Not diagnosed yet, any thoughts?

Hi - I'm new here. I've not been diagnosed but all my research leads me to Crohn's based on my symptoms. I've always had a tendency toward diarrhea, or loose bowels - with frequency 3-7 times per day usually. This has been my normal all my life without any real pain, so I never sought treatment. About 6 months ago, I started having more severe episodes of diarrhea fairly often. Severe cramping, urgency to go, on the toilet for 20-30 minutes with the spasms (feel like I'm not done). Then I'm okay until the next episode. A couple months later, I start having stabbing pain in my upper left abdomen. Intermittent and varying in intesity. Went to the ER twice in 2 weeks. Did bloodwork, a CT scan both times (2nd time I had to drink a liquid for contrast). Everything was fine. My doctor thought it may be an ulcer (I have GERD - on Previcid). Gave me Carafate, but that didn't help, put me on Levsin (IBS med) 3x per day for the diarrhea, which has helped reduce the frequency and urgency of the "episodes" but still have issues. And if I forget a dose, I the symptoms get worse again fast.

A couple years ago, I had a high RH factor and they thought I had RA. My symptoms were fatigue, joint pain (mostly my hands and hips). Saw a rheumatologist for a year, but all my tests came back fine, so I was never officially diagnosed. But the dr. said that my body was showing the symptoms of an auto immune disease, but nothing had settled yet. That I may have other or more symptoms down the road that would lead to a diagnosis. I stopped seeing her since it was expensive and what is the point? My joint pain gradually got better, but I was diagnosed with Fibromyagia at the same time. I have flares of muscular pain with that.

One other side note that my be related - I've had bouts of mouth ulcers since I was a teanager. I get them all over my mouth and usually multiple at the same time. A few times I had them covering the entire roof of my mouth and down my throat. That is the most painful thing! Just drinking water feels like I'm swallowing battery acid. Doctors have never been able to figure it out. My current doctor said it is a virus that I carry and flares up when my resistence is low.

I go back to my doctor this week and I will be making sure I get an endoscopy/colonoscopy. Has anyone here had a similar experience? Does this sound like Crohn's? I'm really worried about the pain I"m having and I"m scared of the diagnosis.

Thanks for reading my long post

Welcome to the forum. So sorry to hear of all you are going through. Are you seeing a GI? If not, a referral to a GI would probably be the first step.

Keeping a symptom log can be helpful as it can give the GI an idea of the severity and frequency of your symptoms, A fecal calprotectin stool test, colonoscopy/endoscopy are all good tests to ask for. Although the fecal calprotectin is not invasive it can only determine if there is inflammation in your bowels to warrant more testing.

Also a food journal may give you some idea if your issues are occurring with certain foods.

In the beginning, my son had mouth ulcers with his flares. He hasn't had them with more recent flares but I do remember how painful they were for him so sorry you are having to deal with those.

He was also px'ed Levsin but it didn't seem to help with his pain or spasms at all. I do hope that you can find some answers and relief soon.