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pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/30/2009 11:23 AM (GMT -6)   
I saw my doctor again on Tuesday. I have had my 3rd Remicade infusion, but I am still not doing a lot better and the bleeding is coming back. I have a colonoscopy scheduled for August 19th. My doctor said if things don't look too bad, we will increase the Remicade dose and if things do look bad, he is referring me to a surgeon. I am so disappointed that the Remicade is not really working. I don't think I can actually have the surgery. I have a 3.5 month old baby, school starts again at the end of August, and I have an internship. I won't have any time to do it. My husband is going back to school, too, and we can't afford for him to take off of work to help with the baby.

The good news is my blood sugar is normal after getting down below 20mg of Prednisone (I'm taking 5mg now so I will be completely off it in a few days). I have to start taking iron again because I am anemic and my heart rate was quite high from that.

I'm really starting to feel more sick again. I have no appetite and I am feeling nauseous again and I am cramping quite a bit.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
5 mg Prednisone (tapering from 60mg a day)
Started Remicade 6/11/09 (3 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

Post Edited (pam222) : 7/30/2009 12:00:15 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/30/2009 11:55 AM (GMT -6)   
If surgery is warranted, and you choose the jpouch, you could always stage it and get the temp ostomy in place. You will still have a recovery from it but with a few weeks of help around your home you would bounce back. I think the one thing surgical patients often overlook is the increased health once the colon is gone. You will feel so much better by not having a diseased colon that recovery will be easier to deal with (not that you don't have valid concerns on child care). Many patients choose to keep the ostomy longer and have the 2nd surgery when its convenient for them. No problem 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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/30/2009 11:59 AM (GMT -6)   
Oh, I didn't realize that. Thanks
I had a c-section in April and I recovered very fast. I didn't get any pain medication past the second day in the hospital and I was up and around just fine. I know this doesn't mean I would have a fast recovery but it makes me feel a little better. I was terrified prior to my c-section and it turned out great. Since I just had a c-section I'm not sure if I can have this surgery so soon either. I asked my doctor and he didn't know
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
5 mg Prednisone (tapering from 60mg a day)
Started Remicade 6/11/09 (3 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/30/2009 12:21 PM (GMT -6)   
I have a high tolerance to pain too and was off morphine within 24 hours of my colectomy and totally off all pain medication by the time I was realeased from the hospital which meant I could drive right away. I was fairly ill going into surgery and thought I would be out of work for 6 weeks but I went back to FT within 3 weeks of surgery. I also did not have any help at home (single and live alone) and managed fine.

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

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