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I'm left with no answers from hospital

I have been having problems with my bowels for years on and off. It's always been out down to IBS in the past but it got a lot worse recently.

In the last year I have lost a lot of weight (15kg) and had constant changes in my bowels. Loose to watery stools 3-4 times daily, occasionally more when it's bad.

I get lots of cramps but also sharp pains throughout my tummy but worse on the right side. No blood in my stool though.

My GP did a calprotectin which came back high so I was referred for colonoscopy which I had last week.

They didn't explain the findings at all. On the report it states that there were dilated vascular appearance throughout and "mild ileitis with tiny aphthous ulcers" in the terminal ileum. I heard the endoscopist mention Crohn's, but not directly to me.

They took biopsies throughout the bowel and have just said to call my GP in 2weeks to find out the results.

I just want to know where I stand. If it's Crohn's I want to know.

Anyone have any idea?

  1. Hi @nicky88,

    I completely understand your concern. It is never comfortable to be in that limbo area of waiting to hear back from a doctor. You just want to know as soon as possible what is going on in your body. I know the feeling entirely.

    From the info you have given, it looks like your doctor is waiting for the results of your biopsies before he comes to a conclusion. Of course, I am no doctor but if Calprotectin is high, it is a sign of high inflammation in the body which can point to IBD. However, there are so many other factors involved for a diagnosis to occur.

    I'm sure your doctor will give you more info on your colonoscopy findings when you call in two weeks. If not, on that phone call ask for the complete report of your colonoscopy and an explanation etc. Definitely advocate for yourself to get all the information.

    In the meantime, while you wait for your results here is some info on diagnostic testing for IBD. If you feel like you may have IBD, you can ask your doctor to perform more tests so that you can completely rule out IBD being a possibility.

    For example, a colonoscopy only involves the large intestine and tiny portion into the small intestine. It is possible to have Crohn's in the small intestine. Therefore a pill cam test is used to investigate the small intestine.

    Here is a link with the info on testing for IBD that will shed more light on how a diagnosis is found: https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/

    I hope this helps some. Reach out if you have any questions. We are here for you.

    Hugs,
    Elizabeth (team member)

    1. I've suffered with what I believe is IBD for over ten years. I've had NUMEROUS colonoscopies & about 5 endoscopies. In each & every one, Inflammation was present, throughout my digestive system. In my last colonoscopy (20 months ago), TEN ulcers (apthae) were found in my large bowel.

      The PURPOSE of the tests was to diagnose my increasingly severe symptoms. But every time, I got the "Shuck 'N Jive". ("Yes, 10 ulcers...but they're not that big"). WTH??? NO followup whatsoever. It seemed they'd just check for Cancer, and not finding any, they'd say: "You' fine...you're fine". I feel (felt) Abused. NO I am NOT "fine" I am now in almost constant pain...the sickness...the pressure...I always feel like I have to "Go" I am chained at home, to the toilet. I cannot travel. I cannot even go to the grocery store, for fear of an attack of diarrhea, which I cannot hold for even a New York minute. It feels like my intestines contract (spasm) by themselves, FORCING me to Go.

      They all tell me that UC/Crohn's/IBD are all very hard to diagnose. I get it. But why has no one even offered to try me on (whatever) They all refuse me, when I say: "Treat me. Try something".

      WHY do they do this? TEN YEARS???

      I am frustrated beyond measure. I've suffered more than enough. Anyone got The Magic Words, that I might use? I'm not living a Life anymore. This must stop. I know how to Advocate for myself, but the stubborn resistance I've met seems to be Universal, among all doctors. I've seen accounts from others (here & elsewhere) who all tell years-long stories of Travail, over their diagnosis. WHY BOTHER with a diagnosis, after years & years of suffering?

      This next visit (3 weeks), either I walk out the door with a TREATMENT plan (RX) or I'm going on the Street for it. What works best? Stelara? Xeljanz? What, please?

      P.S.: I'm 68 years old. I don't have long to go. I would hate to be this way, on my deathbed. Yes I am bitter & angry...I know.

      1. I am so sorry you're having to go through this and feel this way @ArrEll!

        I can feel the frustration as I read! Have you had biopsies taken during these scopes? For me personally, they are always what has given the best idea of what is really going on. There are so many other tests that they can do, which you may want to push for: https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/

        Although, if they have already seen ulcers and don't seem that interested, I don't know how much use they will be! As I said, biopsies would always show the extent of my inflammation and disease activity for me.

        I honestly can't answer "What works best?" There's no one size fits all solution, and we often end up going through multiple treatment options before finding one that helps our symptoms. That's why so many are available. There are also different treatments depending on whether you have Crohn's disease OR ulcerative colitis.

        Good luck in 3 weeks!

        - Sahara (team member)

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