Just diagnosed with diverticular disease.

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Hi everyone, I am new to the group and this is my first post. I am confused and upset. I hope you can shed some light on the matter. Yesterday during a colonoscopy I was eventually diagnosed with diverticular disease. I knew very well that something was seriously wrong for a very long time, as far as two years ago. I kept on going to the doctors but no joy. However, this year the symptoms got much worse, violent even. In February after a meal at home I felt so unwell that I got scared. Painful stomach, very odd, and I started vomiting blood. An endoscopy showed nothing in the stomach. At the time I had an inkling that it was related to my bowel problem. My symptoms are horrendous. Apart from the abdominal pain, cramps, lower back pain and the bloating, I experience very short periods of not going to the bathroom. But these are followed by attacks of diarrhoea so violent that it renders me incontinent. As soon as I feel I may have to find a bathroom it all just pours out of me without me being able to control it. This happens wherever I maybe, with no signs, a shop, the car anywhere. This is for me the worst part of my disease because of the embarrassment and humiliation it causes. It's so bad that I'm afraid of going out anywhere nice even if I try to prepare with inco wear. I am 66 but have always been quite fit and slim. And never incontinent apart from these episodes. They tell me I've got it, will always have it and nothing can be done to help.

I believe that the February episode was related because I remained ill for quite a few days and had a temperature and couldn't eat. I went through a bottle of gaviscon trying to relieve the discomfort.

The colonoscopy showed the disease but I fear that, because of my symptoms, it's gone further. Has anyone had or heard of symptoms like mine? Thank you in advance for any replies. Liliana

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15 Replies

  • Posted

    Hi Liliana I have had all symptoms you have except throwing up blood This diverticulitis is a lifetime disease unfortunately! Diet may ease some of your symptoms Goole Mayo Clinic diverticulitis diet There is a lot of information on this forum from people whom have had DD much longer than myself I do surgery tomorrow to remove a portion of my colon Unfortunately the antibiotics have very little effect on the infection I hope you get answers this crap stinks
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    • Posted

      Hi Ellen, just wanted to check in on ya, let you know I’m thinking of you and tons of prayers sent your way. Keep me posted on how things go. Hugs🙏🌺🌸

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    • Posted

      I bet you are, but your a strong women and nothing but great things coming your way after recovery😃😇 My thoughts and prayers are with you. 😉 Good luck , and try to get some rest tonight. 🙏🌺🌸🤗

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    • Posted

      My thoughts and prayers with you daily, hope surgery went perfection! Now just recovery time. Your almost there! Pls give update when you can. 🤗🎈🌷

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    • Posted

      Hi vickie I'm in regular room The surgeon change her mind and reattached colon to rectum and fluid bag for pp I will start liquid diet at 6 a.m. I have narcotics for push the little button as soon as every 15 wishing you a pain free day Thank you for your prayers and kind words 🍁🌳🌾

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    • Posted

      Boy vickie so much pain I pray there is light at the end of the tunnel She cut off 8 inches of my colon and removed my appendix she also cut off a couple inches of my small intestine I can't sit down or stand without help My temperature is 100.9 I'm suppose to go back to hospital if it gets to 101 surgeon said day 3 and 4 will b my hardest most painful days she said that is when the blockers where off I hope your pain free today!

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  • Posted

    Hi,

    You sound so like me again except for the vomiting of blood . I had to stop work just over 2 years ago at age 58 due to this disease. It has put a great financial strain on us aswel as I was the main wage earner. I genuinely dont believe the doctors believe you when you describe the problems it causes. I also have awful bouts of diarrhoea so violent that it leaves me incontinent. The amount of underwear I have had to throw away is unbelievable and it isnt something you can talk about like a broken leg or arm!  I dont wear light coloured clothing any more and always try to know where the loos are when venturing out .I did attend the incontinence clinics however the pads etc are like nappies and soul destroying so I stopped going and now just buy my own. The nurse at the clinic agreed with me however said pads that would be really useful have been taken off the NHS availability and the ones that are available are really for bed bound patients, thankfully im not there yet!!   

    I am due to visit the consultant again next month after having 3rd colonoscopy last January however again I dont hold out much hope.

    I take each day as it comes and accept I will always have daily pain and bloating together with other symptoms.

    Good luck and try and stay positive xxx

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    • Posted

      Hi Caroline and other DD people.

      Thank you for being so honest when you wrote of the practicalities of handling DD embarrassing episodes. No need for me to write much more about this (I'm writing at tea time!!!) except to refer back to your comments regarding underwear and not wearing light coloured clothing.

      Did any of us ever think in our younger days that this would happen?

      I do believe some people will be thankful to hear they are not alone in having these problems.

      Boots chemist sell packs of disposable underwear. Not pretty, they are also bulky, but I have used them on a couple of occasions over recent months to help me if  concerned that the nearest "ladies" is not nearby.

      The bloating sucks doesn't it?

      xx

       

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  • Posted

    My symptoms are similar to yours except vomiting blood.  I would check into that issue.  I have read on this forum of blood and mucus in your stool but not what you have mentioned.

    Have you mentioned that to your doctor?  Maybe something unrelated to DD.  A POSSIBLE irritation of sorts.

    i know skins , seeds, raw veggies and hard to digest red meat and nuts bother me. 

    Hope you get some answers quickly.  Eat light and take a priobiotic if possible.

    ps. I have had the frequent/ incontintent issues.  That coULD be IBS. YOU CAN HAVE BOTH. I do!

    prayers🙏

     

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  • Posted

    Sounds like SIBO/ IBS you should get a Lactulose breath test , and it could be all about food you eat. Get tested for food allergies and a complete stool test to check for Candida, parasites and other gut bugs. Your colonoscopy only showed Diverticular disease not no infection? Or inflammation or leaky gut? Problem could be in small intestines. Hope you get it figured out and find some comfort. 🙏🌺🌸

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  • Posted

    I do so feel for you. What part of your bowel has the diverticuli? It's normally the sigmoid part, but it could be you have a considerable amount. The problem with DD is that what food suits one person has the opposite effect on another. Keep a diary for what you eat as you may be intolerant to some food groups which is making the gut irritated and causing severe diarrhea. Try taking Fybogel, you can buy it over the counter and see if that helps with a 'normal' stool. Unfortunately when we are in pain and stressed out it makes it worse because your digestive system also plays up when your anxious and stressed and you end up in a vicious circle of pain and anxiety. Let me know how you get on.

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    • Posted

      Hi, 

      I had first colonoscopy in 2014 which showed DD  in sigmoid . This consultant told me to look it up on google ! I had been  lucky up to this point and not had major flare ups , just terrible bowel issues ( diarrhoea mainly ). However not long after started the pain and flare ups which were treated with antibiotics and rest. My GP then referred me to another specialist who ordered another colonoscopy and further tests. Again DD diagnosed but no treatment , just basically live with it. Since then had further flare ups but luckily only one A&E visit. I now try to follow rules - if pain starts - liquid diet and monitor , sometimes I manage without antibiotics. This has continued for some time so another GP referred me back to specialist who ordered another colonoscopy but guess what saw a different specialist for the results who has basically said IBS is the cause of all the problems! Not the DD . He said only symptom of DD is pain ! I said to him so its a mixture of DD and IBS , but no its all IBS even though there is definite pouches in sigmoid! He has referred me to a dietician so hopefully that might help. I have tried Fybrogel but it made no difference. Just  think I will live with it and ignore doctors . I had to give up work at 57 so its a pain . Sorry for the rant again but thought I would give an outline of my situation . regards to all fellow sufferers xxx

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    • Posted

      It's not true that the only symptom of DD is pain so the doctor is wrong. You could have a food intolerance. It is hard though to keep a food diary and see what foods seem to kick it off. Just trial and error because it seems what one person can tolerate another person can't when it comes to food and DD. I must admit, being diagnosed just before last Christmas, that apart from not eating seeds you get no support or advice from anyone about the 'dos' and 'donts', dreadful considering how many people are diagnosed with DD. Hope things get better for you.

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