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Lost… anyone experience this?

Seeking Advice / Experiences

Hey everyone, I am looking for some advice or experiences of others. I need a community who understands.

Long story short, I am a 27 year old male. Never had an issue with bowl movements or any stomach pain until my senior year of high school (2015). I then developed a constant urge to use the restroom and loose stools.

Fast forward to now, my doctor for a long time told me it was anxiety. I got tired of that answer and found a new doctor. She did a pretty comprehensive stool test. The biggest concerns were the following

Lactoferrin 14.3 (should be 7.3)
Lysozyme 1350 (should be under 500)
Secretory IGA 351 (should be 275 max)

According to the test, I have major inflammation.

I feel like my life has been turned upside down. Feel like I can’t travel, and I am anxious about where the restrooms are.

Constant urge to use the bathroom. Nervousness makes it worse. I do have eczema, but recently developed white patches of hairs on my head and white patches of skin due to inflammation and scaring. Fatigued most of the days….

I have a consolation next week for a endoscopy and colonoscopy. My grandma had autoimmune issues and either had Crohn’s or UC.

Anyone else have these symptoms?…. I really hope I can get answers…. I’m tired of not having control of my life.

  1. Hi . There are definitely people here who with similar experiences who understand. Hopefully others will chime in with their experiences, but I want to share with you this article from our editorial team on symptoms: https://inflammatoryboweldisease.net/symptoms. It is great that you are going for a consult and there is a plan for testing. Are you seeing a gastroenterologist? Also, I want to note that even within the specialty of gastroenterology there are IBD specialists (it may be worthwhile to ask about the experience level of a gastroenterologist with IBD). This article gives an overview of the diagnostic process: https://inflammatoryboweldisease.net/diagnosis. Hope this information is helpful and please feel free, if you like, to keep us posted on how things are going and to ask additional questions - this community is here for you. Best, Richard (Team Member)

    1. Hi SSG_Leader,
      There are many in this community that have had similar experiences that you are having now. Mine is not much different than yours. When I was in my senior year in HS I had an emergency appendectomy which in and of itself is not remarkable. But in my 1st year of college I began to have severe symptoms that was the beginning of. My journey with Crohn’s Disease. In my 2nd semester of my 2nd year in college I had to be taken to the ER and had to undergo emergency surgery. That’s when it was confirmed that I had Crohn’s. It took a year & a half to get well enough to go back to college. Since that time I’ve had a rather intense experience with this illness
      It’s good that you are getting medical care now. As Richard said, make sure you have a gastroenterologist that has a lot of experience in Crohn’s/UC. The advantage that you have over me is that there are so many new treatments and biological medicines that can hopefully keep you from having my experience. I was 19 years old when I had that emergency surgery. Since that time I’ve had to undergo 7 more bowel resections and multiple other surgeries. I’m not telling you these things to frighten you or to take any hope away from you. I say these things to encourage you to pay attention to your body and trust your God-given instincts concerning you care and relationships with the medical community. Finding and being treated by a competent GI doctor is very important. Staying in contact with this online community is also important. The I D online community has a wealth of resources and information that can help keep you in a positive frame of mind. Remember, you are NOT alone with what you’re experiencing. Find and get people who will support you and stay with you if/when things get really tough for you. You cannot do this by yourself. Believe me when I say that through this you will truly find out who your real friends are. Even some of your family may not understand what you’re going through. Fortunately for me I’ve had a wonderfully supportive and caring wife who has stayed with me through everything that I’ve had to endure. I’m now 70 years old and am in a good place physically. I’ve had a good and productive life. My wife and I have been married for 49 years and have two wonderful children and 6 awesome grandkids. I’m a blessed man. One last thing I would say is take care of your emotional and spiritual life. Take my word for it, you will need those parts of you personhood. God bless you and I wish you well. If it’s not too personal, let me say that I will be praying for you.

      1. This is so beautifully said. -Elizabeth (team member)

    2. Checking in to see how your endoscopy and colonoscopy went. That was how I was diagnosed with Crohn's. I'm hoping you got some answers. Sending strength your way, Elizabeth (team member)

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