Hi, I can only talk about my daughters experiance with her ACE. She had her ACE done for motility issues, she was 6 years old, when we had that done. We fought a good fight for 5 years trying to make...
Hi Allie, I have kept up with you and have read all your posts...My daughter who just turned 13 has the same problems as you and we tried several things over the years like you . We started with the...
Hi Murphy's Mom, I agree with Pelztier86... My daughter Takera who just turned 13 , is almost identical to Pelztier86 story and symptoms, but she has had many more operations, and along with her GI...
Hi Alibee, I asked Takera (my daughter) about the breath test, to see if she had any discomfort etc from it, and she could not remember if it bothered her....so she said that was a good sign because...
Hi, So glad that your appointment went well and you have found a dr that knows what you are dealing with !!I know that makes you feel better mentally at least :-) Keep us posted, and you will be in...
Hi and Welcome !! Going to a teaching hospital is a good idea, espically since they have a motility area. As far as your age I don't think that has any thing to do with it, my daughter just turned 13...
Hi, Sorry to hear that you & your daughter are having so many problems. My daughter ,Takera who is now 12 yrs old does not have uC,but has had intestinal problems since birth and after many...
Hi Lizzie, I hope that today is a better for you...just take it day to day,or even hour to hour...what ever gets you through!! Takera,s drs said that from there experiance w/ cases that are so...
Hi Lizzie, I,m not sure you remember me,but we have talked before...My daughter Takera has had the same history as you,and went through alot of the same things that you are going through... Takera is...
Hi, I can only tell you my experiance that happend to my daughter,who is 12 yrs old...your story is very similar to hers.she now has an illeostomy,but we did that only after everything else...
Hi Lizzie, I have been reading your posts and been praying for you!! We have talked before....my daughter takera went through the same things as you and we ended up with an illeostomy....but like I...
Hi Lizzie, I have not been on line in a while,but me and Takera are in the hospital(she has a central line infecton),and I am finally getting caught up on reading all the posts...I,m so sorry to hear...
Hi KAP, I have heard they do have really good docs there also. I know there are some people on this board who have gone there...Maybe you should make a seperate post w/that subject...I'm sure you...
Hi, My daughter had to have an open gall bladder operation for the same reasons..she is only 11 but she said that was the easiest operation that she has had. her incision was only about 4 inches,and...
Hi, My daughter lost alot of blood during her operation also. She had to have a blood transfusion,and now is on iron supplements also...I was very scared that it would slow her output also,but they...
Hi KAP, My daughter had CI,and had her colon taken out...but during this whole process they were doing testing on her small intestine also,to see if there was any problems...turned out that there...
Hi Lizzie,& everyone... My daughter,had botox injections...before her sub-total,and after her sub total and after her total...We did not see any change...I have talked w/ other people that don,t...
Hi all, We live in TN-just outside of memphis...only been here 3 yrs-hubby got transferred...but orginally from NY-about 45 miles north of NYC,but we travel to Boston Childrens,for Takeras care!!...
Hi Hopestar, I,m sorry to hear that you are have some post-op problems...My daughter had the same thing happen to her...she had a TC on 6/5/08 and after 6 weeks in the hospital,we still had no...
Hi, I,m w/ evetyone else...my daughter who is 11,just got the rest of her colon,and her rectum out and got an illeostomy...the best thing we ever did!!!She is much happier,and almost med free...It is...
Hi Hopestar, It is normal to feel scared before s/x...but try to stay positive,and trust that which ever way it goes..w/ a bag or w/out,GOD is in controll. I know that that can be hard to belive...
Hi My daughter does use both of those items...does it matter that she is only11 years old? You can e-mail directly at [email protected] . Our insurance only gives us 1 box of bags a month,so...
Hi Dnri, My daughteralso goes to Boston , she goes to Boston Childrens,and like i have posted before...she has had problems since birth,and after alot of trail and error we had to get an illeostomy...
Daer Dnri, My daughter who is 11 just went through the same thing...she had a total Colectomy on 6/5/08 and after 6 bweeks...no bowell sounds,being NPO,,having an ng tube for over 3 weeks,on...
Hi All Yes we have to vote very carully this November....I,m not sure what our system needs,but I DON"T want to go to a haelth care system like canada or europe...my daughter would have died waiting...
Hi, We are new to this also,my daughter just had her illeostomy s/x on 7/9/08,and we have only had 1 leak,and that was when we used the paste. We have since been using the eakin wafer,and we have not...
Hi Sugarbug, Yes she is doing great,that is and was the grace of GOD!!! No the drs don,t know why she was born w/ all the problems w/ her intestines...that has been one of the most frustrating things...
Hi Worse... Your story sounds alot like my daughters...I just wanted to encourage you ,my daughter ended up getting a bag,after many s/x,many tests,many medicines 11 years of not going to the...
Hi all It has been a long journey...but we are finally going home tomorrow!!! My daughter had her TC on 6/5/08,and they connected her small intestine directly to what was left of her rectum,and then...
Hi 2 much 2 bear, My daughter is going to a bag after a TC,but not because of incontinence,but because she still could not go to the bathroom.I have not read about alot of people going to a bag...
Hi Everyone, I just wanted to give you all an update on my daughter Takera...she had her TC on 6/5/08 and we are still in the hospital...her s/x never worked...she has not gone to bathroom at all. We...
Hi All HAPPY JULY 4th!!!! Well Takera had all of her testing yesterday,and they placed a rectal tube in. They did motility testing on her small bowell,and her stomach on up...We don,t have any...
Hi everyone, Well just wanted to let everyone kno that we had a "Team" meeting last night about my daughter Takera...it went very well,and thr doctors really listened to me,and all my thoughts...and...
My daughter just had a TC on 6/5/08,and just last week they did a lower GI study on her .They used something that looked just like water,and I was told it was water based so nothing could form a...
Hi All, It has been a little while since I have given an update on my daughter Takera...she had her TC on 6/5/08,and we are still in the hospital...thigs are not going as well as planned/thought....
Hi bennie, Mydaughter is only 11 ,so we have always been in a childrens hospital,or a pedatric floor...like summerstorm said being in the hospital is,nt always fun...but w/ a chilrens hospital or...
Hi Resa, She is up walking,even getting physical therapy...no she is not eating yet because Ng tube is still in and getting about 1 liter of return a day,and still has no bowell sounds,so drs say...
Hi 2much2bear... I was not given that % at all. My daughter is 11 yrs od and has been fighting the same thing all of her life...tried various s/x,medication etc and nothing worked. she just had a TC...
Hi mommyphotographer, My daughter is 11 yrs old and she had many s/x for colonic inertia,or her drs call it a neurological colon. She had no motility at all since birth...She does not have a bag at...
hi Mommyphotographer: It depends on the percentage of the colon that they are taking out...last year they took 50% of my daughters colon out...but left all the rectum,so they called it a sub total....
Hi all!! I haven't posted in a few days,so I just wanted to give you all an update on my daughter Takera...her s/x was 6/5/08...she had a TC,also removed most of her rectum,and a small peice of her...
Hi Sub Total Here I come... I have not personally gone through a sub-total or total colectomy...but I have been w/ my 11 yr old daughter all the way...she had a sub total last mayof 07 and just last...
Hi Sub Total Here I come- My daughter who is 11 had a sub-total last yr and just had a total done on 6/5/08...I did not have a plastic surgeon do the close on either s/x but her surgeon did do a...
Hi Everyone!! ROBIN- Things are going slow...Takera still has a fever,but not as high...they are a little concerned,but I keep waking her up and she is blowing bubbles,and that little ball...
Hi Everyone!! Robin- Thank You so much for the prayers and the encouragement...We got back to her floor at around 8:30pm...The DR says from a technical point of view it went relly well It took longer...
Hi to Everyone!! I just wanted to give an update on my daughter,Takera...she has been in s/x since 7:30 am...they put her under at a litttle after 8:00 am and they made their first incision at 8:45...
Hi All...Hope all is well w/ everyone...well takera is the hospital and we had her final colonoscopy today...They wanted to make sure her stricture was still the same,and I quess make sure that we...
Hi all..Just wanted to give an update..we arrived in Boston yesterday,got admitted today and have started the clean out!!! This is the worst part..they always give her golytly from both ends...
Hi Bennie- My daughter had a open Sub-Colectomy and her scar goes from her navel to the pelvic bone...she also had an open gallbladder s/x done and her scars overlapped,but it looks great...only if...
Loriann- I,m new to this web site also,but it has been a GOD send...look at and read Total Colectomy1-19...you will find alot of good info...but for the most part everything that i have read,it is a...