Diverticulitis Advice

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I've recently read several comments about diverticulitis, and I have some serious advice about it. If you think it might be diverticulitis, or if someone (doctor, friend, etc) suggests/says that's what your problem is, PLEASE PLEASE PLEASE do not take their word for it and modify your diet to try to accommodate it. Get the MRI, get all the the medical tests done, PLEASE, and find out for sure. Rule out everything else,with proof, not suppositions.

In 2006 my mother was 'diagnosed' with diverticulitis. She didn't get any further testing because the doctor was confident that he knew what the problem was. On August 29, 2012 they found out the true cause of her symptoms. She had kidney cancer, and by that time the tumor was the size of a football, extending from her pelvic bone up to her rib cage, and filling the majority of her left side. The doctors said it had probably been growing for 10 years, and a simple MRI would have discovered it years ago. By the time they knew what they were dealing with there was nothing they could do except to control her pain until she died on January 23, 2013. If my mom had been given an MRI back in 2006 when she was originally "diagnosed" with diverticulitis, the tumor would have been discovered, it could have been removed, and my mother would still be here, living a long, full, productive life.

Please, please, don't assume the doctors are right. Make them prove it to you. It's your health, and you deserve nothing less than the facts. Assumptions about your health can kill you. Get the facts. Know for sure what you are dealing with. Only then can you truly move forward into a brighter future.

Replies

  • socioseguro
    socioseguro Posts: 1,679 Member
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    Hi

    I am sorry for your loss.

    Many thanks for sharing your experience

    I wish you the best
  • Willow_Raine
    Willow_Raine Posts: 56 Member
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    Thank you. I am sharing this in the hopes that it might save someone from the same fate my mother (and our family) endured. I know my mom would want her experience to bring about something good.

    No condolences necessary. It has taken a toll, but I am okay.
  • nickle2dime
    nickle2dime Posts: 23 Member
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    Great advice. I hope people will read and remember your post. I was diagnosed with diverticulitis after I had a colonoscopy a few years ago. Doctors didn't do a colonoscopy when they suspected she had diverticulitis? I saw the images of mine and it was very obvious that it was what was going on in my intestines. How did they determine she had it without a visual? I know misdiagnoses happens everyday, but I'm still shocked when I hear about it. This never should have happened! I'm very sorry for you and your mother's needless suffering.
  • Willow_Raine
    Willow_Raine Posts: 56 Member
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    I don't know why other tests weren't done. It may be because she didn't have any insurance, and no means to pay for it. =( I know she tried to stick to a certain diet, and when she would be in pain she would blame herself for not following the diet closely enough. Then she would try harder. I just can't imagine what she went through. A tumor the size of a football, in her side. It's just mind blowing.

    It's all just so crazy. In my family, on both sides, we tend to have very long lives. Hitting 100 is not uncommon. Reaching 90 is almost guaranteed. So it is a double shock to have lost both my parents long before their time. My dad also died from medical negligence. He had a heart cath done at a hospital that was not able to provide the medical services necessary if something went wrong... and something went wrong. Plaque was dislodged and caused a series of strokes. If the hospital had the necessary medications to counteract it, my dad would probably still be here as well. As it is, I lost my dad at 67, and my mom at 70. It's still hard to believe that I don't get another 20 years with them.

    Anyway... I just want people to take control of their own health. Be a pain in the butt to the doctors and hospitals and clinics. Ask questions, demand answers, demand proof, and do your own research. No on can advocate for your health as well as you can. Listen to your body more than you listen to your doctor's, and if the two of them aren't in sync, find someone that can help you. A few years ago I began to experience horrible pain in my pelvic area. It felt like the worst possible bladder infection a person could have, combined with pulsating muscle spasms. Some times I could barely walk, let alone stand. Pain killers did nothing for it. Over the course of 9 months I saw 5 different doctors, was in the ER twice,and had more tests than I could count... and still no one had an answer. I felt like I was going crazy, and I felt like no one believed me. That is, until I saw a gynecologist that discovered a cyst between the bladder and the vaginal wall. Urethritis. That's what I had. Such a simple thing to find and fix, and no one had even checked. I had even seen a bladder specialist for months and he never found it. After the gynecologist found the problem she put me on high powered antibiotics for a month. In two weeks time the pain was completely gone. For 9 months I suffered, and no one advocated for me. I had to learn how to do that for myself, and I'm glad I did. I knew there was a problem. I just had to find the person that could give me the right answers, and that took awhile. I'd hate to think of what it would be like if I had given up and resigned myself to years of pain instead.

    Don't give up. Don't give in. Find the truth. You'll be glad you did.
  • vburke003
    vburke003 Posts: 5 Member
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    Would a CT Scan be same thing as an MRI? I’ve had 3 CT Scans and they said it’s diverticulitis.
  • spiriteagle99
    spiriteagle99 Posts: 3,676 Member
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    vburke003 wrote: »
    Would a CT Scan be same thing as an MRI? I’ve had 3 CT Scans and they said it’s diverticulitis.

    https://www.healthline.com/health/ct-scan-vs-mri#mri
  • nooshi713
    nooshi713 Posts: 4,877 Member
    edited November 2022
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    As a medical provider, I see diverticulitis in ER regularly. I would NEVER diagnose it for the first time without imaging. Even if CT scan shows “thickened sigmoid colon with inflammatory stranding” which is very suggestive, we still recommend follow up colonoscopy because that thickening of bowel could be a mass instead of just inflammation.

    I think most of my colleagues would do the same. The only people I would consider diagnosing this on without imaging is if they have been seen multiple times with prior imaging that showed this over and over and they are adamant that it feels similar.

    I’m sorry that that happened to your mom. :(