New to Group

Hi, my name is Kakie.

I am a fairly recent ostomy patient. I had emergency surgery on April 4, 2014, to save my life. I will be honest, I am having a very hard time adjusting to what I call "this thing." Sorry, I cannot find it in my heart to give this thing a name when it causes me so much grief. I don't have a problem looking after it, as I have looked after worse than this over my years as I cared for terminally ill patients as well as chronic patients, which in a way landed me here. :( I have not freaked out when I find this thing bleeding on a regular basis several times a week. I have not freaked out when finding small white lumps on the underside of this thing. What bothers me is the prolapse and how ashamed of myself I feel about the way I look now when I do go out in public. This thing sits high up on my abdomen and looks, and I don't mean to insult anyone, please don't think that, but it looks like a male part that is extremely happy to see a beautiful woman.

:( I was wearing the new SenSura Mio products and have gone through each type, and as of today, I have to give the last type up. :( This prolapse ranges from 4 to 5 inches long, and now it has decided to spread in width as well, this time from the middle up to the tip, and can sit at 6 inches wide if I stand up and do things, like walk. I love to walk and walked 4 miles a day at least until this week when winter hit, and as we live on a back road that turns into an ice skating rink, I'm not sure how much I will get in now. :( But to do that walk or ride my stationary bike, I need to wear a girdle. Well, I found out with this new appliance that it is going to be hard because once you put anything over it to hold this thing in, it fills with air, and as my output has been extremely high since Saturday, and it is not the runny type, it is thick and pasty, and I have seen it in a major blowout once when I first went to the medical floor after my surgery. It took 2 1/2 hours to clean me up.

I have tried to find a group to go to so I could work through my difficulties with this thing, but there is no group in our local area, so I was told to find a group online maybe, but I am better at talking to someone in person face to face, so I guess for me it is to learn how to deal with this on my own, but it is hard. I have had some say I am depressed. I am not. I am angry with this thing. It may have saved my life, but it took many things away from me. I am angry at myself as well for ending up this way. I am frustrated with not being able to do the things I used to do. I don't like not being able to go out and feel ashamed of how I look. I am not a beautiful woman, nor am I even pretty, but I always took care in the way I presented myself, and that has been taken away from me as well with this thing. I just need to talk verbally to work through this, and that is not going to happen, and truthfully, I hate to write.

Till later,

Kakie

Hi Katie, I had my surgery last February. I found this site very helpful. I haven't been on in a while, but when I went in today, the first thing I saw was your post and I knew I had to reply. I too suffered from depression really badly. I stopped coming here because I didn't want to be a downer to people. I have also had numerous problems with my stoma; the latest is a hernia. But the people here really do care and have great advice. I will start coming back here and I hope you stay connected. You're not alone. P.S. I didn't name my stoma either. Take care. Pammer

I know how you feel! I had an acute attack of diverticulitis that perforated my bowel on Sept 8th, 2014. I ended up with 2 surgeries for that and was sent home with a JP drain tube. I continuously complained about the tube hurting, but the doctors insisted that I needed to keep it in for the 2 months until the next surgery. At one point, the doctor even made a comment about how that was just how I was. When I went in for the next surgery, the only thing we had talked about was the possibility of a colostomy bag in case the surgery to resection the colon didn't work. What they did was give me an ileostomy because the tube that I had spent the past 2 months complaining about had punctured my small intestine and that had to be re-sectioned as well. I went home a week later with an ileostomy bag and no real knowledge of it. The nursing staff and wound care nurses are amazing and have done everything they can for me. My doctor doesn't even answer questions. I have found that I empty this thing roughly 15 times a day. It goes from a thick cat poop yellow to a thin toxic waste green color. They gave me meds to thicken it, but they don't always work. My skin is raw underneath the adhesive and feels bruised. I had 29 staples from my groin to just below my breastbone, and the incision weeps constantly. Even empty, I feel like the bag is heavy. I have ongoing nausea and have lost about 20 lbs in the past 21 days. The picture you painted of the bag under clothing seems correct; someone else said it looks like a giant tumor. Yep, I agree. The nursing staff kept saying that a lot of people have them and that people don't know and can't see it. Bull! It is so damn obvious! I still haven't been able to go back to work. I am so light-headed and dizzy all the time. I need to go back to work. I was able to get through a shower standing the other day, but that is where it ended. I have to nap before I am able to dry off, get dressed, and comb my hair. In order to get the shower completed, it required getting up, eating, napping, eating again, napping one more time, and then attempting. Dairy seems to agree with me along with pasta, so I eat a lot of yogurt, pasta, American and cheddar cheeses, and ice cream. 7Up helps with the nausea. I will not pretend that I am okay with this or that I ever will be. The doctor says I have 2 months till he can reverse it. I don't know how I am ever going to be strong enough.

Hi Katie,
My name is Bev. I too had the same problems as you when I first got my stoma in December 2013. It has only been 11 months, but I have started to come to terms with it. (I have to, as I have it for the rest of my life.) It saved my life, so I look at it as a blessing rather than something to be ashamed of.
I too have problems with loose stools and a hernia; my hernia comes up and goes down, changes shape. I have found it is worse when my stools are really loose and regular. My stoma nurse really helped. She advised that the worst foods for making you loose are all vegetables that grow above ground. Potatoes, suede, carrots, parsnips, and turnips don't seem to cause too many problems. Also, all fiber is a no-no; stick to white bread and gluten-free products, as they are low in fiber. Marshmallows are good, but you need to watch for the sugar; my local supermarket does a no-added-sugar marshmallow, which is ideal. Jelly babies are really good (but not the cheap ones), but again, you need to watch the sugar.
I also have problems with bleeding from my stoma. I was advised that it is normal and to try not to worry unless the bleeding gets excessive; then it may be a good idea to get it checked out. Don't try to be too hard on yourself; being upset or depressed and having a hard time coming to terms with your situation is a natural defense mechanism. With time, it will get easier, but it will take time. Give yourself a treat every so often, a trip to a salon, a trip shopping. (Just remember to have your change bag with you.) Also, always remember that Meet An Ostomate is always just a few keys away, and even if nobody answers, sometimes it's just good to get things off your chest.
Good luck and keep me informed.
All the best, Bev.

Rice, applesauce, bananas, marshmallows, peanut butter... stay away from mushrooms, peanuts...

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

I want to say I am sorry to those I have not answered yet. I am desperately trying to get some energy up to do things. It seems that my energy, on top of everything else that seems to be happening lately, has decided to up and go (I am worse than when I came home), so I am having to slowly pick through emails to answer, but I am reading and when the energy gets up, I will answer. All suggestions are much appreciated though. Hugs, kakie

It's okay, kakie. I thought he'd given it to you already. As for being tired, I still have not gotten all my energy back. Some days are worse than others. Don't worry. I'll try this here if you see it. Perhaps the forum gods won't ban me. It's zywie at hotmail.com. Take it easy and don't worry about responding though. That's the very least of your problems. Hugs