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Subject:
IBD essay to share
Date: Tue, 11 Apr 2000
From: Nancy Emerson
Thank you
for asking for our stories and experiences with Crohn's disease.
A greater number of available treatment options would be likely
to result in more people being able to live healthy lives despite
this disease. It is important that we find as many avenues as
possible for making information available.
It was
my experience, starting with the time that I was first diagnosed
with Crohn's (as a 17 year old senior in high school, almost
12 years ago) that my GI doctor had no interest in treatments
other than medication and surgery. General management through
diet, or even remote connections to diet, other then the traditional
low residue approach, were not of interest to him. Throughout
my relationship with him, when I suggested that I thought
I felt better when I ate a certain way, or drank a certain
amount of water, he would dismiss the information. While my
recollection is that some of my ideas did prove to be inaccurate,
they were part of my process of learning how to play an active
role in caring for myself. I was not encouraged in this direction.
After
I was diagnosed I spent just over 3 1/2 years going on and
off prednisone. I took Flagyl a couple of times, briefly,
as well. I then had a resection, which was recommended by
my GI. We did not ask for second opinions. At the time I was
not losing weight, though I was not responding to the prednisone
as I had in the past. No other treatment options were discussed
or explored prior to surgery. I did have an active fistula
which was not healing.
After
the surgery I returned to what I thought was remission. I
was healthy enough to live my life in what I thought was normal
fashion. The disease was inactive enough that I was not prevented
from pursuing activities I wanted to pursue, though I do recall
having increased need for bathrooms far more than is normal
in people without Crohn's. I never was even close to as healthy
as I am now. My doctor wanted me to take Asacol based on one
study he had seen which showed that it 'might increase the
duration of a remission'. I felt that this wasn't strong enough
evidence to support my taking medication longterm. I didn't
take it. I remained in the same state of health for almost
5 years.
When I
got sick again I was more sick than I had ever been before.
I lost weight and had very active digestive symptoms. I did
not wish to return to a cycle of being on and off medication,
and feared that it would just lead to more surgery. I also
beleived there had to be a 'better way,' and I felt certain
that my doctor would be no help in helping me find that way.
So I did not return to him, and as a result got more and more
sick. I tried a naturopath briefly, and she helped, but not
enough and I stopped going.
Then I
did a little internet research. At that point I had been very
sick for about a year, and I had lost about 25 pounds. (I
hadn't been even close to overweight, and didn't have any
weight to lose.) I found the book Breaking the Vicious Cycle
by Elaine Gottschall, ordered it, and started the diet. It
helped immediately. I wasn't able, however, to make myself
follow the diet completely, and while I stopped getting worse,
I also didn't get better. I felt I was doing 'the best I could'
at following the diet. I think I was following it in about
95% of what I ate, and I knew staying at the same level of
health was not acceptable - I was too sick. I got discouraged
and went off the diet after about 4 months. At that point
I was desperate, and I started seeing some doctors. I saw
an allergist who did some tests, which weren't very helpful,
but he did recommened following the Specific Carbohydrate
Diet (SCD), as described in Elaine's book. I saw my family
doctor who was clearly scared by my condition and he insisted
I see a GI. I saw a new GI, who was very skeptical about the
SCD, and who wanted to start running tests. I then saw my
original GI, who told me I was not taking care of myself,
and that I was being entirely unrealistic about thinking that
any diet could help me. I needed medication and tests to determine
how sick I was, and I was clearly not living in reality if
I didn't realise this myself.
I guess
those responses, while very frustrating, caused me to realise
my options. I didn't like what any of my doctors had to say,
but I knew that if I couldn't solve the problem myself I would
have no choice. I also knew that the healthiest I had been
was when I was on the SCD, even if it was only 95%.
I restarted
the SCD, after being off it for 2 months. This time I had
much more resolve, as I knew what the alternatives were going
to be. I followed the diet 100%, with no exceptions, ever,
and I started feeling better within days. I began putting
weight back on, slowly, within weeks, and in less than 6 months
I had regained all the weight I had lost. I've since gained
more, but I feel healthier than I ever have before in my life.
Perhaps I was this healthy in childhood, before I really remember
the details, but I certainly haven't felt this good since
before my diagnosis. The years after surgery didn't even come
close.
I have
been following the SCD for just over 22 months. I still have
occasional mild symptoms, and I'm still gaining health. My
improvement at the beginning was noticeable daily, and it
then slowed to weekly. It is now noticeable from month to
month, but it is still definite forward progress over time.
I look forward to eventually living a life which is completely
free of symptoms of Crohn's disease.
I continue
to see a family doctor, though not the one I saw two years
ago. He does bloodwork, and helps me monitor my B12 and calcium
levels. As a result of surgery I will probably always need
B12 supplementation. Also, as a result of prednisone, I have
reduced bone density. I am no longer anemic, for the first
time since before Crohn's disease, and without supplements.
My current family doctor is supportive, at least in that he
recognizes that 'if it works keep doing it'. My only requirements
from a family doctor are that he be willing to work with me
on monitoring bloodwork, and that if I were to end up in the
hospital with an injury or another ailment he would support
my requirement for special food. I would have family deliver
it to me if need be, but I want to know that, if I need his
support, I will have it.
I do not
see a GI doctor. My GI from early in my illness continued
a near complete lack of interest even after I improved. I
have in my file the letter he wrote to my family doctor claiming
I 'wasn't seeing the forest for the trees' and that he was
extremely worried about my condition as well as the direction
in which I was headed. I returned to see him after I had gained
about 15 pounds and had been on the diet for 2-3 months. He
was not interested. After I thoroughly described my improvement
he reminded me that Crohn's can go into spontaneous remission.
I discussed with him that I was not in remission, as at that
point I still had significant symptoms. The point, for me,
was that I was getting continuously and rapidly better. He
wrote down the title of Elaine's book, but gave me the impression
he did so only because he felt I wouldn't be satisfied otherwise.
I did
experience the relapse Elaine describes at 3 months, and it
wasn't for another 3 months that I regained those backward
steps. Since then I have improved constantly and steadily,
and expect to continue to do so until no more symptoms remain.
At my current rate I would expect to reach this point after
about 2 1/2 years on the SCD. If it takes longer that's okay.
I will be pleased if I can one day eat foods which are currently
not allowed, but if this doesn't happen it's fine. My health
is more important than any specific food I may miss. Even
if I can add some foods back in I expect that my current eating
habits will continue to define my overall habits and patterns.
I can't imagine any diet which varies from SCD dramatically
giving me this level of health.
I owe
Elaine Gottschall my life in the sense that, if I were still
alive without the SCD, I would undoubtedly be unable to live
life in the state of health and wellbeing that I now enjoy.
Gratefully,
Nancy Emerson
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Nancy's Testimonial