share......outstanding!!!! BEG

Great to hear your wonderful news, Bubby. It's always fantastic to hear a positive outcome. I'm amazed to hear how quickly you were discharged, but I know from experience how much quicker recovery is at home. So, well done and keep positive, and do keep us posted as to how you get on. Take good care, Colm.

Well, it's me again. Not much news except I get staples out Monday and I have a pain in the butt! Literally. Weird body aches and such, but otherwise feel okay. Not good or great, but okay. It is cold as hell here, so I haven't been out exercising or gallivanting around much (spelling is in question), so I feel kinda sluggish. So far, I do recommend reversal if possible. No regrets so far. Lots of minor scars, but all battles leave wounds. I would like to hear some of your stories as I will be recovering at home for at least 2 more weeks! Then back to work for Jay. I will close to say, the reversal was much easier than the colostomy surgery for me, especially mentally. No more bags! Hopefully for good... Take care all. I will be in touch...

I can't stop talking. It has been a whole 5 minutes since I wrote! To all of you with permanent ostomies, it wasn't so bad after all. I mean, it's convenient. I have had to run to the bathroom a few times this week, and other than the mental stigma, which was understood by all my friends and family way good, it just wasn't so bad after a while. Yes, it is definitely a lifestyle change. No more looking sexy on the beach, playing contact sports, but there is still so much more to do in this world that is so fun!!!! I went to Busch Gardens this fall with my company and wanted to ride all the best coasters that I once loved, but I could not in fear for my stoma.. Well, the adult rides like the safari train and ski-lift that I never wanted to ride because they were square, were actually very fun. I may not have ever ridden them if I was not on the bag! Oh well, take what life gives you and make the most of it.... You may just like it after all!!!!! Jay

Where is everybody? 12 days post surgery and doing better every day. Still some pain internally, but doc said normal for a few weeks. Scars healing nice! I had a thick ribeye on Sunday mmmmmmmm delicious. No symptoms or digestive problems. Just fork-cutting goodness.....omg! Heaven! Anyway, I still got some new bags in wrapper- cut-to-fit style if anyone needs them. Bless everyone and I highly recommend reversal if you are a candidate. Don't believe all these horror stories if your doctor says it is possible, believe him/her. Jay