It is very hard to have a "condition" that 3 doctors have verified that I have, and for all three to say that the only treatment is to follow a low residue diet, when everything I read in the medical literature suggests that the diet does nothing more than cover up the symptoms.
The literature also suggests that this is a progressive disorder that has a mortality rate of as much as 20%. I have really struggled in that my cancer had a mortality rate that was similar. (much higher without chemo and radiation and lower with the chemo and radiation I had)
Radiation enteritis can be acute or chronic, and they are both quite different entities.
Acute radiation enteritis is the diarrhea etc you have during and possibly the first few months after radiation,( I did not have a lot of diarrhea, only the skin problems). Acute radiation enteritis is a self limited disorder that goes away usually by 2-3 months at the most. It is essentially caused by the radiations effect on the mucosa (or the inside walls) of the gastrointestinal tract. Most people who undergo pelvic or abdominal radiation experience some form of this.
These cells that are damaged essentially regrow and heal.
Chronic radiation enteritis usually occurs between 6-18 months after radiation therapy to the abdomen or pelvis. It is much less common, perhaps 5% of those who undergo radiation develop this. Having had surgery, radiation, brachytherapy AND chemo increase your chances of getting it.
It is essentially a vasculitis that causes the blood vessels that supply the bowels to essentially close off. (sort of like what happens when you have a heart attack, when a blood vessel is blocked then all the tissue that it normally supplies with oxygen dies)
The difference here is that these are tiny blood vessels that close off, and so tiny areas "die".
This leads to scarring and the area affected stops functioning.
So what you end up with are multiple scarred areas of the bowels, which eventually can lead to perforations and obstructions. Some people spontaneously resolve, and there is no way to know which will. This can affect the small bowel OR the large bowel, and for me it seems to have affected the small bowel. It would seem that the more serious consequences would occur with the small bowel, since it is such a vital part of the gastrointestinal tract, it is were all of our food and nutrients are absorbed.
I am currently OK as long I do not eat any fiber..... a few times the pains have come even when I did not eat any fiber.
I have reviewed all of the literature and there is one treatment that has been shown to "cure" these radiation injuries: Hyperbaric oxygen therapy. (up to 75% in some studies)
Although there seem to be just as many studies on this therapy as there are on the treatment of my cancer, this treatment is largely ignored by the medical population. This is really disappointing.
I contacted the leading researcher based in Toledo Ohio,( he is a radiation oncologist and hyperbaric specialist). He said I should be treated.
I found out about a hyperbaric doctor in Eugene. ( I have a friend who went through the 8 weeks of treatments up in Portland last summer, she had had 2 years of rectal bleeding symptoms, and she is now 75% better.)
SOOOO I went to see him yesterday. He seemed more informed about radiation enteritis that anyone I have yet spoken to. He has suggested I should do the treatments, and the sooner the better. There are also studies out there that suggest that the sooner the treatments are started the higher the chance of a cure. This totally makes sense as once the damage is done, hard to totally turn it around.
So stuck with the situation of whether to wait and see if this resolves in a couple of years as my gynecologist oncologist suggested it might, and risk that it would not resolve and then having a lower chance of a cure with hyperbaric treatments, or to go ahead with the treatments now.
I have an appointment with the doctor at the hyperbaric unit in 2 weeks. In the meantime I will need to find out if my insurance will cover it, my friends insurance did. The cost of the treatments is about 20,000 dollars. (which is a fraction of what the chemo or the radiation)
The treatments are usually 90 minutes a day 5 days a week for 8 weeks. You basically go down to 2 atmospheres, which is like underwater diving. ( I do not know how deep that is equivalent to) You need to be able to "equalize" your ears, like when you come down in the plane. Apparently 1 person out of 5 develops a temporary myopia (really bad vision), so for awhile I might not be able to drive. This goes away. That is about it as far as side effects go. What a dream compared to chemo and radiation.
So that is essentially where I am at right now, Ken and I are figuring out if and when we will do this, likely soon if we choose this route, and we most likely will.
Bye for now
jankenb @ gmail.com