The missing piece appears
Okay. Had the appointment with the specialist today.
Being more prepared than previous appointments; having done some general research on therapies and options as well as being aware of some of the possibilities, I was more confident than normal. A bit more assertive.
In the end, I think this was for the best. It helped (or forced?) him to be a bit more direct and explanatory of the situation as it's unfolded. The problem isn't so much the fistula. That had/has been relatively stable for (gleep!) over three years. What is of more concern is the section of intestine near it, where my Crohn's is active. It's heavily strictured. This translates to constriction, and potentially obstruction.
Once I had that observation, the rest begins to fall more into place. The constriction leads to a build up of fluid and gas (especially gas) that dilates the segment just before it. If the gas builds enough, it can cause loops to pressure against other sections of the gut which can present as acid, indigestion and other gastric discomfort. It also intensifies the likelihood of the regular set of Crohn's symptoms.
The strictures are essentially fibrous tissue built up slowly by the continual damage to the intestine wall that Crohn's is. Not strictly accurate, but effectively layer upon layer of scar tissue. It's not something that goes away on its own. Pharamceutical therapy does not do much for it either; there are therapies for dealing with fistulizing Crohn's, but not with the strictures.
Once it reaches a certain point, it needs to be dealt with surgically. There appear (to my "research") to be four ways to approach this:
1. Hydrostatic balloon dilation. This is pretty much what it sounds like. A balloon is inserted into the strictured area and filled with fluid to open the constricted region (then the balloon is removed). It can apparently be done endoscopically, which means no cutting. I wouldn't be eligible for this as this technique is only for short sections of constriction and mine is apparently on the order of 20cm.
2. Insertion of a wallstent. This is similar, but much rarer and is often considered temporary to allow patients to gain strength prior to surgery, but there are cases of permanent insertion. Similar to the balloon dilation, the insertion is performed endoscopically, but consists of a weaved metal tube segment that is sited then expanded to the required size to force the constriction open. Again, this is only for very short segments of constriction and doesn't apply to me.
3. Strictureplasty. This is the first of the properly surgical procedure. The strictured section is cut lengthwise, and the incision is stitched up crosswise to the way it was initially, giving a shorter but now wider segment of bowel. This can be done multiple places in one operation, so it can be used if there is a section of a bit longer stricturing. This technique is relatively new but seems to work well enough. It doesn't remove any bowel and thus healing may be a bit quicker and thorough.
4. Resection. This is the traditional image of bowel surgery. A segment of the bowel (in my case from the terminal ileum) is removed and the two ends reattached. In my case, the terminal ileum is involved, so a small section of the cecum (first part of the large intestine) would probably also be removed as it's involved in the same collection of blood vessels, and is often also involved in the damage of Crohn's. At the same time, the fistula would be detached (as the originating point would be part of the removed bowel) and if necessary a small alteration to the sigmoid (the other end of the fistula) may be done as well. My large intestine seems free of Crohns. Some inflamation near the fistula exit, and some right near the ileocecal valve. This means I'm not going to end up with a stoma, either temporarily or permanently. No bag!
It boils down to #3 or #4 for me. Unless the surgeon looks at the case and says I'm not a good candidate for the surgery, either in that it's not bad enough, or whatever other reason. I think it's going to be resection, as 20cm is a rather long segment to strictureplasty, even if done in smaller bits.
Now that I've been involved, and have had the additional information presented and I've understood it, I can see some of the potential wisdom in doing the surgery now. The stricturing is not going to get better on its own. Drugs won't improve it. There don't appear to be many/any experimental therapies for it either. I am currently in otherwise decent health. Normal bodyweight, a bit of muscle and properly nourished. All of which make recovery easier and decrease the chances of complication and recurrence.
Even so it's still a depressing thought. And scary.
Next steps: a colonoscopy in the next couple of weeks (last one was in 2005), to identify any change in the large intestine, especially around the ileocecum valve and the fistula. Then a proper consult with the surgeon to go over the case in detail and decide how to proceed (though it seems reasonably clear, the devil's in the details).
Then I'd go under the knife... not sure when. At a guess, probably in the second half of October. I'd been in ICU a couple days, then remain in hospital for up to a week after that. Then a few weeks of home recuperation before being able to return to work. Physical activities are debatable, but I should be pretty much healed up by early 2009, and should be reasonably normal by Gallifrey in February.
With luck, this will clear up the symptoms and a light maintenance regimen can hold off any further recurrence indefinitely. More realistically... as I understand it, there's a 50% recurrence rate within 10 years, and 50% of those (so 1 in 4) require further surgery. Since I've gone almost 18 years since first diagnosis before my first surgery, perhaps I'm one of the "lucky" ones.
Quite a few things I need to put in order before the day (I have to assume it's going to happen even though it's not 100%).
Doesn't help that my mental state is just a bit fucked up now.
Being more prepared than previous appointments; having done some general research on therapies and options as well as being aware of some of the possibilities, I was more confident than normal. A bit more assertive.
In the end, I think this was for the best. It helped (or forced?) him to be a bit more direct and explanatory of the situation as it's unfolded. The problem isn't so much the fistula. That had/has been relatively stable for (gleep!) over three years. What is of more concern is the section of intestine near it, where my Crohn's is active. It's heavily strictured. This translates to constriction, and potentially obstruction.
Once I had that observation, the rest begins to fall more into place. The constriction leads to a build up of fluid and gas (especially gas) that dilates the segment just before it. If the gas builds enough, it can cause loops to pressure against other sections of the gut which can present as acid, indigestion and other gastric discomfort. It also intensifies the likelihood of the regular set of Crohn's symptoms.
The strictures are essentially fibrous tissue built up slowly by the continual damage to the intestine wall that Crohn's is. Not strictly accurate, but effectively layer upon layer of scar tissue. It's not something that goes away on its own. Pharamceutical therapy does not do much for it either; there are therapies for dealing with fistulizing Crohn's, but not with the strictures.
Once it reaches a certain point, it needs to be dealt with surgically. There appear (to my "research") to be four ways to approach this:
1. Hydrostatic balloon dilation. This is pretty much what it sounds like. A balloon is inserted into the strictured area and filled with fluid to open the constricted region (then the balloon is removed). It can apparently be done endoscopically, which means no cutting. I wouldn't be eligible for this as this technique is only for short sections of constriction and mine is apparently on the order of 20cm.
2. Insertion of a wallstent. This is similar, but much rarer and is often considered temporary to allow patients to gain strength prior to surgery, but there are cases of permanent insertion. Similar to the balloon dilation, the insertion is performed endoscopically, but consists of a weaved metal tube segment that is sited then expanded to the required size to force the constriction open. Again, this is only for very short segments of constriction and doesn't apply to me.
3. Strictureplasty. This is the first of the properly surgical procedure. The strictured section is cut lengthwise, and the incision is stitched up crosswise to the way it was initially, giving a shorter but now wider segment of bowel. This can be done multiple places in one operation, so it can be used if there is a section of a bit longer stricturing. This technique is relatively new but seems to work well enough. It doesn't remove any bowel and thus healing may be a bit quicker and thorough.
4. Resection. This is the traditional image of bowel surgery. A segment of the bowel (in my case from the terminal ileum) is removed and the two ends reattached. In my case, the terminal ileum is involved, so a small section of the cecum (first part of the large intestine) would probably also be removed as it's involved in the same collection of blood vessels, and is often also involved in the damage of Crohn's. At the same time, the fistula would be detached (as the originating point would be part of the removed bowel) and if necessary a small alteration to the sigmoid (the other end of the fistula) may be done as well. My large intestine seems free of Crohns. Some inflamation near the fistula exit, and some right near the ileocecal valve. This means I'm not going to end up with a stoma, either temporarily or permanently. No bag!
It boils down to #3 or #4 for me. Unless the surgeon looks at the case and says I'm not a good candidate for the surgery, either in that it's not bad enough, or whatever other reason. I think it's going to be resection, as 20cm is a rather long segment to strictureplasty, even if done in smaller bits.
Now that I've been involved, and have had the additional information presented and I've understood it, I can see some of the potential wisdom in doing the surgery now. The stricturing is not going to get better on its own. Drugs won't improve it. There don't appear to be many/any experimental therapies for it either. I am currently in otherwise decent health. Normal bodyweight, a bit of muscle and properly nourished. All of which make recovery easier and decrease the chances of complication and recurrence.
Even so it's still a depressing thought. And scary.
Next steps: a colonoscopy in the next couple of weeks (last one was in 2005), to identify any change in the large intestine, especially around the ileocecum valve and the fistula. Then a proper consult with the surgeon to go over the case in detail and decide how to proceed (though it seems reasonably clear, the devil's in the details).
Then I'd go under the knife... not sure when. At a guess, probably in the second half of October. I'd been in ICU a couple days, then remain in hospital for up to a week after that. Then a few weeks of home recuperation before being able to return to work. Physical activities are debatable, but I should be pretty much healed up by early 2009, and should be reasonably normal by Gallifrey in February.
With luck, this will clear up the symptoms and a light maintenance regimen can hold off any further recurrence indefinitely. More realistically... as I understand it, there's a 50% recurrence rate within 10 years, and 50% of those (so 1 in 4) require further surgery. Since I've gone almost 18 years since first diagnosis before my first surgery, perhaps I'm one of the "lucky" ones.
Quite a few things I need to put in order before the day (I have to assume it's going to happen even though it's not 100%).
Doesn't help that my mental state is just a bit fucked up now.