This week I met with a colorectal surgeon. He has been brought in to consult on the issue of having surgery.
This entire process has been complex, long, tedious, and pretty terrifying.
Having a hysterectomy or oophorectomy is no small decision. There are so many factors, so many risks, and little knowledge of whether or not it will even improve my pain or nausea.
Unfortunately, it has come to the point where I have no more options. My team of doctors, my family, and I have been considering and discussing this particular surgery for the last nine years, and especially seriously within the last year.
So what has to be considered?
- Well, first off, there is NO guarantee that the surgery will actually help the chronic pain or even the nausea.
- There is no way of knowing if there is extensive scar tissue or where the endometriosis is (if there is, in fact, severe endometriosis, which cannot be confirmed because an exploratory laparoscopy is far too risky).
- With Hereditary Angioedema, I am at risk for intestinal, pelvic, laryngeal, or any other kind of potentially fatal swelling, simply from the trauma of surgery.
- I am allergic to the vast majority of antibiotics, and the three broad-spectrum antibiotics that I CAN take are already taken on a daily, chronic, and permanent basis. So if I end up with any kind of infection, there may not be many choices of antibiotics that could be safely administered. They may have to choose between a severe allergic reaction of hives, or risk an infection spreading.
- I am already taking certain pain medication that can reduce the effectiveness of post-surgery pain management and EVEN the anesthetic itself.
- Due to my two previous abdominal surgeries, there is no way of knowing beforehand EXACTLY where all of my organs are actually situated in my abdominal cavity. This will make it extremely difficult to even TRY to perform the surgery by laparoscopy. It may mean completely opening me up - which is normally much more dangerous (in general) and requires more recuperation time. Open surgery would likely be the safer route in my particular situation (which sounds BONKERS).
- There is a risk of injury to the bowel. This risk is a normal risk for all patients, but since I have a J-Pouch, a bowel injury could result in J-Pouch failure. This could lead to a permanent ostomy. (If a bowel injury were to occur higher up, it might be possible to remove that section of bowel and then reconnect it then and there or at a future date after a temporary ostomy.
- This surgery could make my chronic pelvic pain even worse.
- The surgery is so complicated that there needs to be an entire team of specialists and surgeons present in the operating room or a least at the hospital in case anything goes awry.
- Every single doctor who has me as a patient is nervous to perform this surgery.
- If I DO, in fact, suffer from a primary immunodeficiency (which is currently being investigated), the ability of my body to properly fight off infection or fully recuperate is diminished.
- There is also the obvious risk of severe complications that could result in stroke, coma, blood loss, even death. (These are all standard risks of any procedure.)
Yes - it is daunting.
Yes - it is terrifying.
So why proceed?
The simple answer is Quality of Life.
The particular hormonal changes that occur because of these organs make ALL of my other illnesses flare up. HAE intestinal swelling, mild pancreatitis, Crohn's or Pouchitis flares, arthritis flares, migraines, psoriasis, and several more, are substantially affected by hormones. In the past, this has forced me to be bedridden for nearly three weeks out of every month, along with fairly regular trips to the Emergency Room.
The medication that I have been on for three and a half years is not a permanent solution. It is not even intended on being a long-term solution, and is actually recommended to be used for LESS than a six month time frame. It has, however, greatly reduced the amount of trips to the hospital by shutting down the organs responsible for my hormones. It has already been failing as of December of 2014. This medication was my last resort before surgical intervention.
It has now been agreed upon that this surgery is absolutely necessary.
Knowing full-well that my overall pelvic pain will not be reduced much, if at all, and that the overall nausea may also not improve, there is still a possibility that it will at least have a positive outcome regarding my quality of life.
It would take away MUCH of the unpredictability of flares. Without those drastic changes in hormones, which are uncontrollable and unpredictable in my case, it would mean less frequent visits to the hospital at unexpected times. It means that I could finally uncover a pattern and learn how to avoid those severe HAE attacks. It could mean less anxiety, less medication, no more ovarian cysts, possible pain reduction, possible nausea reduction, fewer migraines...
The most important part of having surgery is knowing 100% that my doctors and I have tried EVERY POSSIBLE THERAPY.
If nothing improves, or even if some symptoms get worse, then at least I am not left wondering if I COULD feel better. At least I would know what my long-term 'normal' will be in reference to my pelvic pain. This is truly a last-ditch effort to improve my health in one small way.
My biggest fear (apart from the severe and possibly fatal risks of surgery) would be that I could be left with a permanent ostomy if the Pouch is injured.
However, this surgeon reminded me that Pouch failure is common later in life in those with cases like mine; I do not respond to the common medications, it took years and years and years to get the Pouch partially controlled, and the Reconnection and J-Pouch surgery was performed at such a young age, that I am essentially on the road to having a permanent ostomy at some point anyways.
This surgery is one of THE most challenging decisions that I have ever had to make.
I am absolutely terrified.
But if there is a chance - even a slight chance - that SOMETHING can be improved because of surgical intervention, I need to take that chance.
I am out of options. There is nothing more that my specialists can do. There is nothing more that we can do to decrease the pain and nausea. I am already taking the maximum amount of anti-nausea medications (the same doses that Cancer patients receive while they are battling the horrific disease with chemotherapy).
So - the plan is to move forward with surgery.
Maybe it will go SO smoothly that all of this preparation and worry will wind up seeming unnecessary... Perhaps this will encourage most of my inflammatory illnesses to go into remission....
And maybe, just MAYBE, once I recover fully (probably 10-12 months after), maybe I will be able to have a shower without vomiting afterwards.
Maybe this is exactly what needs to be done to truly turn my life around when it comes to my health.
Crossing my fingers and praying that this is the right decision.