Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

New here - Not diagnose yet. Very sick.

My first time here and coincidentally New Year's Eve. I am both relieved to find this group and so anxious. I am one desperate person. Hardly know where to begin. I'm overcome with emotion finding this safe place bcuz I have had not a single soul to talk to about my situation. For now, I am just feeling washed with relief and hope to get answers soon bcuz I've been so sick for so long. Here is just a bit on my health issues for now:
~~ developed iron deficiency anemia almost 5 yrs ago. It's categorized as severe by now. First 2 yrs, doctors were looking for source of bleeding, and last 2 yrs they have all settled into mentality that my body doesn't absorb iron anymore. My Ferritin goes very low more frequently past 2 yrs. Averaging an iron infusion every 2-3 months now.
~~ I've had severe diarrhea for last 5 months with NO break. My life aniliated and restricted to home. First 2 months or more, 15-20+ episodes per day. But never less than 10. Also didn't stop even when I had no food for 24 or more hours.
~~ Lost appetite completely starting before diarrhea began, and also had episodes of vomiting. Vomit was usually connected to putting one bite of something in mouth with instant powerful vomit after one bite. My go-to food like tuna salad was the worst; yet I had been eating it everyday for previous year. Suddenly, my fave breakfast of scrambled eggs with heavy cheddar cheese had same reaction. I was 100% confused and couldn't find anything that I could keep down. Yes, I was losing weight.
~~ Once diarrhea started, my body packed on 20 lbs in a matter of weeks and I looked 9 months pregnant quite rapidly. But I was only consuming maybe 500 calories day. Plus, all that diarrhea.
~~ Had to quit working, and even struggled to walk my pup.
~~ Severe fatigue. In bed all the time. Inability to conduct activities of daily living.
~~ Body wide skin rash that both painful and itching, and ulcerative or opposite like eczema.
~~ I already had diagnosis of osteoporosis, but beginning 2022, it felt like warp speed joint destruction. Developed significant pain and weakness in both shoulders but mostly the right side. By June, my right shoulder started drooping completely (like a downhill ski slope). It has been like this ever since. Also, both ankles seemed to be deformity and changing shape before my eyes, and pain so bad that walking was super difficult. Both parts of my body impacted had no prior signs whatsoever until this year.
~~ I have abandoned every doctor (except hemotologist) and starting fresh.
~~ I've had gastro issues for 5 yrs or so, but nothing that lasted long enough to major alter life.

As of today, the diarrhea seems under control past 2 weeks, but it was replaced by constipation that sent me to ER.

~~ What I can eat is very limited. I don't want to eat. Zero desire. Mostly restricted to mashed potatoes, boiled eggs, small amount of skinless chicken breast or turkey, potato soup, or a simple bread. No grains, nuts, or veggies, only fruit is banana foe now.

I'm so glad to find you. I'm also weary and discouraged. Have become quite emotional lately but I think mostly bcuz I haven't been diagnosed or treated. Ugh.

  1. First of all, I'm sorry you are having to deal with all of this, but you are definitely in the right place. We have all experienced either all or some of everything you are going through. Many of the things you are going through I have been through many times. At my worse, I was going up to 20 times a day, severe pain, didn't eat, in and out of the hospital, and I lost more than 60 pounds.
    I have been dealing with Crohn's for 35 years now and I can honestly say, you will get through this and while you might feel all alone, you are not. We are all here for you.
    Have you had any luck finding a GI to help, or if you have been in hospital, have they done any testing? MRI, ultrasound, blood work, fecal calprotectin?
    One thing I can say is that, while you are discouraged and emotional (very common among us), remember to advocate for yourself. If you are not happy with doctors or the lack of testing etc, insist on behalf of yourself.
    Let us know how you get on.
    Vern - IBD Team Member

    1. Hello Vern. Thank you for the kind words. Will try to be to the point, but my journey has been anything but direct route.
      ~~ The iron anemia was the first sign of this mystery. Came out of nowhere in spring 2018. Never been anemic. In my mid 60's and had never been in hospital before. Never had a broken bone, or any dx disease. My Ferritin was 5. Yikes.
      ~~ Had first Colonosopy summer 2018. It was normal. No evidence of internal bleeding or in bowel. No other testing was done. Bloodwork was fine. And I didn't have BM issues of note. TREATMENT: Iron infusion (body won't tolerate oral iron).
      ~~ Exactly one year later, my Ferritin dipped again and horrible symptoms bcuz of it. Another Colonosopy, which was normal again. No red flags in other testing. Colonosopy normal again. Treatment same as year before.
      ~~ In 2020, my health took nosedive. Developed gastro issues, but many other symptoms that overshadowed gastro. Suddenly, I had POTS and kept falling from fainting. 8 falls in 2020 and 3 were bad enough to cause concussions, broken ribs, etc. Yes, I had on & off gastro but nothing on regular basis. My iron anemia was out of control. Needed 4 iron infusions that year. Another Colonosopy and my first Endoscopy. Only abnormality was a moderate hiatal hernia. Still no evidence of bleeding. The last fall caused TBI and a severe concussion for 7 months (until May 2021). 2020 also began showing red flags in bloodwork but no autoimmune evidence. Another horrible condition in 2020 was bodywide ulcerative rash. It was all year and torment. NO doctors had a clue!! And I was positive for chronic fatigue syndrome. My first of 3 very rough years.
      ~~ I had no way of knowing if the gastroenterologist was competent, since I never been sick. By 2021, I was realizing that none of my doctors were doing proper due diligence. I began documenting and researching. But I couldn't get these doctors to pay attention.
      ~~ Adding fuel to fire, in spring 2021, I was diagnosed with an ovarian "adenaxal mass" the size of a lime. I was totally alone dealing with several medical conditions and couldn't catch a break. The hysterectomy had to wait bcuz hospitals wouldn't do "elective" surgery. Terrifying as the surgery didn't occur until Dec 2021. Had a robotic assisted hysterectomy and, very thankful the mass was benign.
      So, you see, not a clear path regarding my gastro struggles.
      ~~ No, I'm not making any of this up, but I also had severe Covid in July 2021, causing 9 blood clots and a pulmonary embolism in each lung (while I still had the ovarian mass). Ended up in ICU bcuz of 2 lung embolism. be continued. I'm sorry for the long description but I don't know how to skip these parts. My gastro nightmare didn’t commence full speed until Sept 2021, and obviously still going and declining.

      Thank you so much for caring and asking questions. I am starting new. No gastroenterology doctor yet. More to follow. My heart is lighter and I feel hope on this New Year's Day.

      1. That is a lot to go through, sorry. I have had severe anemia since 1988 when my symptoms started but I have been lucky with great doctors (though took 6 months to diagnose). I was always healthy and a competitive athlete and had no history in my family. I can feel your pain, sorry. Hopefully, someone here can help you more.

    2. I am so happy just to chat here with others who understand. Not really feeling need for "help" in literal way...more like kindred spirit understanding. I'm a newbie, and that is why feeling part of this group means everything. I'm feeling upbeat...getting a break from the bathroom for 2 wks now is fantastic, so off to a good start. Thank you!

      1. It's a great feeling not having to spend your life in the bathroom 😀 We all understand and even though we suffer from the same illness, we also have different experiences. Welcome
        Vern - IBD Team Member

    Please read our rules before posting.