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Hi All I had my sigmoid colon removed in 2015 after 4 infections in 6 months I ended up having 2 operations in 10 hours due to the first laparoscopic op going wrong second op was a full open surgery with a ilestomy bag fitted I have lived with this bag for 2 years now and in July this year it was made permanent due to the DD spreading I have lost so much weight and confidence since it all happened but I'm living and for that I'm grateful it's a awful disease that seems to be under estimated and unsupported my stoma nurse said it is rare to have a permanent ilestomy with this disease and if any it would be a colostomy making me feel even more alone than I already do is any one else living with a ilestomy (might I add a extremely difficult ilestomy at that) it would be great to hear how others are coping with this disease as well as a bag thanks xx
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Guest sarah271820
Posted
What makes DD spread? Why isn't there a cure? Why does 90% of the time diet does not help long if any? Why do some bleed/mucous and others don't? Why does it keep getting infected even though we watch and are very careful with what we eat and such? This DD is making me a nervous wreck!
sarah271820 Guest
Posted
Hi crosado8 I have asked all of these questions a 1000 times over the last nine years and the best they have come up with is all the time it's diverticulosis it can be managed and kept dormant but once it has become diverticulitis it's irreversible I have struggled to understand why a medication or procedure hasn't been developed to cure this disease and why it isn't as important as other IBDs I feel like I've been shoved into a uncaring corner left to try and figure this mess out all by myself I spent 15 years with IBS going 13 times a day with raising temperature and bloating now with this bag I am emptying 13 times a day with dehydration and tiredness beyond belief all I wish for is a normal life I think there needs to be a better support network to cope with this disease diets I've tried them all and like you said nothing really helps 1 week everything will be clam and fine and then eating the same thing a week later sends it in a frenzy I think the one thing harder to deal with than the disease and symptoms is the mental effect it has on us x