Is this how it's done?

By brd8649

1 min read

I'm in a bit of a rage at the moment. I've been suffering with pain in my gut, anus, sides. Extreme arthritis with surgeries, throwing up 3 hours a day and the list goes on. I had a colonoscopy 3 years ago and the GI said to me after, "well you have IBD. It's basically intestinal inflammation, that's it." and that was the last time I've heard from his practice. Today I'm reading that IBD is a broad term for Crohn's and ulcerative colitis, which are autoimmune diseases. He didn't tell me this nor tell me there needs to be tests to determine which one I have so medicine can be given.

Can someone please tell me that I was screwed over here or am I taking crazy pills? Death at one point seemed a better alternative than what I am going through.

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erin.tirney Community Admin
<inline-mention user-id="2230867" username="brd8649"/> wow I am so sorry to hear you have had such a horrible experience with your GI. You are definitely not taking crazy pills and I can understand your frustration. Have you thought about trying to find another GI for a second opinion and to get proper testing? I know many in our community have expressed it being helpful getting a second opinion. You are right that there is not one single test done in order to diagnosis CD or UC and following up with other diagnostic tests would be appropriate. I am attaching here the tests that normally are done <a href='https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures' target='_blank'>https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/</a> I hope you can get answers soon and the relief you deserve. Please feel free to reach out if there is anything we can help you with. Warmly, Erin (IBD team member)
Amanda Osowski Moderator & Contributor
<inline-mention user-id="2230867" username="brd8649"/> , I'm so sorry this was your experience! I wish your story were much different. You're definitely not crazy! A diagnosis of IBD, with continued symptoms, usually comes with testing, medication, additional appointments, etc! I highly recommend getting a second opinion. Please, let us know if we can support you! Warmly, Amanda (Team Member)
Julie Marie Palumbo Moderator & Contributor
You are definitely not crazy <inline-mention user-id="2230867" username="brd8649"/> and thank you so much for sharing your story so that you can get validation that you need to seek advice from another GI in order to get the treatment you deserve. Unfortunately, it is common for symptoms to go un- or misdiagnosed for IBD patients, so if I were you I would not stop seeing specialists until I had a definitive answer as to what is going on and how it can be treated. You do not deserve to suffer like this. I hope today is a better day for you and please keep us updated on your journey! --Julie (Team Member)
thedancingcrohnie Moderator & Contributor
<inline-mention user-id="2230867" username="brd8649"/> , Oh my. Reading this my heart goes out to you. No you aren't crazy in the slightest! Since posting this, have you been able to get a second opinion? Just checking in to see how you have been doing. Sending strength your way, Elizabeth (team member)
Matt Nagin Moderator
I'm sorry to learn about what you are going through and, yes, believe, you were not given adequate information. Unfortunately, with these conditions, you have to be proactive. Sadly, doctors often do not get, fully, what we are going through. I have had Crohn's disease for thirty years and it took a long time till I had a definitive diagnosis. It eventually took a surgery, for what they thought was an appendecitis, to get my diagnosis. I would suggest doing the additional testing to find out what exactly you have and getting on medicines. The drugs really can make a difference. Your symptoms sound like mine when I first developed Crohn's disease, around age 10. Not saying I'm perfect now. That's not the case. But I am in remission and that is in part, I think, owing to the medicines. The medicines can also keep you out of surgery, which often just makes Crohn's or Colitis problems that much worse. So, in sum, what you are going through is terrible, I get the frustration and rage. But try to go get a definitive diagnosis and some sort of drug treatment so you can feel better and hopefully get some sort of normalcy back.