Desperate for Help: Seeking Advice on Managing Chronic Pain with Colostomy Bag

Hello all, I haven't been on in a long time, as my life is not what it should be and nowhere to turn. I had my surgery while living in Florida in 2009. The attending physician told me he thought I had a gallbladder attack and he sent me to the hospital only to be met by a surgeon. The first thing I said to the surgeon was I didn't want to be cut, as I don't do well with anesthesia. The next thing I know is I am real groggy and being wheeled to the operating room. Well, these two surgeons made a mess of me and as it turned out, I had colon cancer, and they were not specialists, so they did a horrible job and also said my cancer was spread and I had about 6 months to live. As a result of not having a good doctor, my colostomy was placed so low that the appliance lays where my leg is. I was in intensive care for 10 days on a respirator as my breathing was horrible and I was septic. What next? Well, they transferred me to a rehab home where I stayed for 8 weeks learning to walk all over again. During this time, nobody ever came in to show me how to change the bag, they just kept sending people in to do it for me as the appliance would not stay on and I was always leaking all over. Well, I was sent home with a nurse to come to my house to help. Talk about shock when she found out I didn't know how to manage my stoma. The next big factor was when she saw where it is placed she knew I had big problems. Well, to jump to the next part of my story and my depression on life. I moved back to NJ where I had family and started chemo and lived with pain all the time from my stoma area being so sore. I have seen three doctors here and all of them say the same thing, I am not a candidate for more surgery but unfortunately, I suffer all the time. My primary doctor said to take my pain meds and forget about surgery. Well, now the pain is not controlled with the meds. I don't know how much longer I can take this pain and I have been to an ET nurse and yes it is all about changing the appliance but nothing helps. I suffer all the time and am at a loss as to what to do. My family is no help at all, as they don't want to talk about this bag or hear anything so I live alone and wonder if my time is drawing near. Well, thanks to all for letting me vent and any advice as to who to see next will be welcome. I am a 69-year-old female, Joyce.

Hello Joyce,
Wow...just read your recent posting. I am a 71-year-old survivor of colon cancer and received an ileostomy in 1981....which means I have been wearing a "bag" for 31 years now. I feel qualified....having "been there and done that" to possibly give you some help you may not find elsewhere. My name is Buck ("buckeroo" online) and I reside in Texas.
Feel free to contact me if you wish....just to talk, vent, or whatever, OK? Keep your chin up!

I would really feel good to know there was someone that I could talk to about all the hurts I have and of course the possibility of my cancer returning. I don't know who could understand how hard it is to be on your own with no help at all. Yes, the oncology doctor waits for cancer to return, a surgeon wants to do his thing which is surgery, and the primary says keep myself comfortable. I personally hate running around to all these people and getting nowhere, and coming home and living with the same pain and discomfort each time. I am about to give up as I have been able to take the pain when it was at a level 4 or 5, but not when it has been at a 10 for almost two weeks. Any suggestions? My stoma was placed wrong, I now have a parahernia and lord knows what else. It took almost a year to learn how to fix the colostomy so it would stay on since no one else could do it. I had no help in the hospital and no ET nurse to ever visit me in the hospital. The other real problem for me is I can't see the stoma where it is placed, so I have to hold a mirror with one hand and dress the wound with the other. Sorry to ramble again. Any help, even just to talk, would be appreciated. Joycer

Hi Hometown - first of all - congratulations on surviving 3 years instead of the six months your doctors said you had left!!!!!!!!!

Next, since they did at one time give you a life-limiting diagnosis, you should be receiving the HOSPICE benefit under Medicare (I assume, given your age, that you have Medicare). You would then have access to home nurses, excellent pain control, social services, spiritual services, and much more. You do not have to be "DYING" to qualify for hospice care (I can tell you this having worked for various hospice organizations in my former life). You do not have to be home-bound like under home health care either - you can go out as much as you like.

Get your Primary Care doctor to refer you to hospice ASAP! Your outlook on life will improve 100% - no kidding! ;Pam

Wow, I didn't know about that, and I am so glad you wrote about it. I sit here in my apartment and even though it doesn't look like it should hurt so much, but the minute I apply the appliance, pain takes over. Also, any output sends me through the roof. Every time I see a doctor, they don't want to look at it like I have the plague or something, and that includes my oncologist. I don't like to look either, but that is part of my life. I have tried different appliances, and the longest one would last with a low pain threshold would be about two weeks, and then the appliance started leaking and falling off when least expected, so I had to go back to the one that cuts in my leg crease. Well, thanks for listening. Joyce

Is the pain because the skin is raw around the stoma? If that is the case, you can get meds that will help it heal. It should not be raw. Secondly, I changed the appliance much more often than every other week, and don't be afraid to let it air out and dry around the stoma before you put on a new appliance. I know it is hard to get answers, but this is the place to vent and ask!

Hello, thanks for responding to my mail. I appreciate anything anyone has to input on this mess. I change the appliance every three days and as soon as I put it on, I get the pain and then when there is output, the pain is horrible. I did use different appliances and nothing worked for more than a short period of time before the pain came back. I even have trouble cleaning around the stoma as it hurts real bad when I touch it. I am now using Aloe around the area and it is a little better but not real good. Thanks for your reply, Joyce.