Pam's Story: The Ups & Downs of Crohn's Disease

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Pam's Story: The Ups & Downs of Crohn's Disease

IN AUGUST OF 1986 I BEGAN experiencing problems with diarrhea, cramps and fatigue. We were living in Kamloops, B.C. at the time and there had been some trouble with the local water supply so I assumed this, or the flu were the cause. After a few weeks I was really beginning to feel very sick so my GP booked a series of tests which all came back as normal. I managed to convince her that I wasn't fooling and she finally booked a sigmoidoscopy, a camera inserted into your rectum through which the doctor can view your bowel.

That was done in December of 1986 and I remember waiting some time for the results so, impatient and scared, I called the doctor's office. His receptionist told me I had Crohn's Disease and I needed to come in, see the doctor and pick up some Asacol. I was so upset I could hardly make out what she was saying, all I could think of was, I actually had a disease. I had to ask her to repeat what she said and how it was spelled. Then I went next door to my neighbour and cried my eyes out.

The Asacol did absolutely nothing for me; I just kept getting sicker. I can recall sometimes filling the toilet with blood. A sore throat and persistent dry cough, coupled with ulcers in my mouth and bottom end, kept me from eating or sleeping. Antibiotics were prescribed which only made the diarrhea worse.

My GI then left on holidays and I found myself having to explain my situation to a vast array of professional looking people over the next few weeks. My GP would answer my "do you think I need to be in hospital?" with "do you think you need to be?" I remember Christmas morning feeling like something inside me fluttered and died and I asked my husband to take me to emergency. I'd lost 40 pounds (although no one knew this as I'd never been weighed during that time. In fact, the GI told my GP that perhaps I was anorexic) and hadn't absorbed any nutrition in days. I collapsed in Emergency but was not allowed to be admitted until I could name the head of my household. I remember finding that the strangest thing of all.

A few days after being admitted, an incident occurred that would change forever my perception of conventional medicine. A bright young intern waltzed into my room toting a TPN, or Total Parental Nutrition, machine. This thing keeps you alive by tube-feeding you through your heart. He told me I should expect at least two operations in my lifetime, several 'unions' with TPN and possibly 'wedded' to it eventually. He told me I was lucky to be alive, that I had been near death and I shouldn't make any long range plans.

Well, right then I knew I could not live my life from such a negative viewpoint. We've since spent a year travelling in the South Pacific and are now raising two beautiful boys ages 3 and 6. At the time, however, we were alarmed and furious by turns. No special diet, no plan of action...just avoid what didn't agree with me, take my medicine and above all -- don't question the doctor!

You must remember this is my story, how I relate to what happened to me. It is not intended as a judgment on any particular method. The doctors were coming from a place of caring and did the best they could with the tools with which they had to work. But I also suggest you be careful of who you put your faith in, there are less than perfect individuals in every area of health care, conventional and alternative. In my case it just happens that the people who empower me quite often are not conventional medical doctors.

Confusion set in fairly early and has been a constant nuisance. Do you believe your MD? ND? Nutritionist? Acupuncturist? Chiropractor? Your therapist wants you to get a divorce, and your parents and the nurse on the ward whisper advice to you when the doctor isn't looking! I think my GP is very open-minded but even she clings very much to western approaches when things get critical for me. I recognize that both she and my GI just want what's best for me but the fact remains that I probably know more about my condition than they do.

During a recent gallbladder attack all of the conventional types pushed hard to have it removed. I haven't experienced intimidation like that since grade school! I asked for some time and thankfully my ND was able to dissolve the sludge with a cleanse. But you know, neither 'side' could show me any hard evidence to support either view. I really felt for one doctor who was upset at how sick I was and that I wouldn't immediately do what he asked. I've just always had a sense that if I can hang on to my parts long enough somebody will know how to help me. No one seems to know what the other guy is doing, so in the end the only person who can sort it all out is you.

We read everything we could get our hands on about Crohn's disease and diet. I tried macrobiotics but it made my symptoms worse. Then I heard about Elaine Gottschall from a friend and I gave her a call. She sent me rough drafts of her book, Food and the Gut Reaction (now retitled Breaking the Vicious Cycle), this was an absolute rock to which I clung. I felt better right away on the Specific Carbohydrate Diet (SCD) and was finally able to reduce the prednisone. The problem was, after only two years on the diet I felt so good I began to add in foods I missed. It was too soon; I was not totally healed and I started having problems again. I do go right back on it at the first signs of trouble which I believe enables me to recover so quickly from each attack. I knew the diet worked and by sharing my story have helped many people regain their health but it can be a hard diet to stick with.

When we moved to Victoria in 1989 I began seeing a local ND who put me intouch with Health Action Network. I've found them to be a dedicated group of unbelievably caring people who are trying to enlighten us as to our many options in environmental/health care. Over the years they have given my name and number to people who call looking for answers and hope. It is very humbling; it keeps me grounded and appreciative of all the good things in my life. At the same time it helps to keep me on track and accountable to my own search.

Alternative methods of healing in recent months have put me through the most trying year of my life. At times I questioned my commitment to this route and during those times I hung onto prayer. What else could I do? It was either that or let them start carving up sections of my bowel, use stronger drugs or both. It was like peeling an onion and we (because my husband and children are in this too) endured pneumonia, gall 'sludge', vomiting, eye infections, ear aches, open weeping sores, crippling arthritis, rashes, cramps and diarrhea. I explored Neuro Linguistic Programming, Time Line therapy, Iridology, ozone treatments, remedial therapy, colonics (I now own a colema board), marriage counseling (big time) and Pranic healing. I've plowed through PMA books and books on medical politics and healing. How I've paid for all this is a story all in itself as I obviously don't work and my husband's income is average. Part of it is due to people being dedicated and interested in healing to the extent they are willing to wait for payment, trade or waive it all together. All of this has helped in some way, addressing concerns as individual as the titles that describe them. If you have a health challenge I believe you really need to put together your own 'health team' if you're to survive what's ahead of you.

When all this started to come together I began to realize I was worth fixing. With God's help I am finding the confidence I need to find my own way through the maze. I have faced my own mortality and found myself finally unafraid of living.

Health Action Network Society.

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By Pam Bassett

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