It started with feeling like shit when I was drinking alcohol with 18, then translating into having to fart more often than normal to 24/7 farting. In the end, I started having some attacks where I had to run to the bathroom and couldn’t even walk one step and trust me I am quite resilient to pain. Over 5 years I went to 15 different doctors. The diagnosis was always the same - It’s my psyche causing the pain - that was hard to swallow as I was doing my best not to be stressed and thought to have a good mental state. After 5 years it was at a point where I couldn’t hold it anymore. My parents were very supportive and forced me to see the doctor again. There, the first time a parameter was somewhat off and we did a colonoscopy, and guess what… I had an infection - The diagnosis: Crohn’s disease
Then I started getting meds against the infection. While taking them I didn’t feel any relief from the pain so I started taking matters into my own hands and researching what I could do as I now knew what I had. I started not eating any wheat anymore, went vegan (with some exceptions) & did even more sport than before. After 3 months I had no infection anymore. Now I am living a somewhat normal life. I still have a basic feeling of discomfort in my stomach, but that is just fine for me now. I also got to know others that had similar problems and they went to a psychologist to address some problems from childhood which helped 50% in battling their problems. So I’m considering to do that and see if that helps. I am also starting to slowly reintroduce some food and listen to my gut to where I have to draw the line. I also know that this might not work for everyone with Crohn’s - I just wanted to share my story in hopes it could help the right person in need.
If you've made it this far, I'm grateful for your time. In those five undiagnosed years, I made a promise to myself: no one should endure what I went through. There might be someone who is just starting to have symptoms and I could save them 5 years of suffering if they knew my story, or I could learn from someone who is fully in control of their disease and has had similar symptoms.
That’s why I'm gathering stories from thousands who are facing or have faced Crohn's and Colitis. Using AI, I aim to distill insights that save you time, ease your tears, and help your individual recovery. Your unique story is a vital part of this collective wisdom. Reach out to me at firstname.lastname@example.org, and let's make a difference together.
Funny Discourse of my first 3 years being undiagnosed:
Me: "My stomach hurts"
Doctor: "You're lying"
-- Silence --
Doctor: "Anyway here is your 60k bill"
Navigating the Maze of Diagnosis: Sharing My Journey and Eager to Hear Yours! Crohn's & Colitis Story Waitlist
Acceptance doesn’t come easily, but it is a relief when it does. My fellow spoonies understand this! My Word Baths are a morning ritual when I invite a word to pop up and then see what definition arises. #InflammatoryBowelDiseaseIBD #Anxiety #ChronicIllness #AnalCancer #CrohnsDisease #Colitis #Cancers
Hi! I’m 27 years old and have been struggling medically from the time I was 5. At 7 I was diagnosed with Crohn’s, but since have been told “you don’t have any active colitis” or “we can see something wrong in your bloodwork but can’t identify it”. I have been to GI, hematology, ENT, derm (horrible skin rashes and HS diagnosis), asthma and allergy, nephrology, and nowwwww rheumatology. My rheumatologist has done work ups and landed on “fibromyalgia” and chronic systemic chrons disease. I have symptoms such as intense stomach pain from time to time, Reynolds, anemia, chronic inflammation, constant nausea, intense fatigue and in the past few years Ive developed severe joint pain at my shoulders neck and hips. I’ve started humira but I feel like it makes me worse and sick for 2-3 days, I feel great for 3-4 days, then have to do another injection. It sucks.
So….. I’m here to ask you, what else can I do? I’m looking into getting a genomic sequencing study done and traveling to the Mayo Clinic or John Hopkins for another opinion. Does anyone have any suggestions for genetic doctors (I live in the Boston area but willing to travel anywhere at this point)? And does anyone have any recommendations for who to go to first, immunology at a large institution like Mayo Clinic or genetics clinic? I’m overwhelmed. Any advice would help!!!!
Arthritis, tendonitis, chronic fatigue syndrome, colitis, burning mouth syndrome and other symptoms that haven't even been diagnosed yet. I have monthly infusions of medication to suppress my immune system from attacking my body but nothing is in remission.
I believe everyone of us has an important story.
Maybe people can learn from them or maybe we can learn from people because of them.
This is mine.
Help This Family Facing MS, CVID, and More - Patient Worthy