Colitis

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Hello!

Hi, my name is Stephanie. I'm here because I was recently diagnosed with colitis after a difficult 18 months of trying to find answers. Hoping to connect and learn more on my new journey!

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I'm new here!

Hi, my name is Stephanie. I'm here because I was recently diagnosed with colitis after a difficult 18 months of trying to find answers. Hoping to connect and learn more on my new journey.

#MightyTogether #Colitis

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Invitation to participate in IFS therapy ADHD study and help a fellow mighty member

Hello,

I'm writing my final research paper for my final class for my masters in psychology program and I need participants for my study. I have been having migraine, colitis, and fibro flare ups so I was not able to stay on schedule and now I am in a time crunch to find enough participants. If you could please share or let me know if you are interested, I would greatly appreciate it! Let me know if you have any questions.

Thank you!

Here is the blurb on the study you can pass along:

Hello,

I'm a MA psychology student researching the impact of Internal Family Systems (IFS) Therapy on executive function in adults with ADHD, and I'm looking for 100 individuals over 18 with an ADHD (diagnosed or self-diagnosed) to join my study. The study is five days long (3/3-3/8) and involves several assessments and IFS exercises that will be shared virtually and can be done from home. Additionally, I'm looking for 1-2 volunteers to interview at the end of the week. My goal with this study is to improve the treatments available for adults with ADHD. If you're interested in participating, please feel free to reach out to me for more details: Evar.restad@my.calsouthern.edu

Thank you

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I'm new here and looking for new friends my AGE (Male 24) please be 18-29

Looking for new friends IBS, Crohns and Ulcerrative Colitis! i have IBS and EOE and have wonderful friends with crohns and UC. Add my snap tyalbob60 if interested

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5 years undiagnosed - 1 year diagnosed - Now living a somewhat normal life

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 claudio.heintze@gmail.com, and let's make a difference together.

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Acceptance

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

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Looking for suggestions on where to go next

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!!!!

#Undiagnosed #AutoimmuneDisease #Fibromyalgia #CrohnsDisease #RheumatoidArthritis #InflammatoryBowelDiseaseIBD

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