my GI visit today

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TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 7/22/2008 6:43 PM (GMT -6)   
Hi everyone! I went for the follow-up to my colonoscopy today. ugh. So, she couldn't see the "UC" in my cecum and ascending colon, but the biopsy did! (I may be in denial, but I take this as a sign of healing. I think the Asacol is working and it just hasn't healed me completely, yet.) Anyway, I still have active disease in my rectum, but there was still no disease in the rest of my intestine.
 
So, we still don't know my diagnosis. Because of the skip lesions, I may have crohn's. I'm scheduled for an EGD (?) the day I get back from my wedding! She's going to scope me from the top to see if I have anything in the rest of my GI tract. She's also going to test me for H. Pylori to see if I have a stomach ulcer, because of all that burning pain i've had in my stomach. (The zantac REALLY helps!)
 
I'm just bummed (no pun intended  tongue  ), because I thought I was better. (Even though I still have symptoms including bleeding.) I really wanted to be better for my wedding. The good thing is I've only been on asacol for 1 month- the GI said it takes 3 months to really get better. Then, she suggested entocort if i'm still having problems.
 
Thanks- it just helps to get it out there.
Tressa 35 (F) in WNY
unknown dx (UC or Crohn's), skip lesions, but I'm getting better!
Canasa nightly, Asacol 12/day, zantac twice/day for possible ulcer


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 7/22/2008 7:51 PM (GMT -6)   
Am I reading my story? I was having my first flare (I didn't know what it was at the time) during my honeymoon. Not too romantic at times! I feel for you. When I saw a specialist this week, I found out that my first colonoscopy in 2004 also showed spots of inflamation and then spots of healthy tissue. He too thinks that may indicate that I actually have Crohns after all this time. He said he couldn't be sure based on that. I may have to have those other tests in Sept. if my platelet count continues to rise and my iron levels stay low (indicating inflamation somewhere in my body). The specialist wanted to give my meds 3 months to work and then if I'm still showing signs of inflamation on blood tests, have upper and lower GI tests. I thought I was in remission. I'm not having D, mucus, or blood. I'm glad I'm not alone. I felt like I was the only one on here who doesn't know a "for-sure" diagnosis.

By the way, I just came off Entocort after 11 months. The specialist said that most of my inflamation was near the end of the colon and that Entocort doesn't make it that far and was probably useless to me. Wish I'd known that before taking it that long. I myself didn't feel like it was doing anything but my GI kept telling me that it was helping and that things would be worse without it.
  • 25 years old, married, Mommy to 18 mo. old 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 feeling better every day
  • Currently taking:75mg 6MP, 4 Lialda, Digestive Advantage Chrons/Colitis, Women's One a Day, Loestrin 24, and allergy shots every other week
  • Past meds: Pred., Entocort, Dipentum, and Canassa

 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 7/23/2008 8:46 AM (GMT -6)   
At least you're feeling better Mommy. (Is the pooh for Winnie or the UC? lol) It's frustrating to not know what's wrong.
The Asacol seems to be working for me. Are you on any rectal meds? They're the best for getting the end of the colon. My GI told me to use the Canasa suppositories (which I think are easier than Rowasa). She also mentioned yesterday that Rowasa is especially good for the left side. For some reason, mine is on the right!

Have you had any side effects of the entocort? I did some reading about it last night and it distributes near the terminal ileum at the bottom of the small intestine.
Tressa 35 (F) in WNY
unknown dx (UC or Crohn's), skip lesions, but I'm getting better!
Canasa nightly, Asacol 12/day, zantac twice/day for possible ulcer


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 7/23/2008 12:40 PM (GMT -6)   
Guess the "Pooh" could go either way. I was thinking for my UC when I made my scrren name.

I used Canasa for a few months and it didn't change anything. I too was told I had some inflamation on the right side by the specialist. He said that points to Crohn's too.

The main things I noticed from the Entocort were trouble sleeping, and I was very short tempered. After being on it a long time....like 9 months. I started to notice my face getting a little puffy but nothing as bad as a pred. moon face. I also had to have a bone density test for being on it so long, but everything was normal. I've been totally off for 3 days now and I feel like some of the bloat is coming off, but I know it will take a while b/c I'm wanting to lose some weight too that just would not come off while on Entocort. Thankfully I didn't gain 15 pounds like when I was on Pred. a few years ago.
  • 25 years old, married, Mommy to 18 mo. old 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 feeling better every day
  • Currently taking:75mg 6MP, 4 Lialda, Digestive Advantage Chrons/Colitis, Women's One a Day, Loestrin 24, and allergy shots every other week
  • Past meds: Pred., Entocort, Dipentum, and Canassa

 

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