Lost for words

First of all I hope everyone here had an awsome Christmas. As for my family Christmas was postponed til next weekend cas of flu and or covid.
Today I had a colonoscopy and endoscopy. And of course everything appears that I'm in remission. However the whole reason for doing the scopes is due to abdominal pain 15 mins after eating, passing blood, more frequent bathroom trips. I didn't even have to take all of the miralax/gatorade to be cleared out. I've also lost 15 pounds in the last 4 to 6 weeks. Have others had flare symptoms but normal scopes? It's so frustrating. I had the endoscopy done due to whenever I eat it triggers a cough like sometimes I almost throw up. Even during the scope they said I coughed a lot. I guess next text will be a swallow study.

I wish you all a Happy New Year

I was going to ask when the last time was they tested you for things like c. diff., giardia, etc.

Also, have you had any scans? Considered a pill cam? So often scopes miss a ton since there's dozens of feet of intestine they can't get to.

Bucko,
Sorry you are going thru this.

When I first came down with Crohn's I was going to the bathroom 15 times a day, lots of blood, nausea, difficulty swallowing and pain after eating. I lost 60 pounds. Eighteen month period of scopes every 6 months and blood work once a month and everything looked normal....until suddenly my colon was completely ulcerated where I had complained of the pain and issues. Now we know that it's a pattern for me. When I "flare" my colon and labwork take a very long time to show that I am flaring. It's frustrating and concerning.

Hang in there and keep searching for answers.

Clo

Well the polyps came back as normal benign polyps. I'm suppose to submit stool sample for cultures. It has to be turned in within 2 hours of collection but since I don't have a car and the place is 30 miles away that's been hard to do. My blood work seems ok for the most part. No matter what I do my iron vit D b6 b12 and potassium seem to run low.

Bucko,

That's what they told me on my last fecal test. After I spoke to a supervisor, they advised me I could refrigerate and bring it in within 4 to 6 hours. (I think) Can you call the lab and speak to a supervisor and ask her? There might be an alternative test available.

On the symptoms before I was finally diagnosed. I had food poisoning, started going to the bathroom 15 times a day, and then developed issues with psoriasis, Uveitis, sunlight and heat intolerance. I was only diagnosed when a fistula broke thru and that time the scope came back as very slightly irritated. The 6 months after that I was in the hospital for sepsis 3 times. So it's important to follow up and try to find those answers. 3rd sepsis visit I went to a new GI and although he could not see any changes in the scope and my blood work showed only slightly raised levels..... He sent me to Dallas Baylor University Hospital. There a specialist did yet another scope a week later and my colon was so ulcerated they didn't think they could save my colon.

So Bucko, if you are struggling, your body is trying to tell you that something is not right. Keep searching for those answers and do not feel bad about being an advocate for yourself. I hope you feel better soon.

Clo