Colonoscopy/Endoscopy Update

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Gloriousm84
Regular Member


Date Joined Nov 2007
Total Posts : 114
   Posted 2/19/2008 10:24 PM (GMT -7)   
Alrighty so I had my scopes today, and they went well...fell right asleep and actually woke up nauseous so that was annoying, but I am feeling a bit better. Now the doc said he didn't see anything crazy and that it looked pretty good. This seems like great news, but then why do I continue to feel so sick. I know its not in my head because I can go to the restroom 10 times a day...and feel so nauseous all day as well accompanied by crazy fatigue. They took biopsies so they are checking for any microscopic abnormalities as well as celiac, and then we will go from there. Has anyone else had this happen to them? You feel like crap, but your tests are fine? My blood work is odd though..10 hemaglobin, 29 hematocrit, 33 SED rate...what is the deal? I just want to feel normal...not even that just better! Sorry for my rant. I hope everyone is feeling well and having a glorious evening!
 
 
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Remicade every 6 weeks, 6-mp, Nexium (GERD)
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines, GERD
Surgeries: Spleen, Gallbladder, Tonsils, Adenoids, foot of terminal Ileum, Appendix, Ileocecal valve, bit of colon


fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/19/2008 11:13 PM (GMT -7)   
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! tongue
Fuzzy:
25+ Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement
Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye medications used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 2/20/2008 3:28 PM (GMT -7)   
hey crohnie8-

i feel your pain. I have felt absolutely horrible for the last 6 months and my dr. really does believe i'm sick (thankfully), but we just can't find anything wrong. bloodwork okay except for a little anemia. colonoscopies look great (at least the 12 inches of colon i have left look good).

But i feel the same way. serious fatigue where i don't feel like i can even get around my house or walk outside, nausea, occasional vomitting, headaches, D 24/7, and a totally overactive gut which makes me feel like i'm brewing an alien inside of me. I don't know if its the tpn thats affecting me or the Imuran or neither. Is see that you are on 6mp, which is similiar to Imuran. I know that can cause nausea and vomitting.

obviously i'm no help to you at all, but i just want you to know you're not in it alone! sometimes i wish i had a giant neon arrow sign that just flashed "CHECK HERE" when I didn't feel great so I'd know what the deal was.

cheers, and hang in there
lavender


Gloriousm84
Regular Member


Date Joined Nov 2007
Total Posts : 114
   Posted 2/20/2008 8:21 PM (GMT -7)   
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.
Diagnosed: 2003, age 18 (had issues with it since I was 12)
Meds for crohns: Remicade every 6 weeks, 6-mp, Nexium (GERD)
Other medical issues: Hereditary Spherocytosis (hemolytic anemia) iron deficient anemia, polyarthralgia, ovarian cysts, Migraines, GERD
Surgeries: Spleen, Gallbladder, Tonsils, Adenoids, foot of terminal Ileum, Appendix, Ileocecal valve, bit of colon


chronie24
New Member


Date Joined Feb 2008
Total Posts : 7
   Posted 2/20/2008 8:58 PM (GMT -7)   
I def. understand where you are coming from. I have had alot of pain and had an abnormal Ct scan last week so both my GI and I were both surprised that the colonoscopy didn't really show anything and he even went 10 cm into the small bowel because he thought for sure it would show something. So now tomorrow I have to go for more tests and I am just hoping that something will show up so I can get rid of this pain.. Also I too have been extremely tired lately and I am waiting for results now. Luckily my doc knows me well and knows when I am really not feeling good so he has never told me its in my head-- he just keeps trying new things til we get to the bottom of it. So good luck to u and I hope u start feeling better soon!

fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/20/2008 10:20 PM (GMT -7)   
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  redface  !) & 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! tongue
Fuzzy:
25+ Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Ciprofloxacin as needed; Children's Vitamin/B-12 Supplement
Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism
 
Several Eye medications used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)

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