How Did I End Up Here?

Some Health Backstory

It wasn’t always this way. Things began to veer off course as I was approaching my 50^th birthday. Happily trucking along in life when my guts decided to make things messy – quite literally! Hot flashes and mood swings I had been mentally preparing myself for at this stage in life but chronic diarrhea?! No one warned me about this! At first, I thought it might have something to do with the hormonal changes that menopause brings but no. Turns out I had lymphocytic colitis, a not so common inflammatory bowel disease. ‘Colitis light’ I called it since the symptoms were not as devastating as Ulcerative Colitis or Crohn’s and it did not put me at a higher risk of colon cancer. I learned to manage it for the most part through dietary changes and over the counter medications. For some lucky people, lymphocytic or microscopic colitis somehow clears up on its own. I was sure I would be one of the lucky ones.

Skip ahead a couple of years and my guts became considerably more troublesome almost overnight after taking antibiotics. Relentless diarrhea that landed me in the hospital weak, dehydrated and with low electrolytes. Prednisone was prescribed until further tests, including a colonoscopy, could be done to determine what else was going on in there.  Nothing conclusive was found.

Searching for other possible solutions, I began to work with a naturopath. Between taking various supplements and eliminating a number of foods which I had a sensitivity to, the diarrhea was under control and I was slowly reducing the prednisone. For three glorious weeks, I felt hopeful and better than I had in months. That feeling was short-lived. I had mussels at dinner one evening (which are not one of my food sensitivities, I might add!) and all progress was gone. Something must have been off with the mussels as I became violently ill that night and my bowels have not been the same since. At that point, not even the prednisone worked. I did whatever I could with anti-diarrheal medication from the doctors and supplements from the naturopath. All helped enough to get me through the day at work but after weeks of this, I was slowly becoming weaker and losing weight steadily.
It is strange but somehow you adapt to this new debilitated self and it becomes normal to you. Some days or moments, you even feel you might be getting better. Funny how the mind plays tricks and how we can rationalize our situation much to the chagrin of loved ones who are much more cognizant of our decline.  

Eventually, I went to the hospital again overnight because I was so dehydrated – to get my fluids topped up so to speak. I also began another medication which I anticipated would calm my insides down. I was fine, I am managing this I felt and did not think that I needed to be admitted to hospital while we waited to see if the new meds would work.  I was afraid that I would not come out again, of not being able to work anymore. I was afraid of this un-named disease truly not going away.

I was not fine, I tired easily, could barely walk up stairs and was losing weight drastically. A week or so after my last hospital visit my daughter suggested I visit the family doctor to see what options there might be other than going to emergency. He took one look at me and was calling emergency to get me in ASAP. Skip the line sort of thing. I had been coping, adjusting, and unknowingly become quite critical. My blood pressure was very low as was my potassium level and other electrolytes which put me at risk of ‘fatal heart arrhythmia’ as one nurse told me. I was placed on a heart monitor and I was to be put on Total Parenteral Nutrition (TPN). Despite eating, I was not absorbing many nutrients and slowly starving.

After a number of more diagnostic tests, finally, a diagnosis – collagenous sprue. A rare inflammatory bowel disease thought to be linked to Celiac Disease. ‘Collag-a-whaat?!” I thought. My gastroenterologist was thrilled to have a diagnosis at last; all I could think of was that he stop talking so I could go throw up.

So we began to learn about what this rare disease is. It was unnerving to first read one early documented case, a middle-aged female, in the early 1970s succumbed to the illness. A disorder that along with lymphocytic colitis, women in their 50s are more likely than others to be diagnosed with. Yay me! I won both rare prizes.

On the heels of this overwhelming diagnosis, I had a significant intestinal bleed the following night. Nearly losing consciousness, I required an immediate blood transfusion. It all seemed so unreal, this is not really happening to me, is it? I was afraid to go back to sleep, afraid I would not wake again. I am ever thankful to the nurses and doctor that took care of me that night.

I came home after two months in the hospital and the completion of training for Home TPN Program. I remained positive that the biologics therapy I was on would put the collagenous sprue into remission or at least make it manageable. After two infusions, things were not yet turning around. Over the following five weeks I was at home, the nausea and weakness increased and I experienced other medical complications due to months of malabsorption. Blood work showed that my liver and kidneys were not functioning well. It was back to the hospital for me.

Things were not looking good. It felt like my body was giving up. No one was sure that I was going to get through this. I made peace with my Maker really feeling that I would not be here for many more days. After a couple of weeks miraculously, it seemed, I began to feel marginally better each day and was well enough to come home three weeks later.

I was not giving up on the biologics yet since I had heard that it can take three to four infusions before you really begin to notice substantial improvement. I had the third infusion and began to feel even better roughly a week to ten days following. The nausea had completely subsided and I could finally eat more than a tablespoon or two of food. Many fewer trips to the toilet too.

My hopes were dashed again with the fourth infusion whereupon I had a severe allergic reaction. I tried and didn’t respond well either to other Anti-TNF blockers. Thankfully, at this point, I was off the Prednisone and aside from a daily antidiarrheal, I was holding steady. It seemed I was somewhat in remission for nearly three months until days before our wedding last June. This time it was my Father in the hospital. Worrying about him and thinking he might not make it to our wedding shook me up. Stress can certainly exacerbate IBD symptoms. But who knows, maybe I looked up instead of down or turned left instead of right. So, for now, it continues to be a juggle between dealing with this chronic disease, more hospital visits, hoping to find a therapy that works and getting on with all that is Life.

Thrilled to say that the wedding went off without a hitch – Well, Doug and I did get hitched! The day was beautiful and everyone was healthy and celebrating.