Saturday, March 2, 2013


Here's Rob with his head covered so I can change his colostomy. If he's not blind folded he lifts his head involuntarily and ends up curled up in a ball making it impossible for me to get to the colostomy. Rob's had a colostomy since 2000. At first no surgeon would give him a colostomy despite his bowels not working correctly even with suppositories. He was told he could wear nappies.
A year later a surgeon agreed to the colostomy only after I had burnt out trying to care for Rob with our lives dictated and controlled by his lack of bowel motions. The colostomy has been one of the best things ever to happen to Rob and I. Only recently a product seller of colostomy gear informed us that it's quite common for a severely effected cerebral palsy sufferer to have a colostomy to make caring and cleaning easier and more hygienic. We should not have had to fight for such an operation that was only performed after I had collapsed trying to care for him and coming dangerously close to him being unnecessarily institutionalised.
There's no question that the colostomy has given Rob and I much freedom and dignity. No one likes sitting in his or her excrement so to be told he could sit in nappies was shameful. Rob was old enough to make his own informed decision regarding the procedure that we'll be ever grateful to the surgeon for performing.

Having left a wet warm flannel over the stoma for a small while to soften any waste matter and gum from the wafer I gently wipe away any mess with a damp flannel.
Close up of the stoma and surrounding skin. Note that despite poo having been sitting on his skin between it and the wafer for two days his skin is not burnt. I've deliberately left him with the poo/skin contact to illustrate that there's no need to panic - in Rob's case - if he does not immediately have a wafer change if it is compromised. But when he has watery stools - diarrhea (dx) - he must be changed if it has undermined the wafer or the wasted does burn his skin.

Rob always bleeds when cleaned. But nothing to worry about. The colon has very small and fragile blood vessels that are easily damaged. And due to the size of the vessels they quickly clog with blood platelets.

This was taken some minutes after the cleaning and a careful dabbing away of excess clotted blood showing how soon any bleeding stops.

I always ice the area with each colostomy change whether there's inflammation, rash, sores or clear skin. I keep a large cube of ice in the freezer for the sole purpose of icing the stoma. It's kept in several plastic bags for hygiene reasons but applied directly to the skin out of the bags so I can rub it gently over the skin in a slow circular motion so as not to cause any friction and ice burn. There will be a slight bleeding again that pretty much stops immediately. I pat dry the area with cotton flannel. Ice kills any bacteria on and/or just under the skin. Speeds up the healing process when the body does not have to battle bacteria or inflammation.

Here's the adhesive side of the wafer with the addition of a putty ring called 'Cohesive' as Rob's stoma sinks into his abdomen so is not flush or raised like many a stoma. The putty helps prevent or reduce the incidence of the wafer being undermined by any waste. As Rob can not check his own colostomy and push down the waste I have to check it several times a day.

This is a picture of Rob's two piece set up; the upper side of the wafer and the bag to be attached.

Wafer and putty applied to stoma. After placing it I firmly push down a folded flannel with the palm of my hand to make sure it sticks more firmly.

As Rob's legs prevent him from airing out he has worsening sores between his top leg crease and pubic area. Care must be taken that no waste gets on the sores and if it does a thorough cleaning is given immediately or flesh eating bacteria could cause deadly results. When he's sitting in his wheelchair I always place a thick layer of cloth nappy between the colostomy and his groin area to make sure no waste spills into the creases if the colostomy leaks anytime. Often his upper right leg has pushed the waste under the wafer when it has crushed the bag due to muscle contractures. So the nappies are essential. The contractures compromising the wafers make for a lot of smell, washing and time consuming cleaning, but most of all are a cause of increased infection risk.

Some years ago we discovered by accident the beauties of Fixamol/Hypafix. To help the wafer stick and keep waste from spilling out as quickly when compromised I cut out four strips of Hypafix to adhere to the four edges of the wafer and skin. Generally the wafer only needs changing every four days when Rob is cleaned properly and the two piece applied correctly and checked regularly. Two pieces are great as the bag can either be emptied and reused - which we do most of the time - or disposed of altogether without disturbing the wafer. The less the wafer is removed the kinder it is to Rob's sensitive skin. This is another reason I tend to let the wafer start coming off by itself before changing it. Thus the reason I also needed to know how long his skin could be exposed to firm stools without causing sores or rashes.

Here's a view of a bag now attached to the wafer. I also make a small hole at the very top of the bag to help gas escape. This has been a huge help preventing the bag blowing up with the obvious messy consequences. It also means I don't have to check it so much for gas. But when he's got dx the watery stools can leak out the hole so care must be taken. It was terrible when Rob had no colostomy and he had a bout of dx. Yes, hygiene and cleaning has definitely improved with the colostomy.

Rob first had the colostomy done on the left side in 2000 but not without drama. Firstly, a loop colostomy was performed. When it was shown to be inappropriate a permanent one, as we originally requested, was performed and is the style he has now. The original loop colostomy kept on prolapsing resulting in numerous visits to the accidents and emergency department to have it literally stuffed back into his abdomen. Eventually a surgeon showed me how to stuff it back. He sprinkled sugar on the protruding bowel that shrank it. Then the bowel was carefully teased back into the abdomen. Good thing I was born with a strong stomach and have no trouble handling inners, even with my bare hands.

Some time after the permanent colostomy I noticed a huge lump about the size of a grapefruit under the stoma site and immediately took Rob to the GP. She freaked out. So I took Rob to the hospital where he was diagnosed with a rare desmoid tumor. Five surgeons got together to discuss the case and had him under the knife immediately. The stoma was relocated to the right side.
Though plied with antibiotics he left hospital with an infection at the operation site where the tumor had been. Mesh had been placed where a huge 10x10 cm of abdomen had been cut away. But we all thought the infection would go away with a few more days of antibiotics. Six months later - after I was daily flushing the wound site out with ice salt water and application of ice packs to the wound site - I was getting pretty sick of the infection that some bloody community nurse accused me of causing!!
I insisted on seeing the head surgeon who had performed the surgery in the first place and not the surgeons training under him whom Rob had been seeing as an outpatient. He was furious as no one had told him of the ongoing infection. Rob was immediately admitted and the mesh removed. But something very strange had happened. When Rob was opened up the missing abdomen flesh had regrown so the mesh could be removed and there was now no fear of a hernia bulging from his abdomen. We've fortunately had no real problems with the colostomy ever since.

The only thing I find hard to stomach is the mucus that leaks from Rob's butt occasionally as the anal passage's mucous membrane is still there and still produces mucus. I mention this as many people unfamiliar with colostomies do not realise this can happen depending on the sort of colostomy performed and each individual is different. So when something 'strange' comes out of his bottom concern and alarm bells ring. No need. All's good. And since the mucus resembles snot if feel a little queasy as snot is about the only thing I can not handle well. Blood and guts, vomit and poo fine. But not mucus because it resembles snot.

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