My sincere apologies to all my blog readers for not posting in the last 18 odd months, things got a bit rough at home and hence time was rather scarce for me and my family. I shall continue my story from where I left off.
After Stephen's colostomy in March 2012, it took another couple of months before his doctors began discussing the timeline for his bone marrow transplant. This was done to give Stephen's perianal wounds and stoma (from the colostomy) sufficient time to heal properly so that they will not pose any risks to the transplant procedure. If all goes well, we should be able to start the transplant by around June 2012.
With lots of care and support, we managed to pull Stephen out of his depressive state and it wasn't long before he regained his appetite and normal physical activity at home. The downside of this was that the more food Stephen ate, the more motion he passed, and this required more frequent bag drains. The stoma bags that we were placing on Stephen also had shorter lifespans too because the adhesives were wearing out faster due of his increased activity (leading to more frequent bag changes). Add this to our daily list of chores and medicine feeds and it was a full day's work everyday for the both of us parents. May 2012 could not have arrived any slower for us, but the thought of giving Stephen his transplant soon kept us going.
The time finally came for the doctors to review Stephen once again whether he was well enough for a bone marrow transplant. Hence all our hopes for a speedy transplant were pinned on just a few routine blood tests and an X-ray.
One good thing about giving Stephen a stoma was that we no longer had to constantly worry about the wounds on his bum. We were practically peeking at his backside every fifteen minutes or so before his colostomy, always worrying that his wounds will get re-infected if we don't ensure that they were clean all the time. His bum has since become virtually fuss free now, and all we have to do is to apply an antibiotic cream on his wounds once or twice a day and that's it.
The drawback however was the work that had to be done to maintain the stoma. Instead of diapers, we now use a stoma bag to collect his stool; and instead of baby wipes, we use disposable gloves, kidney dishes, alcohol wipes, distilled water and gauze or cotton balls to drain his stoma bag. To change his bag, we had to throw in saline water, stoma powder and stoma adhesive paste to the whole mix of things. So we do go through quite a lot of medical consumables nowadays. The stoma bag has to be drained and flushed with water once it is full and the lifespan of each bag is dependent on the adhesive that keeps the stoma bag stuck to the body. On the average, we were draining his stoma bag twice a day and changing it twice a week.
The process of draining or changing the stoma bag is quite delicate and it requires quite a lot of care to prevent Stephen from coming into contact with his own faeces. It is relatively straight forward if we had to do it on a dummy, but performing the task on a restless and crying child was a different matter altogether. As you can imagine, a lot of time and energy is spent to prevent accidental spills and leaks. Here is a picture of the stoma, it's about one inch in diameter:
The most recent hospital stay was the most psychologically challenging for Stephen. Aside from feeling the usual post-surgery pain near his anus, he also had to contend with pain coming from his abdomen. The new stoma hurts like a fresh wound, and the presence of a plastic bag being constantly stuck on his tummy was very uncomfortable for him. It will take time for both the skin around the stoma and the cut near his anus to heal, hence all we can do now is to wait.
The good news was that the stoma functioned very well and Stephen started passing motion from the hole in his tummy soon after his surgery. The bad news was that the latest round of procedures affected Stephen quite badly. We started noticing the changes in Stephen's mood just a few days after his colostomy. He was not at his usual self and was quiet, clingy and easily agitated. He didn't smile much and had poor appetite even after he got discharged from the hospital, preferring to sleep more often than he normally would. Stephen hated the sight, smell and feel of the stoma bag that was stuck to him all day and filled with faeces most of the time. In the first few weeks after his surgery, Stephen became so withdrawn that he didn't play with his toys or showed any interest in food or television.
We knew that Stephen was suffering from some form of depression, but it was perfectly understandable when we considered the pain he had to go through for his perianal fistulas, daily regime of oral drugs, trice weekly injections and now the colostomy. It was easy to forget that he had only just turned 2 years old. To help with his recovery, we cooked his favourite food, tuned in to the funniest cartoons available on cable and tried playing with his toys in front of him to get him interested. The loss of appetite did take quite a toll on Stephen's body and within one month, he lost almost a tenth of his weight. But with lots of love and encouragement, things did turn around for the better from mid-April onwards.
With the colostomy at the back of our minds, we spared no effort to take care of Stephen's wounds after he was discharged from his February 2012 hospital stay. We wanted to avoid a colostomy if possible as we were worried about the risk and the discomfort that it will cause.
Things did look promising for about one month after his last discharge and we were quietly hopeful that we had seen the last of the perianal infections in Stephen, but it was not to be. It was about mid-March 2012 when another old cut became red and painful once again. At this point, it became clear to everyone that delaying the colostomy would only put Stephen at risk of another recurring perianal infection, so we made the decision to proceed with it.
When Stephen was admitted this time, he received two procedures in one surgery, a fistulotomy to remove the infection at his buttocks and a colostomy to divert his stool through a stoma in his abdomen. To our amazement, they found yet another fistula in Stephen and another cut was made near his anus. This was a record for the hospital in terms of number of admissions for infections due to perianal fistulas, so in a way we felt that we did the right thing to give him a colostomy.
Although the injections would lower the risk of a serious infection in Stephen's body, we cannot be certain that his perianal infections would not come back. This was due to one simple reason, Stephen still needed to pass motion every day and it would take many more weeks (if not months) for the cuts on his bum to heal and close up. This meant that his wounds would still come into contact with faeces on a daily basis.
One solution proposed by Stephen's doctors was to give him a colostomy. A colostomy is a surgical procedure whereby a hole is made in the abdomen to reveal the intestine. A section of the intestine is then sliced through and the two open ends of the intestine are then pulled out to the surface of the abdomen and then stitched to the surrounding skin. The opening made by the colostomy is also called a stoma. The stoma will allow faeces produced by the body to be diverted into a bag that is glued to the abdomen over the stoma. The diversion created will allow the wounds on Stephen's bum to heal without coming into contact with his stool.
We did talk about a colostomy with Stephen's doctors on many occasions before (since September 2011), but we were not too keen on it because of the invasiveness of the procedure and the relative risk that it would pose. However after having undergone four rounds of infections at his bum, we were hard pressed to give him a colostomy to stop his vicious cycle of pain.
Stephen's January 2012 hospital stay was a huge disappointment for us. It was the second time that his transplant got postponed by an infection within a year (the previous postponement was in February 2011). Although we had already stopped wound packing and flushing for over a month by then, the procedure was still fresh in our minds. Hence we just went about treating his wound with the best possible care.
However, it was no sooner than 2 weeks after we had checked out of the hospital that we began noticing that one of Stephen's old wound was starting to get red and inflamed at the end of the cut. The redness at the site of the old wound suggests that it was getting re-infected by the frequent contact with faecal matter. It didn't take long for us to meet up with Stephen's surgeon once again and a call was made to bring him in for another surgery in February 2012.
This time round, the surgeon found yet another fistula running almost parallel to his old wound. After the surgery, the doctors approached us and said that continued surgeries on Stephen's bum to resolve his perianal infections may cause him to suffer from incontinence. This is because every time they perform a surgery to remove a perianal fistula, they are inevitably causing some damage to his Sphincter muscle. The Sphincter muscle is primarily responsible for keeping our anus closed; hence losing the use of it would be disastrous.
Stephen's wounds had more or less healed by December 2011 and we were starting to discuss Stephen's transplant again with his doctors. It wasn't long before we were given a slot to begin his transplant around mid-January 2012.
It was sometime around Christmas when we discovered that a small pimple had appeared just next to Stephen's anus. There was a little concern, but we did not think much of it since Stephen was prone to the occasional pimple on his skin due to his hypersensitivity to common bacteria that reside on our skin.
As we started the new year, the pimple refused to go away and it even started discharging pus through the skin. The last thing that we expect was to be informed by Stephen's surgeon that the pimple might be caused by another anal fistula.
Unfortunately, this was indeed the case and so instead of getting his Hickman catheter placed in his body (in preparation for the transplant), he got another fistulotomy in the operating theatre and had to endure another round of pain after that.
The only positive thing that occurred in the third episode was that the fistula was located nearer to the skin surface than the previous fistulas that were found in him. This meant a shallower cut and a shorter recovery period.