Monday, August 2, 2010

Cecostomy, MACE, Malone, oh my!

As Esther-Faith gets a little bit older, and as we're getting better at the enema routine, we're starting to consider surgery to make her life a little easier and to give her more independence and freedom. And really, even though she doesn't seem to mind it now, at some point she won't want to have per parents help with a traditional enema.

There are a couple of problems, though. First, due to a ruptured appendix earlier this year, we can no longer opt for one of the surgeries that uses the appendix (or part of it) to create the hole in her abdomen through which she will administer the enema. Second, after what she went through earlier this year, she is ADAMANT that she will not be having surgery any time soon.

Do any of the readers here have experience with any of these surgeries? Have you read anything or heard anything about any of them? What advice do you have with regard to the effectiveness or usefulness of having one of these surgeries? How did it change your child's independence (for better or worse)? If it is best for her, how do I convince her of that?


Baking with Mom

9 comments:

Meilani said...

Anyone who I have talked to who has had the procedure done has no regrets. They love it. And from what I understand it makes life much easier. I know a little girl with SB who had it done just recently and she is 8 years old. I think her mother told me that it got to the point where what they were doing just wasn't working well any more. At that point her daughter could clearly see it was necessary. I also know of a 7 year old with one (the MACE) who is also very happy with hers. I think she had her surgery at age 5.

Mom said...

My daughter got the mace and mitrofanoff last December. She is now seven. We were using the cone with excellent results. We did not want to upset what was already working for us. Our daughter had started 1st grade and the cathing had its problems- so we wanted the mitrofanoff for independence. The mace seemed like the thing to do along with it for the future. It has worked out wonderful. We have had more infections in the urinary tract due to the mitrofanoff, but have not had any problems with the mace. It is a very sensitive site on her body although and she will not let us near it. One thing I did not know until we were about to get it done- is that the chait trap door needs to be changed out regularly- yearly or sooner. This is not a fun procedure when your child is so sensitive in this area. We had it put in in February- hopefully it will not be so bad the farther we get from surgery.

Mom of The Fields Five said...

Our Madilyn had the MACE procedure done in March. She did not have an appendix to use. Her doctors created a tube from part of her large intestine to connect to her belly button. It took them a three hours to complete it all because they took their time. Madilyn has already experienced major bowel reconstruction at birth so they made sure they did things carefully.

The recovery was a challenge because of the extensive nature of the surgery since no appendix was available. But, this is the best choice we have ever made!!!! It has changed Madilyn's life. She does not have a "button" like some do. We insert the cath right into a tiny hole in her belly button. We were told this would be the best route for her. We gave the surgeon all options and were grateful they were able to do things this way.

We had to really work with Madilyn to get her to agree to Surgery again. She had a rough spinal surgery 7 months early and she was not about to let anyone touch her. I almost doubted when things were so hard for her but once we got over the most difficult parts of it, she even said that she was so happy!

Leigh and Andy said...

I only know of one person (now 16 or 17) who had the MACE done when he was 5 and he and his parents all agree that it was the best thing that they could have done!! Good luck with whatever decision you come up and with and for getting Esther Faith to agree with you! :)

Kiki said...

My daughter just had the MACE 2 weeks ago and is doing great! She had other bowels surgeries and did not have an appendix either, so our surgeon used part of her colon and he said it worked perfectly. Jaya is 5 and this has been great - she has not had one poop accident since coming home from the hospital and and she loves to show off the cath in her belly! I would be glad to share more about our experience if you would like, feel free to e mail: kcdeckard78@hotmail.com!

Ashley's Mom said...

My son just had the MACE a little over 2 weeks ago. We are not able to use it just yet, but my son is very anxious. He has always hated using suppositories and I think this will greatly improve his quality of life. He is 15 years old.

Gretchen said...

I am thinking of al of these things right now too.... Thanks for the post and I enjoyed reading the answers you got... I hope you have a better time with the decision than I am... I am jsut so concerned and confused :)

Bonnie said...

My daughter just turned 4. She had a cecostomy several weeks ago and we access it with the Chait trapdoor. The surgery went very well, and they did not use her appendix, in case they need it later in life for reconstruction or repair. Her diagnosis is Spina Bifida. She was in the hospital for 2 days before (cleanout) and 2 days after. We are 'flushing' two times a day, but she still experiences frequent soiling thoughout the day. We're looking of the right 'cocktail' to use in her flushes. I'm looking for other patients who have had this procedure, and their experiences. While she is tender around the entrance, she is not in pain except when I open and close the trapdoor, and that is minimal.

Aly Jane said...

My daughter had a cecostomy tube put in (with the trap door) about 6 months ago, just a few weeks prior to turning 5. It has been a long, tough 6 months but we've now pushed out the blockage and seem to have the right cocktail to keep her flushed. She has SB and will be having surgery on bladder that will likely require her appendix. The hospital stay for the cecostomy tube was 6 days (3 days for cleaning out and 3 days for surgery and recovery). She was very sore after the surgery; more than the doctor expected. We were allowed to use the tube 2 weeks after surgery but by then she was very backed up again. For the first 4 months, she was sitting on the toilet for 1 to 1.5 hours per session and would end up vomitting about 2 out of 3 sessions. It was horrible, exhausting and heartbreaking. She was often sick for 24 or even 48 hours after each session. I missed 3 weeks of work the first 6 weeks after surgery to keep her home from school. We finally broke through the cycle by pushing her to use the cecostomy tube daily and sometimes twice daily if we didn't get a big movement in the previous session. We had been using the tube every 1-3 days but she was probably very backed up from not pooping for the two weeks after surgery and she was very sick from using the tube...it was a tough cycle to break through. It's now been 2 months of working pretty well and she's been able to be accident free for 24 hours many times. Sometimes though the water goes in and doesn't come out...then there's a huge mess in the morning. My daughter has a stretched out colon that is on the border of what the doctors would say requires to be reconstructed to remove the stretched out portion of the colon....this is probably a source of problems for her. I overall recommend the tube and it's a great option over wearing diapers and smelling like BM forever but I wish there was a way to replace the tube with something that is more comfortable (no trap door on her abdomen) and something that didn't need to be replaced yearly....hopefully they can clone her appendix in the near future.