Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Hi @deneenknox,

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@deneenknox, what brings you to this discussion about Ostomy?

When I saw colostomy, ileostomy, urostomy on Mayo Clinic Digestive Health I was so happy. I have so much I need to know and I can share some things. I then had this feeling that I was needed in the bathroom. I am not sure what can be worst than a full bag/pouch/appliance of liquid and air. I had to clean the front of toilet, the floor, the clamp, my hands, and change my clothes. At least I did not hit my shoes. I know we are to empty our bags when it is a third full, but I have not figured out when the bag is 1/3 full, when I have diarrhea my bag goes from empty to full in a matter of minutes.

My ostomy is the results of radiation I had on my lower abdomen over 30 years ago. It took that long for my sigmoid to die. I now have an ostomy, for life, and a third of my GI track is gone. I have not found anyone, yet, who has had lymphoma, with their sigmoid killed from radiation wearing a bag over their stoma.

Learning to clean and replace your bag, once you get home from the hospital, can be an experience, and one not for sissies. Poop is your friend. It is the food you put in your mouth that the body could not use. When we forget it is food we may become fearful of poop and do not want to look at it or willing to have it get on our hands.

What to eat and what not to eat is my biggest problem. With a third of my GI track gone I have to take lots of meds to make up for what my body cannot get out of the food I eat. I do eat a balanced diet and try new things. The diarrhea I am having now could be a reaction to a new med I am taking, but it could be from the new food I am trying out. I eat mostly veggies. I do have some chicken because I am unable to eat beans. Plain Greek Yogurt is my go-to food. Cheese is one of my other go-to. Ice cream is my only bad food, it takes a month for me to go through a quart. Canned fruit with yogurt is much better than fruit in your yogurt. I live by myself so I do not have to cook meals, any suggestions in what to eat would be helpful.

mlmcg

Hi @mlmcg,

Thank you so much for sharing your story; I'm certain that Connect members in this group will appreciate your insights too.

You may wish to view these Mayo Clinic webpages which have some great information related to ostomy and diet:

http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-blog/ileostomy-diet/bgp-20056239
http://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

You can also listen to this Mayo Clinic podcast about ostomy misconceptions: https://newsnetwork.mayoclinic.org/discussion/ostomy-misconceptions/

Although this type of colostomy may be different, I'm tagging @dotty, who wrote about sigmoid colostomy with a Hartmanns Pouch; I hope she joins this discussion with her insights as well.

Thank you, most of the information I already knew or read on Mayo Clinic webpages. I had my surgery 3 years ago and have a thick file folder with info on ostomies, which keeps getting thicker.
mlmcg

I see that this group isn't very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven't read all the posts above yet, but maybe they'll be something new for me to learn or contribute. Fingers crossed this thread becomes more active... I will definitely participate. I'd really like to help people not be scared.

Welcome to Connect, @rwfliess. Indeed the ostomy group is new. Thanks for helping us to build a safe, welcoming space where people can talk frankly about living with an ostomy. I'd like to introduce you to @hanseron who had an ileostomy 50 years ago!

Rwfliess, what was the biggest challenge you experienced adjusting to life with the new ileostomy and how are you managing now?

I have both a colostomy and ileo conduit

I have experience with this with my dad who lived with an illiostomy for 20 years. The best advice I can give anyone based on his experience is to buy the bags with adhesive built in - you pull off the tape and press it around surrounding the stoma. Using The creams and adhesives never seemed to work even though it wasn’t as expensive. It was his experience that the bag would not stay in place and moved around. So I recommend getting that even if it costs a little more because the bag stays put and that is what you want to avoid slippage and an accident. Always take an emergency supply with you and especially when traveling. Costco sells disposable gloves which come in handy. No one would ever know that my dad was wearing a bag. He managed it well until he became bedridden. I’d rather empty a colostomy bag than deal with changing a diaper. It will become second nature for you after a while. God bless you all.

Welcome @ally56 and @cinnie.
Cinnie, great to hear that the ileostomy didn't stop your dad from traveling. What, if any precautions, did he have to consider when planning multi-day trips or out of country trips?

Ally, we look forward to getting to know more about you. If you're comfortable sharing, how long have you been living with the colostomy and ileal conduit?

I have had my costomy since 2001 and my Ileo conduit since 2002. I had to get both because of a procedure that did not go well.
It took me a long time to get over that.
Now they are just a way of life for me.