question for rachel's mom

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/24/2011 10:27 AM (GMT -6)   
 
 
 I read in another one of your posts that cc and mayo do the surgery in three steps when on remicade. Can you explain more on this. thank you

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/25/2011 8:55 AM (GMT -6)   
Sure - my daughter was on a high dose of Remicade which she received every 6 weeks. CC and the Mayo Clinic have found that people on Remicade are more susceptible to sepsis during surgery and they have made it their protocol to do the J-pouch in three stages rather than two to avoid that complication (yes, please - my daughter has had sepsis before and we never want to face that again). I know it seems like it is harder to put someone through three surgeries than to do it in two - it definitely drags out the whole process to a 6 month ordeal - but the first surgery is easier to get through in the 3 step process. My daughter had most of her colon removed in the first surgery with just the distal sigmoid stump remaining. She had an end ileostomy done. The next surgery is removal of the sigmoid stump and formation of the pouch with a loop ileostomy. The final surgery will be take down.

How's your daughter doing? My daughter has been dealing with allergic reactions to the adhesive on the ostomy supplies but I think we are getting that under control now. She's been an itchy mess but is starting to see some improvements.

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/25/2011 10:13 AM (GMT -6)   
Thank you-my daughter was on a high dose of Remicade also,which she received every 4 weeks. Her surgeon never mentioned that. I will have to ask him his thoughts on that. I wish I would have asked more questions first, but it was time for her next Remicade or to switch and try another medicine. She didn't want to try another medicine and another 4 months to see if that would work and miss another summer. She has been sick for 15 months and nothing seemed to put her into remission. They did do hers in a 2 step process. She is doing great, they let her go home a day early. (Other than dealing with the bag). She has your daughters e-mail address, I have been trying to get her to write her and ask how she is dealing with it. Maybe that will come in her own time. Her GI doctor really wants her to wait a year before her takedown. She doesn't want to wait that long. That was really nice of your daughter to offer to talk with mine. Thank her for me.

Rachel's Mom
Regular Member


Date Joined Feb 2011
Total Posts : 92
   Posted 2/25/2011 11:55 AM (GMT -6)   
I gave Rachel your message and she reiterated that she'd be more than happy to communicate with your daughter. It might be a comfort to them both. She well knows about missing out on summers and fun. She was diagnosed her freshman year and missed so much throughout her high school years and now college is on hold. She has found it comforting to connect to other young people who've had successful j-pouch surgery. Has your daughter been reading on this forum at all? There are a lot of good and compassionate people on here and it may help.

Wow - the doc wants your daughter to wait a year before takedown? Is that because of Remicade? And I was complaining about our 6 month ordeal!

And mom - how are you doing? If you ever need a shoulder don't hestitate to ask. I think we moms have an especially hard time seeing our kids go through something like this. It's always been our job to take care of them and it is a helpless feeling to be so powerless to the ravages of this disease. If you're like me, you'd willingly take it from them. Sometimes we moms need to lean a little, too - I'm here if you need to lean.

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/26/2011 6:55 PM (GMT -6)   
Her GI doctor wants her to wait. I was talking with her on the phone, I didn't think to ask. I just think she has been so sick she just wants to wait to make sure everything is okay with her. She goes back to her surgeon in a couple of weeks. I will have to ask him. I know he said 8 weeks. She has read on here before and posted, I don't like to force her. I am sure she gets on here and doesn't say anything to me.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 23, 2018 11:04 AM (GMT -6)
There are a total of 3,005,857 posts in 329,271 threads.
View Active Threads


Who's Online
This forum has 161808 registered members. Please welcome our newest member, bumed.
311 Guest(s), 9 Registered Member(s) are currently online.  Details
DBwithUC, George_, Ahmed, logoslidat, HeartsinPain, 07kr5, Zimica, VinceInMT, colitisresearch