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
Have you been having symptoms - have you had any diverticulitis flares? Before jumping into such a life-altering operation, I would definitely recommend a second opinion and a discussion with a surgeon. There might be some alternatives! I have diverticuli throughout my colon, but had surgery to remove only the part that was the most severe. No bag - and I feel great.
Thanks Dee The surgeon has said its so severe he couldn't get his camera through, so had to have ct scan and was diagnosed this Monday with severe diverticula disease he wasn't supportive in the least no diet info or anything just needed the op sooner rather than later, he was also smirking so him in a private clinic although as an nhs patient. I didn't care for him at all. I took early retirement from nhs 2 years ago at 60 after 26 years
to be fair yes i've had flare ups for years thinking it was ibs so watched what I ate but was on painkillers ibuprofen and then naproxen think this may have triggered some of the flare ups But now this low residue diet is in completes opposite what were told to eat to prevent diverticulitus
good news you're ok now though
I fully agree with dee...talk to a surgeon. I also had only the worst part removed in August. No issues since then. That is a huge decision to make and it may be totally necessary. I would just get another opinion first and maybe any other solutions. Good luck to you and well wishes!
It's my surgeon that has recommended this and he was adament that it was needed sooner rather than later or it would be life threatening if it burst im scared to death of it all its a ticking time bomb
sorry glad youre in recovery now do you have a bag? you're very lucky if not but so happy for you
Hi Anne, I would get a second opinion ! I had a colonoscooy @ 52yo and told I had extensive diverticulosis but never had a flare. My first flare came after a stressful run @ 58yo that lasted 3 months. And 2nd flare 18 months later that lasted 5 months ! I was so sick! I had the surgery done robotically. No colostomy. I feel great now! I still have diverticulosis but no real problems. The surgery was easy and minimal pain. 18 inches was removed. Best of luck but would discuss with another surgeon.Please stay away from the anti inflammatory drugs they started both flares for me. I remember how scary it all was. Take your time making this decision. Its a big one!
Kate
I also agree, you should get a second opinion. That way you can be better satisfied with what ever choice you make. I had surgery to remove sigmoid, no bag. I'm doing well now also. If you are not having active flare I would seek a second opinion just at the chance you may have a better option. My heart is with you.
I agree you should seek a 2nd opinion, certainly as you seem to have taken a dislike to the one you saw. When the local NHS hospital tried to do a colonoscopy on me in 2017 they too could not insert the scope. I also had a scan and was told severe Diverticular Disease with thickening and twisting of the colon. But although one consultant said surgery, he was overruled by his boss who said manage with diet, so opinions do differ. In fact the exact words in the letter to my GP and I were "only Diverticular Disease, a benign condition". I had been having flares since 2000 (6 in total requiring medication), but I have been fine since. I adjusted my diet to have soluble fibre, not insoluble and drink lots of water. I also take a fibre supplement daily in half a pint of water and I make sure I empty regularly without straining. But the scan may have shown signs of something like a fistula developing, so you need to ask just why surgery is so urgent.
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.
No I do not have a bag. Thank God. My surgeon was really great.
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 :(
Katealso , how long was you on antibiotics during your two flares and which ones did they give and how long to take them?
thank you yes i've been under a lot of stress over the last few years and been taking anti inflammatories for shoulder and back pain and since christmas we have had 5 bereavements didn't think the year could get worse. The surgeon wasn't helpful just that it had to be removed sooner rather than later and it would be a bag glad you didn't need one are you in uk?
thank you it looks like second opinion is needed at the moment having a small flare up just started anti biotics monday but im awaiting blood results to see which they should have given me are you uk ?
Thank you it seems our problems are similar i have been guilty of not eating properly in the past and definitly never drunk enough water 26 years of working for the nhs snatching food when you can He said that it was near my bladder but no fistulas or cancer how he could tell without biopsies i dont know he said better to have as planned op rather than an emergency thanks for the advice glad you're ok
No Annie I am in the US. I'm praying you do get a second opinion and get more options. Best wishes for you. Keep us posted if you like.
I was on Clindamycin and Flagyl with both flares. So sick with the antibiotics. They never worked for me. I was on them usually 10 days and would refill them since the pain and diarrhea were still present. With the second flare I was on continuous antibiotics . And pathology showed diverticulitis at the time of surgery! I never had any relief!
No Im in the US. I know we do things differently. Seems more open surgeries and bags are done in the UK.. I wish you the best!
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 !