Here's a little story about my experience with stomal surgery, with exaggerations and elaborations courtesy of an overactive imagination. Note that the following, story should not be taken as (completely) gospel, let alone fact. Everyone has a unique story and not everyone's body reacts the same. But maybe it will allay some fears... and introduce others.
It all began back in early 1998 <insert tacky flashback sequence>. I had been suffering with recurring and recalcitrant perianal abscesses and fistulae. The colorectal surgeons had been trying to keep the cavities draining freely by inserting "setons" (loops of surgical thread). This form of treatment was enjoyed and celebrated by the whole team of surgeons, interns and students, who poked and prodded with the splashing of "oohs" and "aahs". The teams were especially entertained when after one particular session in theatre; some sick sadist had used tape instead of a "T-Bind" to hold the combine dressing in place. My hairy butt did not appreciate the joke.
Despite being a new and interesting procedure for colorectal surgeons, the seton treatment didn't do anything for me. Things were getting worse. The surgeons admitted that they were stumped, so I packed up my bat and ball and went off to find someone else to talk to.
After much seeking, I found an ancient Chinese herbalist, who pottered around asking me to snatch a pebble from his hand. This wizened old man brewed me up the foulest smelling concoction he could find and instructed me to drink one third and sit in the remainder. This "tea" was made from the offal of a dragon from the Ming dynasty and the obligatory bamboo shavings, and tasted worse than Dilmah. I stuck at it for two weeks. It didn't work but I would have been kicking myself if I hadn't at least given it a go.
I was in a lot of pain, particularly in the mornings and had been off work for over six months. As anyone who has been on long-term sick leave can testify, this is not easy, and presents a number of issues. Depression, frustration, anxiety and anger are just some of the problems, as well as mental dullness and memory loss (yes folks, it's not just you, memory loss is quite common amongst the chronically ill). It helped to try to establish some sort of routine, to keep my mind off things. I had a daily routine of being depressed, frustrated, anxious and angry.
One of the most difficult issues for me was an increasing feeling of financial insecurity. This sparks off a number of other issues, such as a feeling of failure as a provider, low self-esteem and enormous pressure on other family members. With being off work for so long I was anxious about whether the job will still be there when I return. I was even questioning whether I would ever be fit enough to return to work. Even if I did get back to work how long would it last? When the revolution comes and it was time to assess people's productivity, I would not be very high on their list. Luckily, my employer was very supportive, and a large enough company to absorb the cost and develop a "back to work" plan to ease me back into the office. I also think it helped that I kept in regular contact with my boss keeping him updated on my progress and asking how he was going in the footy tipping.
After six months of being off work, eight months of progressively worsening infections and a new litter of colorectal surgeons, I was starting to get a little fed up. This was beginning to become a real pain in the posterior.
The advice from the senior surgeons was that I would require a permanent colostomy and full proctectomy. I had tried a number of lesser treatments and various pharmaceutical cocktails, to try to avoid "stomying" my "colo", but now it was time to make a decision: either to continue to put up with the perianal infections and survive on painkillers, or to have the surgery to give the area a rest and see if that helped. I was particularly anxious about having a proctectomy due to the very delicate apparatus down there and I had heard that there is about a 10% risk of impotence after such an operation.
However, the new surgeon presented some other options. He was relatively young and not so set in his ways and was willing to take things one-step at a time. He advised first trying a temporary colostomy and see if that helped and then to try a "rectal advancement" and see if that helped. This sounded much better! So I bit the bullet and booked in for surgery.
Despite having plenty of warnings of this surgery, doing plenty of research and having plenty of time to get used to the idea, I was still very anxious. I would find myself thinking about it constantly. I borrowed a few "Dealing with Worry" books from the library and while they were all very nice and have lots of good ideas, I was still worried. I guess this was one of those situations where no matter how much you sweat over it, the bottom line is you'll just have to accept it. The future was a big unknown and I would just have to trust in my own ability to adapt.
Finally, after an agonizing wait, I went in to hospital to have the surgery. Now, I was a "veteran" of 3 bowel-resections, so I knew pretty much what to expect. But for those that have not had surgery before, I can understand that it can be more than a little daunting. So here's a little insight for the uninitiated. Don't be put off by the gory details - remember that it is only a relatively short period in your life.
Preparation:
I had a bad experience once with the Draino. Since then I have learnt to drink some cordial (or other salt-replacement fluid) while taking the stuff. And another tip: don't draw smiley faces on the stoma site markings ... the rest of your body is fair game, though. And make sure that they have one of those handles above your hospital bed so that you can pull yourself up when your tummy muscles aren't working.
Day 1. I was given a PCA (Patient Controlled Analgesic) to administer morphine to control the pain. I chose PCA mainly so that I could get mobile as quickly as possible. That is my secret to an early recovery: Get moving as soon as you are able (under supervision, of course - you are just "testing the boundaries" and don't want to overdo it). There was general soreness around the abdomen. It is pretty hard to do anything, so lay back and enjoy the sponge baths and general pampering. Being bedridden, I needed a catheter to empty my bladder, and warfarin injections to prevent unwanted clotting. DON'T SNEEZE! Coughing, laughing and sneezing hurts. At first, the cough is pitiful (like the sound of a cockroach sneezing, magnified 50 million times), but it gets stronger over time. Try not to laugh and ban all joke-telling visitors for a few days. Sneezing is nasty. It can take you unaware and be very explosive. Try violently pushing your nose into your face. It doesn't help, but it can offer the nursing staff a few laughs. With all of these, fold a pillow in half, and hold it against your tummy. It might sound strange, but it does help.
Day 2. I managed to stand for a few minutes. It was enough to convince the staff that I no longer needed the catheter and to stop the Warfarin injections. I was glad. It happened only once but I had a bad experience after having a catheter. I don't know how those razor blades got in there! But this time, the nursing staff gave me something found only in the mountains of Europe to reduce the acidity of the urine and there were no problems.
Day 3. I was not only standing but I walked, albeit like the Hunchback of Notre Dame. I had one hand on my tummy and found it nice to have the other hand on my lower back. To mess with my mind I dressed in my street clothes, trying to fool my brain. It worked.
Day 4. Walking a bit more. My lower back was hurting a fair bit. Applying heat packs (e.g. wheat) helped a lot. The stoma had started to roar into action and I was disconnected from the IV. It still hurt to cough and sneeze but I managed to develop a sinister laugh that wasn't too painful - so I called the in joke-telling brigade and invited them to do their worst.
Day 5. Now I was doing laps of the ward and getting to know my fellow inmates. I don't know whether this was normal for a colostomy but it hurt whenever the stoma started to work. So I was still taking a regular dose of codeine.
Day 6. Things just kept on improving. Walking, sneezing, and stoma-ing were all getting a lot easier. There was some redness around the staples (yes, I had staples instead of stitches) due to them tugging against my clothes.
Day 7. I proved to the Stomal Therapy Nurse that I was a Master of the Poo Pouch and was sent home. A day later I received a big basket of goodies from the suppliers. And this is how I started to get my life back again.
I went back to the doctor's again about 3 days later and got the staples removed. Two out of the twenty hurt a bit when they were removed. But it felt so much better afterwards! The pain had gone apart from the expected tenderness after major abdominal surgery. Even that settled down over the next 6 weeks but until then no lifting, and no operating heavy machinery! That includes cars. They are extremely hard to lift. Hernias come easily to those whose tummy muscles have been weakened. I told myself to be patient and to take things slowly. It wasn't long before I was back mountain climbing, parachuting and wrestling crocodiles.
Of course, with such a change to a primary function of one's life, there was a period of adjustment. I remember the first time I saw the stoma, it was pretty off-putting. It looked like a mound of squashed raspberries. The Stomal Therapy Nurse reassured me that it was still fresh and swollen but that it would settle down. And sure enough, it has changed. It is now more like a pink little brain. And the smell! It was stronger than I expected. Again, the Stomal Therapy Nurse came to the rescue with these magic drops - I was sceptical, but they actually work! However, I still put the exhaust fan on in the bathroom.
It was an experience, too, having a shower and watching the stoma after getting warmed up, in action. Bed was another weird experience. Try to imagine going to bed with a beach ball! Actually, it's not that bad. But it did take a few weeks before I stopped cringing at the thought of being touched. A month later, my wife told me that she doesn't even realize that it's there. It's not an issue.
I had been warned to expect "the usual teething problems". Nobody actually explained what problems to expect so I imagined all sorts of catastrophes and faeces-filled moats, but I didn't end up having any major problems. Nothing unmanageable anyway. The colostomy output is still erratic and often very loose. So loose it clogs up or even leaks out of the bags filter. Bandaids didn't help. I called the supplier's hotline (they are great and are more than willing to help with advice or to send freebie samples). I decided to change to a non-filtered bag until things firm up. I am still waiting for things to firm up.
While I was still tender after the operation, I chose to use a two-piece system with a "floating flange" (one that I could get my fingers underneath so that I wasn't pressing so hard on my tummy). The suppliers hadn't heard of this happening before but I had a bit of trouble with the flange splitting when it should have been floating. So I changed to a non floating two-piece.
The only other little problem was with noise. The stoma has a malicious mind and will always wait until the quietest, most inconvenient moment to start trumpeting. My only advice is to maintain a sense of humour. It may help to give your stoma a name. Mine is called "Pete", after a good friend of mine ...
'Ave a Good One!
Reprinted from the "Thoughts of YOU" membership folder. Most stories were written from the early to mid 1990s.