I know I told y’all all about my hospital stay and surgery and blah blah blah, but have I introduced you to my stoma? I don’t think I did. So, while I am not going to show you a picture of mine, I will tell you a little bit about what “it” is, and the things I need to take care of “it”.
If you have never heard of a stoma or colostomy before, you are not alone. I had no idea what a colostomy was until I was about 53 years old, when my mother had emergency surgery for a ruptured diverticuli and received one. She is now 84 years old, and had her colostomy reversed a few years ago.
After I received my colostomy in May, I also learned that there are different kinds of ostomies, which I also never knew. From the WebMD website:
A colostomy and an ileostomy are two kinds of surgery. These surgeries are done when a part of your intestine is diseased or damaged and doesn’t work right. The surgeon makes a hole in your belly and connects part of the small or large intestine to that opening in the skin. This opening is called the stoma.
This picture is also from the WebMD website. It is an illustration of what a stoma looks like.
My stoma is on my left side, and is still healing, so it is rather large right now. Stomas can and do change their size and shape as time goes on. Sometimes a colostomy can be reversed, and mine probably can be, but since I have no health insurance right now, it probably won’t happen, because the reversal would be an elective procedure. Unless I win the lottery or somehow manage to find an insurance company that will cover me, I will have my stoma for life.
After the surgery is done to place the stoma, you will no longer have your bowel movements through your rectum. That is now the purpose of the stoma. Something you should know, but I was not told, is that you have no control over what the stoma does. “It” will pass your fecal matter at will, and will also pass gas at will. Because there is no feeling in the stoma, you will not know when this is going to happen.
So, now that you know what a stoma is and what it does, I will tell you a little bit about what I have to do to take care of it. Because it is a “poop machine” that operates on it’s own schedule, if you have one, you will have to wear an ostomy appliance. This is also called a pouch or bag. I have what I call a “Blow Out Bag” that I take with me everywhere I go:
The company that sent me my starter kit of supplies sent this little travel bag. It is ugly, and really not big enough to carry everything that I need if I have to change the bag when I am out somewhere. So, I started using this backpack that I made. It is cute and pretty, and holds all the things I need:
Inside this bag is everything I need to be able to change the ostomy appliance when I am traveling away from home. I take it everywhere I go, just like when I had my babies and took a diaper bag with me.
So, just to educate you on what is needed to take care of a stoma, I have pictured the things that are in my backpack:
1. Adhesive remover wipes. This helps get the old bag off. If I don’t use one of these to help get the adhesive off, it hurts and can tear my skin. Don’t want that to happen, so I keep a supply of these in the bag.
2. Adhesive wipe. This one has a special type of glue on it to help adhere the wafer, or flange, to your body. You want that wafer to stick tightly so you don’t have a leak, or blow out.
3. Stoma adhesive paste. The paste is applied to the wafer in a bead around the hole that fits around the stoma. It forms an extra little barrier to help prevent leakage. It is much like denture adhesive.
4. Adhesive spray. Yep, another type of glue to help make sure that wafer stays put. I might not use all three of these things at once but I have them all “just in case”. I want to make dang sure I have no leaks.
5. Scissors. Sometimes if my skin is tender or irritated in one spot where the tape on the wafer would go, I use these to cut out a place so that tender area is not taped. Very handy to have.
6. Stoma size chart. Because the stoma can change size and shape as time goes on, you have to use this to measure it before ordering supplies. It is important to order the right size wafers. The right size helps prevent leaks.
7. A mirror. I have a much smaller one that came with the starter kit, but I can’t see much with it. I keep this larger mirror in the bag so I can see what I am doing. Since the ostomy is on my abdomen, having a mirror is very helpful.
8. Rubber gloves. Just in case of leakage.
9. One of my “kits”. I put these together when I received my supplies, to make it easier to have everything I need in one place when it is time to change the appliance.
To make my kit, I use a gallon size zip lock bag. Inside that, there is a quart size zip lock bag, an adhesive remover wipe, an adhesive wipe, and an ostomy bag:
Notice that the bag has a plastic ring near the top. It fastens to the wafer much like a tupperware lid fits onto a tupperware bowl. The bottom is open so that you can empty the bag when needed, and is held closed by a plastic clip, which is not shown.
And finally, this is the wafer, or flange, that fits over the stoma and adheres to your abdomen. This one is still in the packaging, but you can see that it is fitted with a plastic ring where the bag attaches to it. Once you glue the wafer to your abdomen, and snap on the bag, you are finished.
I also keep a supply of wipes in the bag to use for cleaning up around the stoma.
I use the quart size zip lock bag to put the used pouch and wafer in when I take it off. Then, I put all the packaging from the new wafer and the zipped closed quart sized bag, into the gallon size bag, and throw it all away.
So, there you have the 101 on stoma care. If you have any questions, just ask. I will answer if I can. And if I can’t, I’ll ask over at Inspire.com, which is the best ostomy support group out there!
Elizabeth says
You are so brave!! What a difficult thing to have to deal with!! And to be planning to go back to work too!! I so hope something happens that will allow a reattachment later!! That shoudl not be considered an elective surgery!! Do you think it is something that you maybe could have done in Mexico? There are some people with other problems I have read have been very pleased with the medical care they got there.
Connie says
I didn’t know all of that. Wow that’s a lot to deal with. I do hope you win the lottery. Yes you are brave to go back to work but then you love your job so that makes it easier I suppose. My hat is off to you.
Bev says
Ditto on the brave part! Thanks for sharing your experience. Although I have heard of the procedure, I had no idea what the procedure entailed. I am sharing your blog with a friend whose father recently had a colostomy. I know I keep telling you this…Karen…you continue to share and help so many…you are indeed an inspirational lady! Because it’s the truth!! 🙂 Hugs
Kasandria Reasoner says
I agree with all the others on the BRAVE! You are a strong woman!
Kas
sheri says
I think it is ridiculous that it is elective surgery to have that reversed. I am glad you are here to tell us about this though. I was worried!
Pam in Louisiana says
That’s definately a learning experience for me, and thank you for sharing it with us. I know of a few folks who have this, but none I know well enough to ask about it, so I never realized how things worked and are worn. Wonderful idea to make your own bag, it’s not so ‘medical’ looking, it’s very cute and no one would guess what it holds inside.
Gaelyn says
Glad you shared this to help us better understand this whole ordeal.
Bob says
My Mom had colon cancer in (lemme think) 1965, and ended up with a Colostomy. Took a bit of getting used to, that’s for sure. One of the biggest challenges for her was the strict diet that she then had to follow.
Of course, I think I was bout 8 at the time, so it was all a little bit beyond me. I was just glad she survived the operation, which in those days was no walk in the park. Same is true now I imagine.
She lived with her Colostomy for the rest of her days, and passed away from something completely unrelated in 1980.
Rachel says
I had no idea what all was involved with a colostomy. Wow, that is a lot to deal with. I agree that it is unfortunate that the reversal is considered elective. Maybe someday you can have it done.
I love the backpack you made to carry all your stuff in though. It is pretty.
Canadian Mom Blogger says
I commented from my phone yesterday, but I guess it didn’t show up. I think it’s terrible that you can’t get it reversed when you are ready. I will pray for a win fall for you.
Dawn Fine says
ThanKs for being so candid and informative about your Stoma, wishing you all the best!
Susan Adcox says
Nice to meet your stoma! One of my nephews may have to have an ostomy sooner or later due to ulcerative colitis. Now I will know what to expect.