Information for Malone/ MACE/ Appendicostomy - Disabled Living

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Granulation: • Granulation often looks like and is confused with a small prolapsed of intestinal tissue. You hear it described as looking like cauliflower on the net but I have never seen it look like that. All the cases of granulation that I’ve seen personally look like a smooth bulge of red intestinal tissue poking out. It’s not though so don’t panic. Kenalog is great for getting rid of it if you get it on quickly enough. Blob it on, don’t rub it in. • We do sometimes have a problem with granulation tissue which is easily fixed with silver nitrate. We also keep gauze around the tube so it doesn't cause to much granulation tissue. His tube is always taped down so it doesn't catch and so he doesn't touch it. Skin Irritation: • Using 3M No-sting Barrier Wipes. • Bepanthan, Vitamin E or other such barrier/diaper (Nappy) cream. • Rotate band aids, gauze with tape. • White paper tape to cover the stoma during the day - it is not harsh on the skin, and it protects both the stoma and surrounding skin from irritation brought on by clothing or during play. • I did use a steroid cream, but this caused the skin to thin. Find prevention using the Allevyn Thin plasters is much better than any cure. • Initial healing is tricky too. We avoided dressings, which just hold the acid ‘tummy gook’ against the skin. Air time was best, with frequent cleaning (warm water and a little tea tree oil) and bepanthen nappy rash crème to protect the surrounding skin. • We don't have any skin irritation problems, but we keep the area clean and put mederma gel on the scaring every day. • My child kind of lives all the time with some permanent redness around his navel. I know that is due to the fact that he keeps the plug in 24 hrs a day. BUT, that's how it needs to be. One thing that helps a little is we alternate where we place the tape (durable clear is what we use) over the plug, to give different parts breathing room. • Once in a while the clothes rub on either the Malone or Mitrofanoff and that makes the area sore. We just tape some gauze over the area and that works great. We don't want to use a bandaid since that might keep the opening overly moist. 8
• We use latex free bandaids, but had to find the right ones. Not all latex free are the same. • We found a great tape—Mefix, and got insurance to cover it. It’s rather expensive. • Sometimes the feeling tighter is actually some irritation or scab at the malone site. We usually apply a warm wash cloth for 10 minutes or so prior to inserting catheter for the enema. We are also using a little betamethasone cream at night to the site to reduce the inflammation. • If a scab forms, we just use a warm wash cloth to remove it and the tube goes right in. Flow Rate: • I open the gravity bag to its fullest capacity, so the flow is much faster than 10 minutes - I'd say the whole bag (we're at 500 ccs of saline + 25 of the glycerine) runs into him in less than 5 minutes. I feel like the days when I walk away & the gravity bag is "stuck" - for some reason not draining - and the total input time is longer, like 15 or 20 minutes, that he's more likely to leak. The stool will still get removed; but he will have water leak into under an hour (or two hours or even three hours) later. • I learned the long and hard way is to slow down the flow. Now that we have done that, it works so efficiently. When I was shown how to flush through the Malone, they showed me to open the kangeroo bag completely and let the solution flush in. This would mean that all the solution would be in within 5-8 min. We tried everything under the sun to keep him accident free and finally when we slowed the flow down, we have success. I have the kangeroo bags with the slider ball so you can control the flow. I let it go in over 20 min and in total my child sits for 50 min on the potty and we are done and accident free. It took me almost a year to work this out. • We have experimented with how fast the solution is administered and have found that a very slow flow (we use syringes) results in a better washout for my child. If the solution goes in quickly he often gets a hard ball of poo plugging his anus which requires manual removal and is uncomfortable for him. We have also found that slow flow seems to reduce the likeliness of soiling in the hour following a washout. • Sometimes if it goes in too fast and comes out too fast the solution is cutting around the edges of blockages and leaving the 9
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: What problems did you encounter and
Page 11 and 12: fighting us. We also started using
Page 13 and 14: glycerin, the first week or so, and
Page 15 and 16: How long did it take to establish a
Page 17 and 18: What other tips/tricks have you fou
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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