Afraid to be officially diagnosed

iPoop said...
A ulcerative colitis diagnosis usually requires a colonoscopy, biopsy results, and a stool test that's negative for pathogenic causes. A pillcam is an interesting way to get a look inside without an invasive colonoscopy but it will not give you biopsies and I don't believe pillcams are widely used for diagnosis, so finding a willing gastroenterologist may be tough.

If the colonoscopy prep is a big concern, I would consider asking instead about a flexible-sigmoidoscopy. As the flex-sig has a much easier prep, just two fleet enemas (essentially saline or a salt water solution) a few hours before the procedure; nothing gross to drink. A flex sig can examine roughly half of the large intestine, and can take biopsies. As uc starts at the rectum then it can be enough to diagnose you.

Do you take anything for your anxiety? Some here take prescriptions to help with it.

It's true that ulcerative colitis is characterized by periods of remission and flares. However, it's also true that those who take their prescription maintenance medications for uc have longer periods of remission, and shorter and less frequent flares. The anti-inflammatory medications (meslamine, lialda, asacol hd, apriso, etc) prescribed for uc have proven affect of reducing colorectal cancers, are very well tolerated by most, and have a long history of use.

I did find a place locally that specializes in testing for IBD disorders. They also offer the pill endoscopy, but the real issue will be insurance paying for it. Apparently a colonoscopy is a lot cheaper. I have a feeling insurance will end up dictating my options..../sigh.

The flexible sigmoidoscopy is an idea, but I have a feeling doctors may want to look further. I guess it won't hurt to ask.

No I don't take anything for anxiety. I am in mental health....the irony is not lost on me. I have plenty of non-pharmacologic anti-anxiety tools at my disposal to use. Just because I posted I have fear about medical procedure does not mean I need a xanex.

platinumpixie said...
It is unwise for you to put off a colonoscopy and possible definitive diagnosis. You mentioned having exploratory surgery but it's listed as a diagnostic laparoscopy which is a minimally invasive "look-see" with a camera. Did they do any type of resection? What type of surgeon did the surgery? You mentioned appendicitis and "inflammation"...did they do an appendectomy? For argument's sake, let's say you've had UC since the age of 20. That's 16 years of untreated inflammation in your colon but you have no idea if it's limited to the rectum or if it's throughout your colon. You've passed the 10 year mark so your risk of colon cancer has now increased and you need to be screened more often.

Look, none of us want to belong to this club that gives us the ability to poop on command. I understand how your past medical experiences have somewhat traumatized you but there are excellent doctors and nurses who specialize in our disease, who are gentle and caring professionals and will answer all 127 of your questions. Yes, the bowel prep sucks, so take the previously mentioned advice of using miralax. My one last suggestion is don't try to negotiate your way out of a colonoscopy. You need, at minimum, a baseline colonoscopy with biopsies.

Yes, it was a diagnostic laparoscopy. They didn't remove anything and left my stupid appendix in. I know its a simple procedure but it took me a really long time to bounce back and I was in my first year of college at the time and fell behind and really was put off by the whole thing.

I am not sure about the excellent doctors and nurses in my city. Maybe if I still lived in SoCal a greater variety would be available, UCLA, USC, Loma Linda etc. The best I could do here is some Harvard doc who is board certified and does like satellite care from the testing center....god I hate this town.

Biopsies? I thought they just looked around? I thought you only needed a biopsy if they found polyps or suspected celiac or something?

You need biopsies in order to determine if you have IBD and what kind. It's better to know what type you have, rather than just say you have IBD. You can treat it according to the illness you have.

No, it doesn't hurt. You won't feel it. You may feel a little discomfort after the procedure, but you probably won't. If they do find a polyp, they'll remove it, then send it to the lab.

The only thing I've felt was a little grogginess, but meds that they use usually do that to me.


Hope this helps.

I hear that. I had Luigi's lemon ice during the prep and it was so good! And don't forget, it won't be a week's worth that you have to eat. Once you know how your body is reacting to the prep, it won't be so bad, just watch some good TV or get a good book and that'll make it all go faster.