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Ostomy: Adapting to life after colostomy, ileostomy or urostomy
It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.
Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?
Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?
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I was out there two weeks ago and saw him then. I did have one image with me but he wanted to see the disc with more images to see if it was determined how long stricture was.If it could be cut out it would involve surgeon and robotic surgery. I am being told it would probably not be successful but not conclusive for me yet.
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1 ReactionI have an ileostomy and I will not have it reconnected. I have Lynch Syndrome which means you have an 80% chance of getting cancer. I have a terrible time changing my bag. It will not snap in easily and leaves me exhausted. I also get leaks, sometimes in the middle of the night and even in a restaurant. I changed bag brands and I think this new bag will be better. I have to set my alarm for the middle of the night to get up and empty my bag. Thus, I am losing valuable sleep time. My ulcerative colitis no longer bothers me so I am glad I had the colectomy. I will be glad of any tips anyone can provide for living with a ileostomy. Blessings to all.
It sounds as if you are not having a good time with your ileostomy. How long ago did you have your surgery? The reason I asked was I had problems getting use to the entire process of how to put on a new bag, emptying it and living with the leaks. After 3 years, it doesn't seem it was that long ago, I have things almost figured out. I do not have an ileostomy, but most all of my ileum has been removed so I had, and have, lots of diarrhea. I have a one piece pouch because of my scar and it sounds as if you are using a two piece system. I have never use a two piece so I do not have experience with them, but if you find the new system a better fit, good for you. If you still feel it is not right keep trying until you find a system that is what you need. There are lots of types for every type of body, for you, to choose from.
I wish I could help with your leaks but using a one piece system, I can not help you. If you are not getting a good seal when applying the base that could be the problem. I have noticed that taking lots of hot showers can break the seal, I have no idea what soaking in a tub does. There are waterproof tapes that can be used to seal the seal on the pouch when you are having trouble with leaking. If you are having diarrhea see a GI doctor, if you have not already. You probably will be taking lots of pills to make up for what the ileum can not do. If you have not seen a nutritionist, you may want to know what to eat and what you are unable to eat and when. Your life style may change. Do you eat just before going to bed? That may have to change if you are. Be sure to empty your bag before you go to bed which can also help with your middle night runs to the bathroom. I still have times I have to empty my bag in the middle of the night.
Do you know who else in your family has Lynch Syndrome? Does anyone also have an ileostomy? The word cancer can be very scary. When the doctor was looking for cancer in me, I had to get over the fear of the word. Once I was able to do that I had to deal with the death of my grandparents. That was in 1975, I am still here. The doctors figured if they could get me down the road another 20 years they had done their job. They not only did their job I may have outlived them. Good luck.
mlmcg
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1 ReactionI had a Total Colectomy 2 years ago. At first I was doing well once I got to my new normal. For the last 7 months I have had extreme pain in my stomach. After a ton of tests one thing that they discovered is that I an not digesting my food. Has anyone experienced this. Help!
I had a right colectomy 2 years ago and my gallbladder removed 1 year ago-no colostomy. BUT the last 6 months I have had chronic diarrhea and rarely can get by without using Imodium frequently. Any suggestions?
If you have chronic diarrhea run, do not walk, to see your doctor. Over the counter meds are not what you need. If you do not get help from the first doctor see another one. I take two different meds for my diarrhea. Good luck
mlmcg
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1 ReactionThese dates are old..Is it still running?
Hi, I am Richard. I am told that I need an ostomy so that I don't get any further infections. I had prostate cancer in 2005 and had radiation. I had a non cancer lower bowel resection in 2002 with about 12" of lower bowel by rectum removed. I now have a fistual between the bladder and the colon in that area so that my bladder empties into my colon which also means some colon matter gets into my bladder causing possibilities for infection. After 2 years like this, I have had 2 bad infections lasting about 10 days each and taken care of by antibiotics. How bad does it have to get before I have to get an ostomy? How bad were the others on this site before they had the surgery?
Hi @readingteacher, yes this discussion is still active with recent posts in June and July of this year. Do you have an ostomy?
Katie (@obrkatie) I'm wondering if you saw the responses to you in this discussion:
- Total abdominal colectomy https://connect.mayoclinic.org/discussion/total-abdominal-colectomy/
@tressa has your diarrhea issue been resolved yet?