Information for Malone/ MACE/ Appendicostomy - Disabled Living

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How long did your surgeon suggest the initial catheter remain in place for? Would you have changed the time frame? • After the surgery the tube (catheter) stayed in for three weeks. I found it beneficial to keep it as open as possible. So we used only two bandaids to secure the catheter and let the wound heal. It oozed some fluid for several weeks so when it was completely covered it would get more irritated. Ours was in for three weeks and we had no problems with that afterward. We did pass the catheter morning and night for a few months afterward to ensure it healed properly. • About two weeks -- would have preferred longer to possibly avoid closure issues. • Two weeks. Then we used the plug for several months, as it did the same thing as leaving a catheter in for a longer period without the hassle of having a tube hanging around. • 2 weeks. That was ok, but from what I gather, most people then need a stopper for a longer period of time. My child needed a stopper (ACE Plug) for a few months. • Not long enough. Yes leave it in place for several months. It is so scary when it starts to get blocked. • Supposed to be at least 2 weeks. Due to scheduling issues, we had to have the tube removed 10 days later. I would say 3 weeks might have been better. Still, I recommend having a plug on hand. • No initial catheter. Had a Chait placed in the channel during the ACE surgery. • My child’s doctor kept the Malone and Mitrofanoff initial catheters in place for 7 weeks. That's typically what he does and for us, that was great. The area was completely healed and we have had no problems. • 3 weeks - really just until we were able to get back there - looks perfect and works perfectly! • I believe it was four to six weeks. No. • 4 weeks, Nope 16
What other tips/tricks have you found that you would pass on? • One thing I thought to share that the Drs have highly stressed to us is to get your rectal enemas working perfectly with no accidents before you ever consider the Malone. The Malone will not work better that the rectal enemas, it is just a different way of administering them. • Take the foley catheter out as soon as the enema is finished running in. Doing so will ensure that there is no water/stool left near the stoma after the child gets off the potty. Otherwise, you may experience a small amount of leaking later in the day. I've also found that if you do experience leaking not related to the foley catheter being left in too long, it could be an indicator that an accident might occur soon. In my child’s case, it is usually something that he ate that is going to run through him too fast. He's hypermotile, and it will show up in his Malone first a few hours before he has an accident. It helps to be prepared. • Use a soft comfortable toilet seat as it is a long time to sit on the toilet. • Don't be discouraged if it's not perfect at first. It takes time. Probably stick to your original recipe for a good chunk of time unless the child is becoming backed up. Tolerate accidents as the body adjusts to the new system. Let the child be an active participant in daily flush. • There are so many things it’s hard to know where to start. Flushes, timing. I guess one of the things that makes a really big difference to being able to predict potential blockages before they happen is collecting the output (we used a plastic ice cream container in the toilet) . What it looks like (before it hits the water because once it does, you can’t tell) in terms of texture, colour, quantity tells you exactly what’s going on and where you are heading. • Remember that rectally, you had to keep the solution in place for 8-10 minutes or so, prior to deflating the balloon/removing the rectal cone and sitting on the potty. This is the same thing. If the solution doesn't stay in the colon for at least that amount of time, and for us longer, the colon doesn't get the irritation it needs to clean out. If you let the solution go in too quickly, it just pours out the other end without cleaning. • I was one of those people who didn't want a TV in our bedroom. BUT, we have one now, as the bathroom our child uses to do his 17
Page 1 and 2: Information for Malone/ MACE/ Appen
Page 3 and 4: What is the best thing about having
Page 5 and 6: • It's given my child his dignity
Page 7 and 8: What problems did you encounter and
Page 9 and 10: • We use latex free bandaids, but
Page 11 and 12: fighting us. We also started using
Page 13 and 14: glycerin, the first week or so, and
Page 15: How long did it take to establish a
Page 19 and 20: Catheter tricks/tips: • Once the
Page 21 and 22: from surgery. He's not the only kid

Information for Malone/ MACE/ Appendicostomy - Disabled Living

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