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    • #31151
      Colleen Steele
      Keymaster

      I decided to make this a topic because it looks like there isn’t a lot of research and information on this condition.

      I am asking for myself. New members…I’m a caregiver and do not have PH. I have just been diagnosed with lymphocytic colitis, which is basically inflammation of the large intestines.

      What I have read, there isn’t a lot of research and information on this but what is available, describes my symptoms to the letter.

      It’s commonly misdiagnosed as irritable bowl syndrome. I spared no details when I met with the doctor prior to my colonoscopy and I think that is what saved me going down the misdiagnosis path. The doctor said to me, “I was thinking IBS at first but now I don’t think so, I think you need a colonoscopy.” Which is apparently the only way to diagnose lymphocytic colitis.

      I’m relieved it’s nothing serious but also relieved to know what is causing my symptoms. I haven’t been instructed yet on what if anything I can do to deal with it. If you have experience with this I would appreciate your input.

    • #31155
      Jen Cueva
      Keymaster

      Wow, @colleensteele, thank you for sharing. As I mentioned in my response to your update, a friend was diagnosed with this years ago. But now, after reading the update when you share it, “is often misdiagnosed as IBS”.
      ai has MS and was diagnosed with lymphocytic colitis

      My friend Traci has MS and was diagnosed with lymphocytic colitis over 10 years ago. Now, I really want to reach out to her and ask if they continue to tell her that this is part of her IBS.

      I appreciate the update. I hope and pray that you can find some relief and that this condition remains benign for you.

      How are your symptoms this week? Any worse or improved after your procedures?

      • #31158
        Colleen Steele
        Keymaster

        @jenc the one thing that has me concerned is I read that they believe there is a link between this and autoimmune disease. A doctor I had total faith in, but moved to CA years ago, believed I have some type of autoimmune disease but never enough markers to pinpoint the exact one. Lupus was always one on his radar.

        I feel like it’s one more thing pointing to that but I don’t think any of my new doctors are considering autoimmune. Maybe I’m just paranoid from what Cullen went through, but I really have an increasing fear that something is getting missed.

        I am really grateful that this one doctor went with her instinct that it wasn’t IBS. The prep before the colonoscopy was not fun but getting a proper diagnosis…worth it!

        I have improved since the procedure. TMI…probably because they had me cleanse out my system prior.

        I’m sorry your friend has this too. If you talk to her I would like to know if she is being treated for it in any way.

        • #31171
          Jen Cueva
          Keymaster

          @colleensteele, Ughh, I, too, was told three times through the years that I have a possible autoimmune disorder. But, with all the testing, my numbers are just below what they want to see with the biomarkers.

          Like you, at times, I feel that they are missing a part of my medical puzzle. So, I am sorry that you, too, have this gut feeling. It can make you feel like they discounted you and your symptoms because the numbers were not there. So frustrating! As a mom and a caregiver, I am certain that your gut instinct is correct.

          Is there a way to contact that doctor that you really liked? Were they functional medicine doctors? I know that many functional doctors tend to base their practices a bit differently.

        • #31178
          Colleen Steele
          Keymaster

          @jenc the doctor I trusted achieved another degree and is now a head honcho at a hospital somewhere in CA. I’m not surprised and definitely well deserved. I’ve joked around with Brian a few times that I’m going to stalk and track him down in CA to get an updated opinion from him on my health.

    • #31200
      Jen Cueva
      Keymaster

      Oh no, @colleensteele, I am sorry, I missed that part. I think stalking him could pay off. You know, some doctors want to do what they can to help their patients.

      With all of your unanswered questions and ongoing symptoms, it must be frustrating. If you send me his information, I can help. I mean, just saying, I am saying “a friend” can stalk when it comes to our health concerns.

      I bet if it were your family member, you would stalk them. So, you deserve answers, too. Am I correct?

      Please know that I am here if you need help and keep you in my prayers.

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