5 Things I Wish I Knew When Diagnosed with IBD
When I was finally diagnosed with colitis in 1998 I initially felt happy and relieved. I had lived with bowel symptoms of one sort or another since I was a child. In high school my symptoms became bothersome and I went through a series of GI tests only to be told my ills were most likely caused by stress. In 1998 my symptoms became severe, lingered, and could no longer be ignored - I had lost about 20 pounds in a matter of months. I found a GI, explained my history, and underwent my first colonoscopy after which I was diagnosed with colitis.
I had assumed that "having an answer" to my problems would also provide me with the cure to my ills. As we all know, that is an incorrect assumption when it comes to IBD. There were also a few other things I didn't know when first given my diagnosis and here are my top 5.
1. As of yet, there is no cure for IBD
This was hard to hear and to accept at first. But with time and working through the five stages of grief (see my post from July 16, 2008) at losing my "old" self and learning to accept my "new" self I was able to realize that cure or no cure I was no less a person because of having IBD than I was before my diagnosis. I knew I couldn't sit around waiting for someone else to cure me, I had to get on with living.
2. A flare won't go on forever
By the time of my 1998 diagnosis I had been having severe symptoms (10-30 BMs/day, bloody D, severe abdominal cramps, rapid weight loss, fatigue, and low grade fever) for nearly 6 months. And when my doctor told me there was no "cure" for IBD I was depressed and convinced that I was doomed to a life spent living in a bathroom in an IBD flare. Thankfully, through a lot of trial and error (some of which I'll explain in #2, #3, and #5 below), with a lot of patience, support, and love from my husband, and trusting myself and my doctor I would learn that it was possible to come out the other end of an IBD flare-up. And in an odd way, I even ended that first flare a stronger person than the one who existed B.C. - before colitis.
3. Rx drugs may not be the whole answer
The first line of defense my GI suggested to me was a prescription medication - Asacol. At the time the 5-ASA family of drugs, to which Asacol belongs, were still the relatively new kids on the block. But I was game and figured that the newer the better. I also figured that I'd take a few days worth of these brownish-orange colored pills and feel miraculously better. Not so. I took 9 of those puppies a day for a week, then two weeks, then three, four, five, and finally by week six I began to notice a difference, slight as it was. And I still wasn't cured or out of my then 7-month flare.
Needless to say I was frustrated. The pills were expensive and they weren't the quick and easy miracle I had hoped them to be. But, even so, I was feeling slightly enough better to allow myself to expend some energy looking for additional possible solutions. I quickly became aware that what I ate could either be helping or infuriating my symptoms and I decided to embark on an elimination diet (see my post from March 12, 2008 for details) to see which was the case. After 3 months of diligent eating and recording how I felt and how my BMs and other symptoms reacted to certain foods I was able to come up with my list of "trigger foods." With this new knowledge in hand, it wasn't hard to make the commitment to eat differently. Out of my life forever were foods made with preservatives, pre-packaged foods, caffeine, alcohol, certain fruits and veggies, beef, fast food of any variety, milk, and on and on and on.
As I continued to take the Asacol and implement the changes in what I did and didn't eat my symptoms continued to improve.
4. Stress can make IBD symptoms worse
It wasn't until about three years after my diagnosis that another doctor explained to me that the gut is where we store many of our emotions. It's like when you're a child and you used to get "butterflies" in your stomach when you felt excited or scared or nervous. I used to tend to think that my emotions came from my mind, but have come to believe that the mind is where we process our feelings and emotions but the gut is where we store them. But, emotions are what make us human and so we aren't just going to be able to get rid of them like an old stinky sock. Instead, I realized I had to learn how to get a grip on my emotions when they became negative in the form of stress. And to do this I came up with some "tools" that include everything from journaling - getting my thoughts and emotions out of my body and down onto paper or my computer - to rhythmic breathing, massage, Reiki, yoga, exercise, and even spending a little time at the gym with the punching bag where I can physically release those pent us emotions from my body.
5. Even if there isn't one cure that works for everyone, other IBDers can really understand what you're going through
I have a fabulous husband. And he's very understanding and supportive of me and my life with IBD. Now, that said, he doesn't have IBD, never has stomach issues, and can eat anything he wants, plus stress just doesn't seem to affect him in any adverse manner. And so, as wonderful as he is, he'll just never really be able to "get" my situation. That's why it's so great to be able to reach out, through the internet and support groups, and connect with other people who do "get" it and can really know what you're feeling both physically and emotionally. Plus, since there are so many ways of treating IBD and so many things that work for some and not for others, it's a great way to share our success stories as well as those things that didn't work so well.
For more in-depth information about any of my experiences listed here be sure to read my previous posts on this web site or my book, Living with IBD & IBS: A Personal Journey of Success - www.ibdandibs.com