still not sure I should be here

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aned
Regular Member


Date Joined Mar 2009
Total Posts : 105
   Posted 6/9/2009 2:31 PM (GMT -6)   
Several weeks ago I was hospitalized for bleeding and pain.  The colonoscopy showed moderate inflammation and edema.  I was given IV antibiotics and steroids and diagnosed with nonspecific colitis.   I was referred to a teaching hospital and the colonoscopy there showed no inflammation and I was diagnosed with irritable bowel syndrome.  Three weeks later I started bleeding again and having diarrhea.  I just followed up with my GI and he stated that he still feels like it is probable ulcerative colitis and wants me to continue on steroids and Asacol.  He also suggested that I might want to seek a third opinion since I have two differing opinions about what is going on.  My question is, won't a third opinion mean more testing?  I have had two colonoscopies, a barium enema and a CAT scan all within the last month or so.  I am really tired of procedures!  lol. I guess this was more of a vent than a question......
37 y/o female
non-specific colitis dx. 2007
ulcerative colits dx. 2009
diverticular disease dx. 2009
Asacol-failed
Entocort-failed
Colazal-current, but not working yet


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 6/9/2009 2:44 PM (GMT -6)   
The bleeding is a sure sign that it isnt Irritable Bowel syndrome. Dont give up like I did with that explanation. I could have saved myself years of misery had I of gotten the proper treatment right away.

herbalgerbals
Regular Member


Date Joined Feb 2009
Total Posts : 85
   Posted 6/9/2009 2:46 PM (GMT -6)   
mmm, I think a third opinion wold be fair.. I mean, more testing yes.. but this is your health were talking about, and I think you would want to figure out whats going on as soon as you can so you can get help ya know?

Sounds like colitis to me, I have ulcerative colitis, and its quite a pain in the ass..
Balance is Key. Nature Intended.
Eat for Optimal Digestion.
Fruit. Vegetables. Meat.
Veggie Juice, Coconut Water.
Raw Honey, Raw Bee Pollen.
90% Raw. 10% Cooked.
5% Fat. 10% Protein.

Food Combining.
6mp. Colazal.
Oxycontin.


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 6/9/2009 2:48 PM (GMT -6)   
I hope you have good health insurance. That is pretty poor on their part after all them tests to not even know if you have IBS or a IBD.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/9/2009 2:58 PM (GMT -6)   
Well, after the steroids it's not surprising that your c-scope didn't show inflammation. I'd get a third opinion, too, but take the records from your last two c-scopes (including pics, if there are any) to your new doctor.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/9/2009 3:58 PM (GMT -6)   
It can take months or years to diagnosis IBD. Hang in there.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


aned
Regular Member


Date Joined Mar 2009
Total Posts : 105
   Posted 6/9/2009 5:34 PM (GMT -6)   
Thanks for the support everyone. Right now I have made the decision to proceed with my current GI as though it is confirmed IBD. I am starting Asacol and Entocort and will go back and see him in three months. I am basing on the fact that I feel very comfortable with this doctor. He actually sits down and has real conversations about what he thinks and what the options are.

I don't think it is IBS. That could co-exist, but everything I have read says that if you are bleeding it is not IBS and I am definitely bleeding. Some form of colitis makes the most since to me. Guess I will be hanging out here for the time being.
37 y/o female
non-specific colitis dx. 2007
ulcerative colits dx. 2009
diverticular disease dx. 2009
Asacol-failed
Entocort-failed
Colazal-current, but not working yet


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 6/9/2009 8:10 PM (GMT -6)   
Wow, it sounds like we both have the same thing! I thought I was the only one on her with IBD and diverticulitis. It took me about 3-4 doctors and going to the Mayo clinic to get diagnosed. the others always said it was IBS despite my complaints of bleeding. Four years ago, I got sick, had a CT scan and colonoscopy. The CT scan said inflammation, the colonoscopy was negative. So, they said it was IBS and to get lost. Dec of last year, I got real sick. The CT scan said it was diverticulitis. They gave me 3 different antibiotics and I was no better. I went to Mayo, they did a colonoscopy and said it was diverticular colitis. So, I feel in prior years, they were missing something. I think I had the colitis first though because I would have episodes of d and bleeding that would come and go. Then I got real constipated in between, hence the diverticular disease. So, that is how it happened for me. It took 3 weeks for the colazal to work. I take benefiber once a day. I think that helps a lot. I still have to watch my diet though.

How did your disease start out? Were you constipated much or did you have a lot of d and bleeding? Mine was more constipation with a few bouts of diarrhea a year with some bleeding. Stay in touch and good luck with it all. I hope the colazal works soon for you.
diagnosed 1/09 with colitis & diverticulitis
 54 yo, colazal, fish oil, synthroid, cymbalta
good results w/ acupuncture


Jenn C
Regular Member


Date Joined May 2009
Total Posts : 31
   Posted 6/10/2009 9:33 AM (GMT -6)   
I still don't have a diagnosis, one Dr said she thought it was UC, the other thought IBS (I've been diagnosed with IBS 14 years ago, and these are new symptoms, so I don't buy that diagnosis). I had a colonoscopy Friday the 5th but won't know results of the biopsies until the 24th. A third opinion sounds good and I will probably do the same depending on what the Dr says on the 24th. At least you have meds, all I have is an antispazmodic and it doesn't work, just gives me a headache when I take it.
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