Diverticula disease -Colostomy needed
Posted , 10 users are following.
Hi i'm Anne and I've just been informed following a colonoscopy and ct scan that i have very severe diverticular disease in most of my bowel, and I need an op to remove it meaning i will need a bag for life Dr has said it will be non reversible, i need to follow a low residue diet
I know I will need the op soon and I am scared to death of whats to come and how you cope, any help and support will be greatfully received
thanks
0 likes, 32 replies
CarolDR AnnieFannie
Edited
Anne, my daughter who is 24 years old has two permanent colostomies she has had it since the age of 4 years old the permanent one and she has a fistula thats another type of stoma that drains infection from her stomach on a regular bases so she doesn't get enterocolitis again. She got her first colostomy at 3 weeks old and kept it till age 4 and then got her permanent one. My daughter and I can help you with any questions or support you would like. I can send my cell phone number should you ever want to ask questions concerning the colostomy and skin break downs and how we care for ours from all these years. I can send my cell phone number in private message if you like.
rommon AnnieFannie
Edited
You get used to it amazingly fast, though I had mine for 8 months only, I'd get more opinions from other surgeons about it being permanent.
People live normal lives with colostomy bags, it's not easy sometimes with the skin issues, and supplies can cost a lot.
I'd find a local colostomy support group to discuss your situation and that may help ease your mind, boy am I sorry to hear that 😦
Bricklayer AnnieFannie
Posted
1st thing you need to do , is change your consultant , it is SO important to be able to relate to him/her , and they to you . There's nothing worse than being talked down to , and be made to feel uncomfortable .
I had dealings with a Colorectal surgeon , who just had THE worst bedside manner, I told him so too ! He was horrified , but I felt he needed telling .
I have since changed the consultant , and am much happier .
Good luck !
jacob0373 AnnieFannie
Edited
why must you have a bag? You do know you can live without your colon. The surgeon simply connects your small bowel to your anus. Only downside of this is frequent bowel movements. I'd get a 2nd opinion if I were you mate.
AnnieFannie jacob0373
Edited
Hi Jacob
I am new to all this the surgeon who is the top one at our NHS trust, advised this, i was in total shock when he told me i didn't ask enough questions I am back with my GP on Thursday but need more bloods done before them will make a list of possible options to ask them
Hope your pain has lessened and you will get home soon
jacob0373 AnnieFannie
Posted
I think you getting a bag is absolutely ridiculous. If your colon is completely rubbish just have it removed. You can live without one mate. If the skint NHS won't do a resection w/o a bag go private insurance for a month or two just to get your surgery done. Sorted. A bag should be the last resort. I really feel you need to get a surgeon who'll satisfy your needs. Just my opinion mate. If it were me I'd opt to have a total colon removal with resection of small bowel to your anus. Worst outcome of that procedure will be several bowel movements a day. Too me that's far better than a bag. I truly implore you to find a surgeon who'll do the surgery without a colostomy. Take care mate😊👍🏻
AnnieFannie
Posted
Thanks again I will hopefully get further after next GP Appt but although brilliant the nhs does have many problems and its a postcode lottery(zip code)
take care