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For the newly diagnosed

Being diagnosed with any condition can be challenging. Being diagnosed with a chronic digestive disease might feel impossible at first, but the good news is that it’s not impossible and you aren’t alone! We hope you find some comfort here. Feel free to ask questions, vent, and connect with others going through similar situations. We're here for you!

  1. @Pam.Kingsland - Love this idea for a thread!

    - Sahara (team member)

    1. Hello! I just registered and have been recently diagnosed with lymphocytic colitis and also a colon lymphoma. And here I thought just living with Lyme Disease was difficult! 🤪 I’m thankful though that the cancer is a slow growing type of cancer. I see the oncologist today for the first time. My biggest challenges right now are lack of appetite, what foods to eat that won’t cause problems to my digestive system and fatigue.

      I’m truly looking forward to the support your forum offers here!

      1. I have not been diagnosed yet. I’m waiting on biopsy results to come back which has me stressed. So, I’ve come here to search for some possible answers and comfort.

        I feel like there’s something blocking my stool... like I’m so inflamed that nothing can come out. I feel like I have to go to the bathroom and my stomach feels likes it’s “bubbling”, but I can’t go. This makes my stomach cramp and I have some sharp pains in my lower abdomen sometimes when I get like this (mainly on my left side). I even get a sharp pain in my left butt cheek. When I am able to get something out, it’s liquid-like. When I wipe (whether I can pass stool or not) there’s bright red blood on the tissue. And , whether I pass stool or not, I get extreme pain in my rectal and anus area. I also get pain in my lower back. The pain lasts for hours. I do not have an anal fissure, according to my doctor after the colonoscopy. But I do have a lot of inflammation throughout my entire colon. I also have ulcers and/or nodules in my rectal area. Usually when I cannot pass stool, mucus-like stuff comes out (including blood). I am fatigue most of the time and my whole body feels weak. When I’m trying to pass stool (usually straining ... I know I shouldnt), but cannot.. I feel like I’m about to throw up. It feels like everything is pushing upward and like there’s a knot in my throat. But, I never actually throw up. I feel like this happens due to a lot of irritation and inflammation in my bowels during that time. Sometimes when I eat something (doesn’t really matter what) it goes right through me and I have diarrhea. I get bloating too from not being able to release my bowels due to the inflammation or blockage.

        I’ve had problems involving the pain for about 2 years. However, the past 2 months have been horribly worse. For the first time during my journey, I was prescribed pain medication which has helped! But it has now allowed me to notice other symptoms I didn’t recognize before because I would be in so much pain. I’ve noticed the abdominal cramping more and what I would call the feeling of an upset stomach. I’ve also noticed a sick-ish feeling more. Hoping I get answers from my doctor soon! If anyone has similar symptoms and could tell me their journey, I would appreciate hearing about it. Thanks in advance.

        1. Oh my! I feel like you just wrote out my experience right before I got diagnosed with UC. I had almost the exact same symptoms. Not being able to pass stool, but still feeling the need to, rectal bleeding, nausea, terrible weakness and abdominal pain, I did end up throwing up. Once the doctor performed a colonoscopy, she knew right away that it was UC and was able to prescribe the right medication. Gratefully, mine has been rather mild. I dearly hope that UC isnt what you have, but just know you are not alone!
          Hoping the best for you!
          Beth

        2. I was the same as you. I ended up treating my stomach pain with raw hot water bottles it was that bad in the final 4 years. I was bugging my gp every week. I ended up chasing my own diagnosis. Had emergency op. Got there in the end. You must bug the hell out of medical team/gp if you want progress

      2. ,

        The symptoms you are experiencing, many in the community have expressed feeling as well. I'm so sorry you are going through this. Since I'm a bit late to this thread, I am wondering what the results of your biopsies were. Hopefully you have gotten some answers and some relief from the awful pain.

        I hope things have gotten better. Sending warm hugs your way.

        -Elizabeth (team member)

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