Colonoscopy/Endoscopy Update

Hi Crohnie8...I ask this same question all the time. I'd like to know why I'm so fatigued all the time...the GI suggests that it might be depression while the therapist suggests that it might be the Crohn's. I know that things are off but they just can't pinpoint it...very frustrating. Anyway, your posting caught my attention because of what happened to me in 2006 (I'll skip over the long details). In preparation for ileostomy surgery scheduled for the spring of 2006, I had a colonoscopy & bloodwork, both of which came back 'clean'. Following my surgery, I was told that what was supposed to be a 'temporary ileostomy' was now considered a 'permanent ileostomy' due to the internal damage discovered during surgery. When I questioned how my colonoscopy & other tests (MRI's, etc.) didn't show anything, the surgeon stated that the damage was too high up to be seen during a colonoscopy & not detected by the other tests. A highly experienced GI that I was referred to during the weeks before & after my surgery, believes that if I have my rectum & the 10% of colon I have left removed, that it may improve my overall health. There's much contradiction...I have severe Crohn's yet many of my tests appear 'clean'.  I lost my lawsuit for LTD & one of the pieces of evidence against me was that, in 2003, I also had a 'fairly clean' colonoscopy. I totally relate to what you're saying...I rarely feel well & while some of it may be due to stress/anxiety, I believe that 90% is due to having a chronic autoimmune illness. I stress the word CHRONIC. One suggestion...make sure that they check your thyroid levels. For yrs. I was told that they were fine & then suddenly, I was diagnosed w/ Hypothyroidism. I also complained of feeling faint all the time...it took 2 yrs. before a cardiologist figured out that I had an irregular heart rhythm (not serious but can cause a person to faint...initially it was blamed on anxiety even though I adamently denied this...I have panic attacks & knew that this symptom was unrelated). You need to continually speak-up to any & all of your doctors. We all do. Keep me posted & feel free to vent your frustrations. As I said, I'm in the same boat & therefore, totally relate to how you feel. Hang In There!

My GI NP called today, and said that her and my GI think that the crohn's is where the scopes cannot reach. They are afraid that it is hiding in my small bowel so I am having an upper gi done and making sure I have no strictures then they will do a pill endoscopy. Hopefully this works.

Hi Crohnie8 & Everyone...reading LavenderBlue's post made me remember something. When I was taking 6-MP, I use to dry-heave (often while grocery shopping..sooo embarassing   !) & used to throw-up alot, mainly in the am. I discovered, over time, that I was becoming more & more sensitive to most drugs. My former gastroenterologist (oh, how I miss her) eventually decided that we could try lowering the dosages of my drugs & see if they still did the job. Lo & behold, what a difference! While I still suffered from side-effects, they were much less intense. I even started refusing certain meds such as Flagyll & from then on was always prescribed Ciprofloxacin. To this day, I'll start on 500mg & slowly decrease the dosage over the 10 day period (sure, they'd like me to start on 1,000 & stick w/ it but, if it works, why overdose). For approx. the last 10 yrs. I do this w/ almost all drugs. In fact, I fought w/ the anesthesiologist at Mass. Eye & Ear, stating that I didn't want a narcotic & definitely not Fentanyl. He had no choice but to give in...I did get a narcotic but a low dose. Since they switched to Fentanyl for colonoscopies (at least at the hospital I go to), I got so sick for the first time (& this was my 7th colonoscopy). Ever since, I have the test done w/out any drugs (not comfortable but I only have 10% of my colon). My sister, who gets violently ill from just the sedatives (oddly, I'm fine w/ these & no, she doesn't have an illness), requested the lowest possible narcotic dosage & no sedative, for her colonoscopy...for the first time ever, she didn't become ill. Remember, it's your body...you may want to check the dosages of your drugs & discuss this w/ your doctor. I used to be too intimidated to speak up but after years of drugs, tests, etc., I found my voice & glad that I did!