Diverticula disease -Colostomy needed

Edited , 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

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  • Posted

    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.

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    • Posted

      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

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  • Edited

    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!

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  • Posted

    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

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    • Posted

      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?

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    • Posted

      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!

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  • Posted

    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.

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    • Posted

      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 ?

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  • Posted

    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.

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    • Posted

      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

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    • Posted

      I think how you handle largely resides on your life.

      I am a Male US citizen in my 30s that works in IT, with absolutely no family or friends myself to help me financially or psychologically, I don't know how I would have survived a permanent bag.

      My job of 6 years was about tired of my constant medical problems with Diverticulitis then skin issues with my bag, I was in a horrifying mental state.

      However a coworker had an adult niece mom who had a temporary colostomy who never got it reversed, because the possible complications was not worth it, but she had a huge family with support and didn't have to work with family to help financially.

      My point being the most important thing is to look at your support system, like the person here offering their phone number, unless you have a huge loving family (completely unlike me) you need to find people in life for at least mental support.

      If not for my fiance I would not be here today, I am already struggling with depression and anxiety that people mock, and made enough money during the surgeries I have 10s of thousands in medical debt that has been absolutely crushing me the last 2 years.

      I feel for you big time and hope you have a good support system, or I'd start making one before the procedure, and it might be worth considering your financial situation as it may make more sense to lower your income to qualify for reduced or free surgery - The ongoing financial burden / harassment for years is absolutely terrible to endure on top of the medical and psychological challenges.

      Feel free to PM me for contact info if you need as well, and this community is great for support, as we are all here going through the same struggles in different situations.

      I really wish you the best, stay strong, and please reach out if you need someone to talk to please!

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    • Posted

      My cousin did develop a fistula between his bladder and bowel and required emergency surgery. He had a permanent colostomy bag for the last 10 years of his life. You are the first person in the UK I have read of being offered elective surgery. It' s hard enough to get essential surgery on the NHS, so if you decide to go ahead, you might have a VERY long wait!

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    • Posted

      Hi this is exactly what my surgeon is afraid of he doesn't want me to be brought in as an emergency, but he never said when the op would be or whether I wanted to think about it nor did he give me any diet advice just said low residue, of which i'm confused as various diets on line and the one i've obtained through our trust at my request are conflicting,

      Any advice will be gratefully received

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    • Posted

      Thank you for your kind words, you seem to have gone through the mill (as we say in uk) Glad you are recovering, I hope you have better health going forward and you can pay off your debts, We are so lucky to have our NHS totally free. Stay strong for your fiance onwards and upwards,

      I have a wonderful supportive husband 2 daughters, 3 grandaughters, and a new grandbaby due in a few weeks, and some very good friends, I feel sad for you in that your fiance was your only support, I hope she had support as it must have been tough on her to

      I will keep you posted thanks again

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    • Posted

      Well as he's the top man, nobody's going to go against him. The following is an NHS guidance leaflet. I couldn't copy in the tables but it lists the foods you can and cannot eat. If you load the pdf you should be able to print it.

      https://www.thh.nhs.uk/documents/_Patients/PatientLeaflets/dietetics/Low_Residue_Diet.pdf

      Low-residue diet Information for patients

      This leaflet provides information to patients following a low-residue diet.

      Why follow a low residue diet? A low residue diet is recommended when people need to avoid foods that may irritate an inflamed bowel or obstruct narrowed parts of the bowel. A low fibre diet may be

      recommended:

      • When experiencing diarrhoea caused by a flare-up of inflammatory bowel disease such as Crohn’s disease or ulcerative colitis
      • During a result of pelvic or abdominal radiotherapy
      • To prepare your bowel for investigations or surgery

        What is a low-residue diet?

        Certain foods containing fibre normally aid the movement of food and fluid through your gut. This ‘roughage’ adds bulk to the stools and is usually encouraged as part of a healthy diet.

        However, in certain conditions and/or in preparation for particular procedures, it is advisable to avoid these foods, because they can leave behind a ‘residue’ after digestion.

        A low-residue diet may help to prevent blockages in your bowel by reducing foods which are poorly or partially digested. This diet may also be recommended when reintroducing food after surgery or after following a liquid diet.

      Handy hints

       Eat small meals at regular intervals (every three to four hours)

       Chew food slowly and thoroughly

       Avoid food that is too hot or too cold

       When introducing new foods, introduce only one at a time. This will help you to rule out foods that aggravate your symptoms

       Avoid large quantities of caffeine or alcohol as these may worsen your symptoms

       Avoid rich sauces and spicy foods if they worsen your symptoms

       It is important to maintain a good variety of foods, especially if you follow these guidelines for more than a few weeks

       Large volumes of milk may not be well tolerated. If so, just use small quantities (in tea and coffee, for example)

       Avoid fizzy drinks if they worsen your symptoms

       Be cautious with ready meals and pre-prepared foods as they may contain some of the ingredients known to aggravate your symptoms

       If eating is difficult, speak to your dietitian about ways to increase your calorie and protein intake to ensure adequate nutrition. Nutritional supplements may be considered. Your dietitian may recommend a multi-vitamin and mineral supplement.

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    • Posted

      Hi again can i ask what you mean by soluble fibre what do you eat and what fibre supplement you take, ive found this week being on the low residue diet i'm not going as often so think i do need some sort of fibre, ive done a shop today and bought lots of the recommended foods, i don't know how i'm going to get on i love my herbs, veg,salad, n spices, n beans. Have you any more recommendations please

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    • Posted

      This is an article I found. I have 2 soluble fibre supplements. Fybogel is prescribed by my GP for my Diverticular Disease. Since being diagnosed with diabetes I have switched to Inulin as it has less carbohydrates. Both are powders which you mix with half a pint of water and chug down before they turn into a thick gel. Veg, salad, beans are all sources of soluble fibre, but insoluble fibre includes skins, pips, seeds.

      Learn more about Soluble Fibre

      Last week our article gave you tips on how to increase the amount of insoluble fibre in your diet. This week we want to introduce you to the benefits of soluble fibre and how to add it to your diet.

      Dietary fibres are found naturally in the plants that we eat. They are parts of plant that do not break down in our stomachs, passing through our system undigested.

      All dietary fibres are either soluble or insoluble.

      Both types of fibre are equally important for health, digestion, and preventing conditions such as heart disease, diabetes, obesity, diverticulitis, and constipation.

      Soluble fibre

      Soluble fibre dissolves in water.

      Soluble fibres in the foods we eat attract water and form a gel, which slows down digestion.

      Soluble fibre delays the emptying of your stomach and makes you feel full, which helps control weight.

      Slower stomach emptying may also affect blood sugar levels and have a beneficial effect on insulin sensitivity, which may help control diabetes.

      Soluble fibres can also help lower LDL (“bad”) blood cholesterol by interfering with the absorption of dietary cholesterol.

      Sources of soluble fibre:

      oatmeal, oat cereal, oat bran

      apples, oranges, pears, strawberries, blueberries,

      nuts, flaxseeds, psyllium,

      lentils, beans, dried peas,

      cucumbers, celery, and carrots.

      It is easy to increase your intake of soluble fibre:

      Start off your morning with a cup of cooked oatmeal (2 grams of soluble fiber).

      Pack an orange for a mid-morning snack (2 grams).

      Toss 1/2 cup each of kidney beans and carrots into your salad at lunch (4 grams).

      Eat a pear for an afternoon snack (2 grams).

      Enjoy a cup of broccoli with dinner (2 grams).

      Bingo! You have just added 12 grams of soluble fiber (22 grams of total fiber) to your diet!

      Whenever you increase fiber in your diet, you may want to do it gradually in order to let your body slowly get used to it. Also, make sure to drink plenty of fluids to help avoid constipation.

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    • Posted

      thank you thats very useful i will speak with my GP on Thursday, ive struggled this week and found i'm not going like i used to, my flare up has calmed down

      thank you very much for your help

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