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Almost diagnosed! But here's my story

I'm 33, and I started getting really sick when I was fifteen. First, I would wake up in the middle of the night in tremendous pain in my stomach (now I know the spot was my small bowel) and all I could do to calm it down was eat. I specifically remember the feeling of a hole in my stomach calmed briefly by food. This is the main reason I don't present with weight loss as a main symptom. I was a kid, and scared, and didn't know what to do. My pediatrician said he thought I have Crohn's disease. My parents prevented me from getting diagnostic testing for other reasons, and it continued to get worse as I grew older.

In college, I would lie down on my dorm room floor and just scream. I would scream in the car as it would happen there, too. Just...terrible pain. Went to a doctor who diagnosed me with acid reflux, said that the omeprazole would take two weeks to work. This cycle repeated ad nauseum constantly. Incredible pain, diahrea, and more and more pain.

A few years ago, it started getting more serious. Blood started to be in the picture. I was ruled out for internal or external hemorrhoids. I don't really get taken seriously at the doctor, big surprise. I'm fat, and a lot of doctors think that only skinny people deal with IBD.

My first GI doctor (had to fight hard to get in the room with her) did a colonoscopy. Not clear. Microscopic colitis (although now they're saying it doesn't say that) and cell activity in my stomach. Apparently couldn't examine the rectum (although now they're saying they could.)

I started getting used to bleeding so much that I was dizzy afterward out of my butt a few times a week. Doctor started assuming IBS and treating that. Fiber pill treatment made me bleed a large amount during an episode. Dr shrugged her shoulders and said she could not help me anymore.

I had another episode but now it was just pure pain again. By now I'd had two or three episodes of not being able to fart or poop at all for 3 weeks and got laughed out of emergency rooms for those. This time it was just...pure brutal pain on the top left.

Got laughed out of an ER, and my pcp prescribed prednisone, which cured the pain miraculously. To her, this confirmed that my small bowel was the site inflamed, which explained the colonoscopy not finding it.

Covid happened, and so did another episode while I was on low dose pred. I saw a GI over the phone - two, actually. One listened to me until I said I hadn't lost an incredible amount of weight and then became obvious about the fact that she didn't take me seriously at all, and the other didn't take me seriously for most of the appointment until the end, when he said "wait wes - most of the activity is in your small bowel. It does look like small bowel crohn's."

He prescribed me a higher dose of pred, then his nurse called the pharmacy and told them to not prescribe it at all, and i fought enough to get the prednisone. I got pain relief for a bit, but then I got sepsis. I haven't really been the same since. I remember the night before I went to the hospital just pooping pure blood and not being able to stand up straight. I also got a huge, intense pain right above my butt (a common site of pain, but i was barely able to breathe through it).

I have a radiology confirmed mass that's growing on the entrance to my stomach and it's pretty painful. It's confirmed to have grown. In my local support group, someone pointed out that it could just be a fistula (not cancer).

So...looking at fistulas, I was surprised. I used to have a spot on the front of my abdomen that would pour water out if i ate too much sugar, and I didn't get why. I now have a spot that does that right above my butt (the site of the super bad pain the night i almost died) and just.....pours out a ton of fluid.

I haven't bled in a while but I had a super bad episode where I was throwing up daily and couldn't poop for 2 weeks a couple months ago. It finally subsided with tons of laxatives, but for a long time i was just throwing up.

It's frustrating that it's been 20 years and I've been so harshly dismissed. Still getting worse. Whenever I talk to doctors it's automatically assumed I'm exaggerating.

Anyway. I'm going to insist on the pill cam this time. I really want to see my small bowel. I'm also going to ask about a barium radiology exam to see what's going on with this mass. Or an MRI.
It's frustrating to never have gotten help. I have a feeling my pediatrician was right, and I also don't think a pediatrician would have given that opinion if he didn't strongly think it. It's so frustrating I was kept from diagnostics back then.

I read another post on here by someone who had clear colonoscopies for 20 years before being diagnosed by pill-cam. That's really encouraging and makes me feel a lot less alone. I know I'm not crazy. I see the blood. I feel the fluid. I can feel the mass whenever I touch my stomach. So i's it's not "just IBS" or something. IBS wouldn't cause a mass to grow on your stomach, and it wouldn't cause fistulas.

Anyway. Hoping to get diagnosed, as the pain and fatigue are really terrible.

  1. Wow, @wesmoran what a story. To say this sounds frustrating is such an understatement! I hate how you've been dismissed for so long, laughed at, even. It's so horrible that you and others have to endure this sort of ridicule and I'm just so sorry for all you've been through. (Unfortunately) there's so many here who understand and I'm glad you've found our community and hope you find some peace here knowing you AREN'T ALONE. You know your body better than anyone else and I'm glad you keep fighting and I hope you never stop until you get the answers you deserve! Will you keep us updated on how you're doing and let us know how the pill cam goes? We're here for you and thinking of you. Sending all the positive vibes your way - Pam (team member)

    1. Oh @wesmoran! You have been through so much!!

      I hate that people get so easily dismissed because they arent underweight. Really hoping the pill cam shows something for you.

      Did you never see a GP about the spot on your stomach that fluid used to come out of when it happened?

      Definitely keep pushing! Best of luck!

      - Sahara (team member)

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