Ostomy Support Group – Community

ostomy, support, group, discussion, community, constipation, diarrhea, food blockage, continence, surgery, irrigation, leaks, pouches, bags, ileostomy, colostomy, ileoanal reservoir, j pouch, urostomy, indiana pouch, neobladder

Ostomy support group and discussion community

Ostomy support group and discussion community

A support community for patients and caregivers with ostomies. Discuss your experience with an ostomy, ileostomy, stoma, and more in the forums.

Gene testing, precision medicine, and shared information

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Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease — that is the nature . Read More

Pain above stoma & which type of doctor to go to concerning stoma issues

In: Not feeling well

  • June 3, 2019 1:04 pm
  • 5 Replies June 4, 2019 10:59 pm
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I have two questions. First, lately I have been getting pain right above my stoma. The pain comes quickly and catches me off guard, it lasts maybe a minute to five minutes, and then in subsides. It really scares me. It doesn’t happen all the time but it has occurred in the last four days. My second question is what type of a doctor should I see about this and other things related to . Read More

How should we improve hospitals?

  • Mar 13, 2019 10:24 am
  • 774 Replies June 4, 2019 9:44 pm
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Dear members, Many of us, including myself, have spent a good bit of time in hospitals, as a patient or a caregiver or both, and have ideas about how hospitals can improve. Dr. Harlan Krumholz, a cardiologist, healthcare scientist, and health care improvement expert at Yale University, recently asked the following questions on Twitter: “I am curious to know from patients, especially . Read More

How do you make medical decisions?

  • Nov 23, 2016 2:46 pm
  • 1,498 Replies June 4, 2019 7:03 pm
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Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel . Read More

Any advice on how to manage SuPrep at home for a colonoscopy?

In: Pouching options

  • June 4, 2019 3:51 pm
  • 1 Reply June 4, 2019 5:09 pm
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Help! It’s time for a now annual colonoscopy, my second since having a colostomy. Prepping at home last year was ridiculous, with the output volume instantly overwhelming my two-piece, closed-pouch system and very nearly getting everywhere. Drainable pouches are difficult because of hand weakness, and the position of my stoma, which is above the navel line on my right side due to my . Read More

What to expect after surgery

In: Coping after ostomy surgery

  • June 3, 2019 10:17 pm
  • 3 Replies June 4, 2019 10:40 am
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Hi. I’m about to have surgery in 4 days to have a tumor removed from my colon and I will have a permanent colostomy. I am so nervous and don’t know what to expect. I guess this hasn’t sunk in yet. My cancer was in remission for about 8 months and has recurred hence the 2nd surgery but this time with a colostomy. What should I watch out for and expect after surgery and the future? Thanks . Read More

Changing bag every day

In: Rashes and skin problems

  • May 3, 2019 10:36 am
  • 36 Replies June 4, 2019 1:55 am
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Hello everyone, I have just now after two and a half years, got to the point where my bag isn’t constantly itchy. I had some horrible ostomy nurses, who basically made it seem as if it was normal for my skin to always be at least slightly itchy. It is better then it used to be now, however, I am still needing to change it every day or else the skin becomes too irritated. So I have . Read More

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