My Pre-Diagnosis Days : Living with the Unknown

A friend of mine asked me what symptoms I had that led to my being diagnosed with Crohn's. I think that's a very timely question, and so here I am, writing about the story of how I came to be diagnosed with Inflammatory Bowel Disease, specifically with Crohn's Disease.

As the phrase "inflammatory bowel disease" connotes, the bowels are involved. In the case of Crohn's the entire digestive tract from start to end can be implicated. My symptoms largely involved my colon, and in particular my terminal ileum, where the small intestine meets the colon or large intestine. Deep ulcerations work their way through the mucosal wall, and scarring occurs as part of the cycle of healing and re-inflammation... over time these scarred areas cause obstructions that may need to be surgically removed.

As it is a disease that involves the bowel, unsurprisingly the symptoms revolve around very earthy things... the sort of stuff we don't talk about at the dinner table, but maybe in blogs :) I had watery diarrhoea up to 10 times a day, colic abdominal pain, low grade fever, joint pains, and reactive athritis in my feet.

The diarrhoea first began during my first pregnancy in 1995, and it was thought that perhaps it was a hormonal thing and left untreated, which suited me fine as I never even took a panadol during my pregnancy. After my son was born the diarrhoeas continued, though I had less and I had few other symptoms. I then went on to have another child in 1997, and shortly after my second son was born, my health went downhill rather quickly.

I insisted on nursing him, and I remember that I had 8-10 watery diarrhoeas, and 8-10 feeds per day... in no time at all I was very thin, and quite ill, and ended up in hospital. I stopped nursing and went on some medications, and got a bit better even though I was not properly diagnosed at that time. Unfortunately, I then developed a fistula in 1998, which is a tract/tunnel that develops between the intestine and another organ...and fecal matter gets trapped in there causing infection and swelling etc. In my case it developed perianally and required surgery... my very first surgery which wasn't much fun at all. The hardest thing was sitting in salt baths for months afterwards every time I went to the toilet so that the area wouldn remain clean and uninfected. I remember reading through many novels while soaking... and not leaving home very much at all.

When my maternal grandmother passed away in 2000, I was deeply saddened and quite stressed... and I developed ulcers in my mouth... this in combination with the fistula and the diarrhoea and joint pains led to my being diagnosed with Crohn's as they are typical symptoms of the disease. I was given steroids (prednisone) and since I responded to them that was taken as another sign that what I had was indeed Crohn's.

My inital response was to completely break down and cry... I think the terms "incurable" and "chronic" terrified me. I bought a book to learn more about it... the chapter on cancer scared me even more! I was depressed, and was referred to a psychiatrist for help in dealing with depression. It was very useful indeed to have someone to talk to and who could help me deal with many issues, some of which I still grapple with as the disease is chronic... it never really goes away.

The best thing, however, about being diagnosed was that finally I was given the right medication, and it worked wonders for me. I had energy, I wanted to go out again, and do stuff with the family... I found my life again! The diarrhoeas became less, and I felt energised and alive. The steroids had their own issues...I found that I had mood swings and was easily irritable, and edgy, and ultimately they affected my bones. I later went on other medications to spare myself the side effects of steroids.

I felt well for a few years, and then decided to have another child in 2002. I decided to go off all medications during pregnancy and I found that my symptoms went away, and I was very well. Someone joked that maybe pregnancy was my cure for Crohn's... I joked back that I would certainly need help raising 15-20 kids if that was the case! Unfortunately though, within 4 months or so after delivery, the symptoms returned... as the body readjusts hormonally etc... and so I was back at the hospital, and on various medications again.

My fourth and last pregnancy went well too. I was on some medication at that point, and able to eat and had few diarrhoeas, though I was severely anaemic. It has taken me 5 years post-delivery to build up my iron levels...

In the process of living with Crohn's I have "starved" for 8 weeks in 2005 when I did not eat but only drank a special drink 8 times a day in order to avoid intestinal surgery, I have had 6 colonoscopies, I have gone on immuno suppressants and other drugs which have troubled me with their side effects, and to some extent, lost a lot of the essence of who I really am, or who I thought I was... I am still reworking the new me... and every time I think I know who I am the Crohn's flares up again, the carpet is pulled from under my feet, and I am at sea.

No one knows the cause of the disease, and hundreds of researchers are spending millions of dollars trying to find a cure. It doesn't really matter what I eat or do... I can ameliorate the symptoms through destressing and dietary changes, but I cannot get rid of it through any act of my own. The fact that I have retained some measure of my sanity through all of this baffles me... and I remain grateful for the loving care and concern of family and friends who have suffered alongside me. I don't know why this disease came to be a part of my life but I like to think I can still find a way to live with it. I have to, and I want to, so I shall!

(for more detailed information on Crohn's Disease, Ulcerative Colitis ie the two Inflammatory Bowel Diseases please visit the CCFA website. The link is at the top right corner of my blog page.)

Thanks for reading!

Pav