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HELP! Has anyone had a similar experience?

Hello! I hope you are well. I need help because I’m desperate. I’m new in this forum and I want to tell you what is happening to me. In summary, my digestive problems started 5 years ago. I was diagnosed with IBS and lactose intolerance after some medical checks. When the symptoms continued, they told me it was stress and that I had to go to therapy.

Since April of 2018, I started with diarrhea, mucus, bleeding, fever, and abdominal pain that lasted 3 weeks. On suspicion of UC, I was given Pentasa. After 10 days of taking it, I had a colonoscopy that showed aphthae but biopsy gave non-specific colitis.

Without a specific diagnosis, after 2 months, doctors took away Pentasa. Three months later, I returned with the same symptoms with elevated fecal calprotectin (300). Doctors gave me 4gr daily of Pentasa again, but it never finished helping my symptoms. Until a month ago, I was admitted to hospital for an acute abdomen with a stenosis in the large intestine diagnosed by CT.

After several checks during the medical stay, they ruled out UC infections, among other things, and told me it was Crohn´s. But after 3 days of stopping oral ingestion and being in parenteral nutrition, I had a colonoscopy that showed the same as last year, but the stenosis disappeared without medication. After this, I did the pill cam that showed erosions but not conclusive of Crohn´s.

The doctors know that something is wrong with me but they aren’t sure what. They tell me that I´m a complex case and still can´t confirm IBD. I´m in a lot of pain every day. My question is, did someone have a similar history and the disease started like this? Do I have to wait for the disease to get worse?

Thank you!!
I will appreciate any help or opinion!!

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  • Julie Marie Palumbo moderator
    10 months ago

    I agree with Elizabeth and think you should get a second opinion for sure. I am so sorry you are struggling, and you shouldn’t have to be in such pain before getting a proper diagnosis.

    Sometimes, doctors overlook information and it takes a fresh set of eyes to see what was missed so I would schedule an appointment with a new GI ASAP, take your records with you, and even be open to new tests to be sure nothing was missed the first time 🙂

    Please keep us posted on your progress!

    –Julie (Team Member)

  • thedancingcrohnie moderator
    10 months ago

    I am so sorry that you are going through this. It can be so frustrating feeling ill and knowing something is wrong with your body and not being able to get straight answers.

    As for me, I did not have a similar experience and I wish I did so I can offer more support. My symptoms interestingly practically turned severe over night and I was diagnosed rather quickly.

    However, I would highly suggest getting a second opinion. Go see a different gastroenterologist immediately. The fact that you have had mucous, blood, fever, pain and diarrhea all point to IBD. Again, I am not a medical professional and just speaking from personal experience. Those are all symptoms I deal with when I am flaring.

    Get a second opinion. And push for tests. Perhaps suggest that you may have microscopic colitis? Here is a link explaining more on what it is.

    Also, your point is correct. Why should your symptoms have to reach the point of being severe to get a diagnosis? I definitely think it should never have to come to that point. So keep pushing for tests. Keep pushing for answers. In this case, unfortunately you have to be your own advocate. I’ll be rooting for you.

    How is your diet? Are you taking any supplements to help with healing?

    Message me whenever.

    Always dancing,
    Elizabeth (team member)

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