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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/10/2010 3:25 PM (GMT -7)   
I've been over on the UC board and the Ostomy board. I had the colectomy and j-pouch surgery in December and my last takedown at the end of March. I found out today that I have Crohns Disease after all. I continued to have problems after the surgeries (excessive hospital admissions for dehydration, lost 80 pounds, TPN and fluids daily, nausea/vomiting, etc.). They weren't sure what was going on, thought I had chronic pouchitis, I had a lot of different tests done. I had an upper scope done and a pouchoscopies to rule out Crohns but apparently they did not look above the pouch, which was bleeding and inflamed and obviously CD. I'm getting 300 mg of hydrocortisone through IV now and will probably start on Humira next after leaving the hospital--depends what my GI says, I guess. I just saw him for my first visit since last fall when he referred me for surgery. My blood tests always said UC and not Crohns, too. I was put on Entocort when I saw the GI recently to try to control the "pouchitis".
I did Remicade, Asacol, and Pred for the whole year of 2009 when they thought it was UC. I developed a lot of side effects from the Pred and was on high doses often (up to 60mg). During all of that, I was pregnant and had a wonderful, gorgeous son, though, who is now 14 months old.
Anyway, just an introduction and I don't want to get too long. I've explained things so many times to countless doctors so I'm a little worn out over it all anyway.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/10/2010 3:38 PM (GMT -7)   
Oh, Pam. How did you cope with the news that you had Crohn's and not UC, after having gone through all that? I'm so upset for you...

You're very welcome here. I hope the hydrocort helps and that you start to feel better soon.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/10/2010 3:53 PM (GMT -7)   
I don't know. I guess because I wasn't that shocked and have spent the last 6 months searching for the answer and being told that no one knows, so it's kind of nice to know that it is this and always has been. I always questioned whether it was but was told it wasn't so I just had no idea what was going on and why I was still so sick after surgery. To know it's real, I'm not imagining things, and I might be able to find a medication that will work is nice. To know I will always need meds when I was told I was getting the "cure" for UC and would have a great, med free life is sad, though.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease
Lomotil 2 Tsp. (4/day), Flaygl 500 mg (2/day), TPN 14 hrs/day, IV fluids 4 hrs/day, Prednisone 5 mg (1/day), Florinef .05mg (1/day), Culturelle (1/day), Entocort 3 mg (3/day)

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