I can’t believe that it’s been a week since my last blog post – time has just flown by this week. Since my little story was posted, the response I got was overwhelmingly supportive. It’s funny, I got a lot of messages thanking me for being brave, for being so honest, but when I sat down to write, it never occurred to me that sharing the beginning of my story would be a big deal. Over the last 6 years I have met a lot of people suffering from Crohn’s or Colitis, a lot of people who have had it a LOT worse than me – honestly, I have always considered myself very lucky, all things considering. Since my diagnosis and that original flare up, I have only had 2 fairly minor ones to date, I have been fortunate enough to stay off the operating table and thanks to my current treatment regime (more on that later), my symptoms are relatively minor and mostly manageable with diet and a few other life style choices. Once I understood this disease and the symptoms of a flare, I could pin point at least 3 other instances of flares in my life, albeit un-diagnosed at the time, from about 18 to a year or so before diagnosis. But, I have dear friends missing several inches of their bowel. I have met people who have spent more time in the hospital than at home in the last few years. And despite the fact that statistically, the odds are against me, and that IBD continues to be a disease with no cure, I still count myself extremely lucky.
However, as someone I respect a great deal reminded me this week, none of that makes my experience less valid or less worthy of talking about. I’m not looking for pity or for a pat on the back – I appreciate the kind words, I really do, but that’s not why I am doing this. When I was diagnosed, I was completely devastated and alone – don’t get me wrong, I was surrounded by friends and family that were nothing but supportive, but absorbing what was going on is a difficult thing to get past, and I don’t want anyone else to go through that. So… lets get on with it, here is a little bit more of my story.
The night following my scope and diagnosis is a blur. I will spare you all the details, anyone who has had one before knows, a scope is not the most pleasant experience… the sedation did it’s job, but I reacted poorly to it overall and was pretty out of it for the next 12 hours. In the days that followed, I spent my time googling Crohn’s Disease on the internet then promptly having melt downs because of what I found. Family and friends dropped by, our house was full of get well flowers and cards from the many wonderful people in my life. A friend of mine with medical training dropped by with some reading for me, including information on nutrition and supplements for someone with IBD, and while I was still exhausted all the time and tired easily, I was enjoying being able to move a little easier and being pain free.
I took my medications faithfully, enjoying the positive differences they were making initially, and eating. Yes… Eating. Without pain and most importantly, without the violent and urgent reaction that had followed for the last year. At first, I LOVED me some meds – I took them, I felt better, what was not to love? My stomach had shrunk a great deal so I could only eat small amounts at a time, but I was really enjoying feeling normal. My joint pain was getting less every day, the stiffness in my hips and knees eased considerably and though I was still weak from months of malnutrition, the ability to walk without pain was amazing and I would spend time just walking up and down the stairs. Each and every day I was discovering just how sick I had been – as symptoms of the flare disappeared, I would notice the little things… when I leaned against the bathroom counter to put on makeup, it didn’t hurt in my stomach! When I went to the bathroom, I didn’t double over in pain. When I slept, laying on my left side didn’t send stabbing pains through my core and wake me up, and I SLEPT! Even though I had been nothing but exhausted for what seems like forever before I was diagnosed, I never slept through the night, I was never rested – every time I moved I hurt, I was feverish all the time and tossed and turned. Whatever magic these pills were working, I was all about it…
I’ve been back and forth on if I should share exactly what I was taking, I don’t want to sway someone’s decisions, but why should I hold back now? Besides, it’s a pretty standard script for anyone in a severe flare. I was given a prescription for Prednisone, a corticosteroid and immunosuppressant drug that is given in fairly high doses in cases like mine, and Imuran, a second immunosuppressant that is often given to transplant patients to reduce their chances of rejecting the new organ. A lot of immune suppression you say? Well – that’s because Crohn’s Disease is an inflammatory auto-immune disease… in the simplest way possible, it causes my own body and immune system to attack itself – most specifically in the gastrointestinal tract, though it rears it’s head in many other ways as well. It is a chronic disease, generally characterised by periods where symptoms are relatively in check and times of Flare Ups where symptoms are NOT in check and my body hates me… and I hate it right back. There are many different medications and schools of thought on treatment for Crohn’s, but ALL of them are to control & manage our symptoms – they are not a cure, they help heal damage, but they don’t erase it. And, Prednisone & Imuran certainly have their place in the world of IBD, I cannot be more clear, they saved my life, but they have some nasty side effects too. The combo had to be taken in a very specific way – Prednisone early in the day, as you would suspect with the classification of steroid, gave me an uneasy kind of energy that I quickly grew to hate. I swear I could feel it surging through me, I had the shakes, my hand was never steady, it jacked up my body temperature and I was HOT all the time. Everyone around me also learned that “Roid Rage” is a real thing, I legit could not control my emotions and would easily fly off the handle one minute, be sobbing the next. It not only helped my appetite return, it made it almost insatiable – I could have eaten all day every day, and sometimes I did. Naturally, that led to rapid weight gain, especially in my face, which was a special little bonus of the drug that is lovingly called “Moon Face”. I will talk more about the weight gain in another post – that’s a whole other topic of conversation. The thing about Prednisone is that you cannot just STOP taking it when you are done, that would put your body into shock and withdrawl (think about that), so you have to taper – I had to taper over a very long time overall, being on it for nearly a year. Imuran on the other hand, was far more subtle and was best taken at night because it could cause stomach upset, I am actually still on it, but the combo of the drugs did a great job of keeping down my immune system… and ushered in a new reality for me, one in which I got sick very easily.
After a week or so, I was able to go back to work – kind of. In my first few weeks back, I learned the hard way what it truly meant to be immune compromised and how quickly infection can set it. I had been so sick for so long, I didn’t know how to read my own body anymore, I didn’t know what was not normal. Needless to say, after going into septic shock at work for a bladder infection turned kidney infection and spending some time in the ER and hospital, it was a little tough to convince my employer I was fit to return to work. I spent my fair share of time hooked up to IV’s for various rounds of antibiotics and blood draws to monitor things. Infections and fever sucked, but it was nothing compared to the symptoms of a flare up, and I quickly came to the quiet understanding that the result was worth the cause.
Physically, my real self was returning, and with each day I got stronger and further away from the memory of how bad it was. Mentally, I was struggling, my husband seemed to think that now that I had an answer and was on medication, there was nothing more to talk about. Many people in my life did their own googling – everyone had ideas, tips and tricks, everyone had an opinion about how I should live my life now, it was becoming exhausting and overwhelming. I was biding my time until I got to see my new GI Doctor again, convinced he would have all the answers for me – I honestly imagined he would basically just hand me a booklet with all the info I would need and I would be on my merry way. Google told me there was no one treatment for us all, no one diet that worked for everyone, but that couldn’t be true, I hung all my hopes on that upcoming appointment.
Thanks again for taking the time to read a bit more about this little journey of mine! There is more to come, of course. I cannot be more clear, during this time, I have had amazing friends and family support me – expressing that I felt alone is NO slight to them, they did anything and everything in their power to help me. The feeling was purely on me, and as I have come to learn over the years, many of us went through the same. Again, if you have read this far, THANK YOU. Happy Sunday friends 🙂 until next time…