I was doing quite well, until Dec 22nd.
I awoke during night with terrible abdominal pain and nausea. Since the abdomen was not tender (ie it did not hurt to push on it), Ken and I figured it was not an urgent problem. In the morning it had improved, but waxed and waned for the next several days, at times being more severe and at times going away, until Dec 30, I woke up with more severe cramping pain, which this time was tender, but taking one of my pain meds left over from when I had surgery made it go away, we were planning on going to hospital at this time. Ken and I figured that narcotics relax the bowels and take away the spasm. Went to hospital the next morning and the xrays showed abnormal patterns but not specific and clearly not an obstruction, possibly an ileus (which is where the bowel just stops) (an ileus is what happens postoperatively).
I then spent several days (long story) trying to get an appointment with either my surgeon, OR my radiation oncologist. I finally on Friday got an appointment for tomorrow in Eugene.
My symptoms are a crampy abdominal pain about 50% of the time, usually after every time I eat and during the night, I also am quite nauseated at times. I have lost weight.
Oh and I did get in to see my chemo/onc who felt he this was not in his expertise, but to rule out the cancer recurrence did a full CT scan last Thursday and it was normal, WHICH IS GREAT. So we are pretty sure this is not related to the cancer.
So for anyone who has followed this blog along, you will know that my usual "approach" to every new "situation" is to start researching it, finding out the worst possible scenario and panicking .......RIGHT ??
So of course that is what I have done.
There are some very interesting bits to it, so I thought I would include it here.
The most severe thing that could be causing this (next to a cancer recurrence) would be something called radiation enteritis. It is a late effect of radiation to the abdomen or pelvis. It can affect the large OR small bowel.
When it affects the large bowel it causes bleeding from the bowels, and from the small bowel it causes crampy abdominal pain, nausea, vomiting and weight loss.
It is basically a vasculitis (inflammation of blood vessels) of the blood vessels that supply the bowels, leading to ischemia (decreased blood supply like angina of the heart) and eventually leading to scarring, and perforations of the bowel walls, fistulas( which are abnormal openings between the bowels and other things such as the vagina.)
You can live without your large bowel, but you cannot live without your small bowels, and so in more severe cases people have to go to total parenteral nutrition, which is when all of your nutrition is by intervenous. The scariest part is that the mortality rate is worse than for my cancer. HOWEVER......
Other things this could be are multiple adhesions which are scar tissues that form after operations that "fix" the small bowel to certain parts of the abdomen (usually the small bowel is free to go where ever it wants in the abdomen, the large bowel is more fixed in one place).
After a hysterectomy, since the pelvis is empty the small bowel often goes down there and hangs out there. Unfortunately this is also where the radiation was focused. And since the area is fresh from surgery it is ripe for something to attach to it, leading to intermittant partial obstructions of the small bowel and/or complete obstructions eventually.
I was told when I started radiation that I had a 35% chance of a small bowel obstruction.
So I will be seeing the radiation oncologist tomorrow, she said she will likely recommend a gastroenterologist. Ken and I spoke to a gastroenterologist at OHSU the other day who said this sounded like partial small bowel obstruction and suggested a low residue diet. So I have been doing that. It is very hard since we are "all about fibre". Sometimes these things can clear up themselves.
The other cool thing is that I have of course been researching the radiation enteritis, and have read that hyperbaric oxygen chamber treatments were being tried to treat this, with a fairly good success. I guess when I read about it, I thought it was likely just experimental still. However I spoke with someone yesterday who had radiation enteritis who underwent the hyperbaric oxygen chamber treatments last summer and it has improved her problems considerably. So now I am of the thought that whatever we find this to be, there is likely going to be SOME treatment. That is a huge relief to me.
Oh, I guess I should explain..
Hyperbaric oxygen is oxygen at a higher pressure. When you go up to the top of everest, it is hard to breath because the oxygen pressure is so low in the atmosphere that it is harder to oxygenate the tissues. When you go below sea level the oxygen pressure increases, increasing the transfer of oxygen to the tissues. A hyperbaric chamber is like being deep under water.
The effects of hyperbaric treatments are:
1) It increases oxygen concentration in all body tissues even with reduced or blocked blood flow.
2) It stimulated the growth of new blood vessels to locations with reduced circulation, improving blood flow to areas with arterial blockage. (this is the effect that I believe would most help radiation enteritis
3) It causes a rebound arterial dilation after the treatments resulting in and increased blood flow to compromised organs
4) stimulates an adaptive increase in superoxide dismutase (SOD), one of the body's principal, internally produced antioxidants and free radical scavengers; and,
5) aids the treatment of infection by enhancing white blood cell action and potentiating germ-killing antibiotics.
I found this quite interesting.
So I am quite dissapointed that this problem has come up, I had hopes of kissing goodbye to 2009 and to everything associated with it, but I guess not yet. Perhaps it is because I did not stay up until midnite to make sure it was gone for sure :)
I wish everyone a happy New Year and will keep you posted
jankenb @ gmail.com