Doctors are talking about surgery!
Mon, February 14, 2011 8:01 PM
I have posted about my son in the past. He was diagnosed with UC about 4 years ago. We have been through many medications. He started Remicade in November along with steroids after a week hospital stay. He had a flare in Jan and another right now. He is back on steroids again for the 3rd time since Nov. Now the doctor is talking about surgery. I am so scared. I have never found any diet that has helped and am told the only cure is to remove the colon. I don't know how I can make this decision. Is there anyone that has faced this enormously difficult decision?
Joined Jun 20, 2008
Mon, March 07, 2011 12:21 AM
Reply posted for SherwoodMaZ.
Hi,
Sending lots of prayers and hugs your way.
Our daughter had a 3-stage colectomy with IPAA at age 4. She is now 12 and eats whatever she wants whenever she wants, uses the toilet 3-5 times per day, gets excellent grades, and is involved in several afterschool activities, including sports. The last bout of pouchitis she had was 4 years ago, and she keeps it at bay with Culturelle and VSL#3.
She was hospitalized three times prior to the first procedure. Massive blood loss continued despite IV cyclosporine, steroids, Remicade, and 6-MP. Surgery was our only remaining option.
There is no sugarcoating the fact that the operations and their aftermath were very rough, but she now has a quality of life no one could have imagined while on the meds.
Hang in there. It may sound unbelievable now, but things can get better.
Nina
Joined Oct 12, 2009
Fri, February 18, 2011 5:07 PM
Reply posted for SherwoodMaZ.
Sending hugs your way. It is a difficult decision - I know. When it all boils down, quality of life is a deciding factor - at least for us.
My daughter was diagnosed in January 2008 with UC. The first year passed with minimal flares or problems. March of 2009 rolled around and we have been on a downward spiral since. We too have tried diet changes and have exhausted every medication available with no success. In October we heard the word "surgery" for the second time.
It is bittersweet, but my daughter had her colon removed February 3. She is healing well and will soon head back to school. She is a HS freshman and was missing so much "living" at home and at school because UC had (basically) crippled her.
Prior to surgery we contacted the CCFA in our area and they were able to put us in contact with people that had been through the surgery. Their stories were inspiring - and helpful.
Although it has been only two weeks since she was discharged from the hospital - I am seeing positive changes. She is once again "living" - Just little things as she still tires easily, but that too will change. She is not napping 3 - 5 hours each day, we went to a movie and out to eat. She was so grateful to enjoy both without running to the bathroom. She even walked her dog for the first time in about 9 months - can't go walking if there isn't a rest room. Like I said, little things, but good things. We still have a road to travel, but it will be short compared to the past two years. If you have questions or wan to chat, please email me onedreamer@juno.com
Best wishes
Joined Jul 2, 2009
Thu, February 17, 2011 4:22 PM
Reply posted for SherwoodMaZ.
Hello,
I was in the same situation as you over a year ago. My daughter was only 3 when she was diagnosed with UC, within 4 months she was headed for surgery. She had 3 Remicade treatments and every other drug out there to treat UC and nothing worked. She was in the hospital for more than 60 days, needed 3 blood transfusions and an NG feeding tube. I was scared to death about surgery, to me it was my worse nightmare..that is until I realized just how much pain and agony my little girl was in.
Then making the decision to go a head with surgery was the best thing I could do. It saved my daughters life. An hour after surgery my daughter looked at my husband and said.."Daddy, look no more pain". She recovered from surgery so fast. In about 2 days she was walking around and going into the hospital playroom to participate in games and activities. I know surgery is scary, but if the medications are not working, surgery is the best thing for your son.
please feel free to contact me if you have specific questions. I know exactly what you are going through right now so if there is anything I can say or do to help make your decision any easier please let me know.
my email address is fhancock614@yahoo.com
katiesmommyJoined Sep 2, 2009
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