Patients Crohn's disease
Digestive ostomy for IBDs: causes, equipment and psychological impact
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What is an ostomy?
A stoma is a surgical diversion from the intestine or colon to the skin. Temporarily or permanently, stool and gas will be evacuated through this stoma and collected in a pouch. Over the months, the stoma will become narrower and it may be necessary to choose a smaller pouch.
What diseases can lead to an ostomy?
Digestive tract cancer, invasive cancer affecting neighbouring organs, chronic inflammatory bowel disease or congenital malformation are the main causes of a stoma, especially if the rectum, colon or intestines are removed.
How to choose your equipment?
If the choice of equipment is made between the patient and health professionals according to morphology, skin and lifestyle, each patient can change their equipment themselves with a little training. It can be a one-piece device, very flexible, discreet and easy to install because there are pre-cut sizes available. Wearing time is generally reduced from 12 to 24 hours. Another two-piece device (a holder with skin protector and pouch) is recommended for fragile skin because the holder remains in place for 2 to 3 days; of course, the pouch is changed as often as necessary or emptied in the case of liquid or pasty stools.
What do our Carenity members think about the stoma?
" Life has been good since then. I can go out without worrying about finding toilets, go to the pool, the sea and play sports".
"My illness caused a depression. The stoma makes it possible to feel better physically but it is hard to accept psychologically"
"My husband still has trouble looking at himself naked in front of a mirror, but the stoma has changed his life... for the better! »
" It took me a little while to get used to cutting my equipment, but it's just a matter of cleaning the stoma, it's ultimately very easy to manage"
"The devices are more and more efficient, we always find the one that suits us. Feel free to ask to try several of them "
And what is your experience with the stoma? Do you have any questions about this?
Let's discuss together all the practical and psychological aspects of stomie!
Have any of you considering getting an ostomy? Did your doctor offer you this a choice to help with the treatment of your Crohn's?
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Also, we recently did an interview with a member who has an ileostomy, if you would like to read her testimonial then you can find it by clicking HERE.
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Josephine, Community Manager
@JosephineO I already have an ileostomy I wasn't given an option unfortunately I went down to theatre for what we thought was another normal resection i had already had 4 in the past but unfortunately when I came round from the anesthetic I had the ileostomy, I was told that more of the bowel was infected than they first thought and they had no choice but to take so much that I had to have the ileostomy and I had had so much intestine removed now that it is permanent.
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I was diagnosed with crohns at 21 and had several flare-ups and gallstones which necessitated surgery. I stubbornly refused any medication and managed to complete degrees at Uni, had 2 children in spite of advice to the contrary. I worked abroad for a couple of years and always had a mental map of where the nearest loo was located. However at 45 (around the time of my menopause I had a serious attack and knew from the first acute pain that I was in for trouble. The consultant took one look at me and rang the hospital. He was very annoyed that I had not had any follow up for several years and said there was no choice but an ileostomy. I refused absolutely. Eventually, another consultant was called for a second opinion and he said to wait and see but I was prescribed heavy doses of steroids and in spite of (or because of) this I was rushed back into the hospital a few weeks later with Peritonitis and a pelvic ulcer......still refusing a stoma of any kind! The surgeon was roused from his bed and I lapsed in and out of consciousness still refusing to accept an ileostomy. When I came to the surgeon smiled and said that he had spent 5 hours in surgery and no stoma but not much bowel left but assured me that it would give me another 10 years. That was 30 years ago and I am still in remission and enjoying the good red wine and sunshine of southern France. My French doctor claims that it is because of the quality of the Medoc wine but I believe that it is happiness and the love of a good man. I still need a mental map of all public toilets...but that is a small price to pay.
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