Regardless of mucus, horrible b.m.'s and pain, colonoscopy came back fine, what is next step?

[jaj207]

I have had stomach trouble all of my life. Had the right side cramping when I was 19 and had a colonoscopy which came back okay.
In the 12 years since, I have had C Diff, Constant and unpredictable diarrhea, an anal fissure, etc. My Dr told me it was IBS about 5 years ago.


In the summer, I don't have too much trouble with food. But in the winter I get way more symptoms. Diarrhea, eczema, anal fissure gets worse, dandruff, nail fungus.


This past New Years I developed a pain in my lower rectum, and basically lost control of holding in my gas. A couple days later I had horrible stomach cramps in my mid right abdomen (same from when I was 19 which has only reoccurred half a dozen times in 13 years and never with diarrhea). The pain and symptoms have only gotten worse, and I have restricted myself to easy to digest foods.



My insurance didn't kick in until March, so as I waited my symptoms have become worse, I lost 20lbs in February, and mucus and occasional blood, constipation, pain eating anything, and joint pain all started to add into the picture.



I was lucky that my Dr took me seriously and got me into a Colon Surgeon Specialist and into a colonoscopy today to check for colon cancer or what we all expected.. CD. After all that prep, money, and living on the toilet for 16 hours straight, the results came back that there was no sign of anything. Honestly this seems like it should be good news, but I am sitting here in pain after having a bowl of rice, with mucus every time I go to the bathroom, even to urinate.

How did they not see that there is an abundance of mucus?
Has this happened to anyone else, and if so, what is usually the next step?

I am scared they will brush it off and I will have to argue with them for more tests. I have given blood, urine, a colonoscopy, but I have yet to submit a stool sample, which I thought was odd.

Thank you for your help!

 

[ronroush7]

Welcome. I am sorry for all that you have been through. Keep pushing until you get answers. Everyone here supports you.

 

[DanaBanana]

I'm sorry! It's a frustrating process no doubt. Keep pushing. You should definitely ask about a stool sample to measure inflammation and to check for a possible bacterial infection. Keep a diary to document all your symptoms. Be as thorough as possible.
You're not alone.

 

[Jabee]

Crohn's can be anywhere in your digestive tract; I would push to get imagining of your small bowel since it sounds like you do have IBD.

 

[Sophabulous]

Definitely MRI and stool sample! Mine is all small bowel at the beginning and end as well so visible on upper GI endoscopy as well as colonoscopy. Did they manage to get a look at your terminal ileum do you know? That's often affected but not always so if they didn't go that far then you may not have an accurate picture.

Hang in there!

 

[Lady Organic]

Im sorry for your issues. Its possible you have IBS too. IBS can be very difficult in some individuals.
have you tried any diet approach? Elimination diet?
I'd try the Fodmap diet in case of IBS.
You tested for celiac disease and gluten?
I'd get imaging of small bowel too just to be 100% sure for possible CD. If they dont accept MRI, you can try simple X-Rays. Much less expensive. Although I believe chronic D is more common of colonic or ileal dysfonction. They took biopsies in your colon and in your Ileum? The doctor would get the result in a few weeks.
Mucus can happen even in a healthy colon. Blood can happen as a result from internal hemorrhoid from chronic D. These symptoms do not sign an IBD diagnosis.
Wishing you well.

 

[jaj207]

I don't think they got into the ileum. The Dr actually spoke to my mom in the waiting room and not me. I never even saw him except when he first came in right before they put me out.

I had diarrhea when I got home and terrible cramping and mucus since.

He said he didn't see anything at all. I hate having to be pushy but I will have to ask for an MRI.

I just don't understand bc even with my prep, I had mucus coming out thick and yellow/green up until I left and immediately when I returned home. So I don't know how he missed it.

 

[ronroush7]

Maybe you need a second opinion.

 

[DanaBanana]

I agree with Ron.....I'd be inclined to look for a second opinion. Also, I'd request copies of your medical records, being sure it includes this Dr's dictation of the scope.

 

[Pug Gamer]

I do feel for you, i know what that frustration feels like when you just want a diagnosis so you can know what your dealing with, and how to treat it. I went through the same for 7 years of no testing, then 2 of tests not showing anything. I had colonoscopy, endoscopy, xray, scan, MRI, bloods and stool sample. Only thing that showed was barium MRI and stool sample. As mines in the terminal ileum its hard to find. Id push for that..

 

[Lady Organic]

as mentionned, I 'd go to the hospital archive department and ask for doctor's report and biopsies report. You will know if ileum was examined. Its very unlikely the dr didnt check for it as this is the most common site of Crohn's disease and all GIs know that. if colonoscopy went fine and you were asleep, the dr most likely reached that part without any difficulty. Biopsies should also be routine procedure.