It’s been a while, here’s why…

So, bet you thought I forgot about this blog.  Well, I was asked to write a little article for another gal’s website to tell a bit about my experience with colitis.  I was very excited to share my experience with more people but I suddenly began to suffer from a case of “I don’t feel like writing” which actually (you will see more in my article) turned out to be more a case of “this is a pretty difficult and traumatic story to tell and not all that fun”.  But I told it.  I’ve told it in parts multiple times throughout my life but have never sat down and just poured the whole story out on paper or rather, in this case, a word document.  I’m going to give you the story in full over the next week (it’s 9 pages typed so I figure there’s more chance of you actually reading it if it’s given in smaller increments).  Here goes… Oh, and if you are of the few who have been following my blog, there will be a bit of repetition from other entries as I have mentioned some quotes or experiences in past writings.

From my recent article about my experience with colitis (part I)

My friends came over to help me make the dress form to start making my own wedding dress on.  Yes, this is a priority.  Though probably not the only reason I haven't blogged in a while...

My friends came over to help me make the dress form to start making my own wedding dress on. Yes, this is a priority. Though probably not the only reason I haven’t blogged in a while…

I agreed to write about my journey with colitis over one month ago.  I wondered over the last few weeks what was making it so difficult for me to sit down and write this.  I hashed it up to wedding planning (I’m trying to sew my own dress, I know, crazy!) and studying for my licensing exams (to become a licensed Marital and Family Therapist).  However, as I sit down now, I am surprised (or perhaps not so surprised) by the waterfall of tears streaming down my face; I guess it was more than wedding planning and studying that was keeping me from reliving my many years of illness. 

I was diagnosed with Ulcerative Colitis over 15 years ago at the age of 19, and a day has yet to pass when I can have a bowel movement without inspecting it for possible traces of blood or mucus (which would mean I’m shedding the lining of my colon).  I have had more flare-ups than I can keep count of–and by flare-up, I mean months of weight loss, pain, toilet bowls seemingly full of my blood, sleepless nights due to having to use the bathroom every hour to half hour, headaches from severe anemia, involuntary loss of bowels and an overwhelming sense of helplessness and sadness–but for numbers sake, let’s say around 7 really serious ones.  Some flares lasted for around a year or so, one lingered (after becoming somewhat under control) for about 3 years.  At the time I thought I had just lost so much weight because I gave up dairy, but it turned out I was failing to absorb the nutrients I needed. 

If you suffer from IBD, I’m sure none of this is shocking to you and only too familiar.  I suppose I’m adding the gruesome details for those who don’t understand this somewhat invisible illness.  “Invisible,” in the sense that most normal people don’t go around talking about their bowels–especially very irregular and uncontrollable ones.  Unless, of course, you are much older; I do remember my grandpa marking his bowel movements on a calendar with a “BM.”  I guess I passed the realm of “normal” when I had my first colonoscopy before the age of 50, and instead at the age of 19.

Here's a truly lovely piece titled "A View From My Colon" that is exactly that with an even more lovely picture my mom took of me giving the middle finger in my hospital gown the day I was discharged from the hospital the first time (a sort of F U to hospital stays).  Needless to say the wood and plastic (perhaps toilet seat as well) have been re-appropriated and does not hang on the walls of anyone's home (though my parents did humor its presence for a bit).

Here’s a truly lovely piece titled “A View From My Colon” which is exactly that with an even more lovely picture (displayed on the top of the piece) my mom took of me giving the middle finger in my hospital gown the day I was discharged from the hospital the first time (a sort of F U to hospital stays). Needless to say the wood and plastic (perhaps toilet seat as well) have been re-appropriated and does not hang on the walls of anyone’s home (though my parents did humor its presence for a bit).

I was just beginning my sophomore year of college as a painting major (well, soon to be painting major, as explained later), when I experienced my first symptoms of ulcerative colitis.  I remember being out in the woods where I had carried all my paints and supplies (including a huge iron easel and a large canvas that now hangs, framed, in the foyer of my parents home), painting my first open air oil painting.  Having already copied a landscape and still life painting of the master Post-Impressionist painter Paul Cezanne, I had now sought out the perfect location to create my own masterpiece.  While painting, I was seized up with a cramping sensation, one I knew all too well (I now realize my childhood and adolescent association of “food equals stomachache” was more likely due to early signs of irritable bowel).  Since my perfect landscape location was far from a bathroom, I did what any sensible young lady would do and popped a squat.  As I bent over to cover up the evidence, I noticed small streams of blood in the pile.  However, being the “invincible” teenager that I was, I pushed it to the back of my brain (though, don’t kid yourself, it was as much in the forefront as it could be, I just tried to ignore it). 

The blood and cramping continued over the next few weeks until I finally went to the school health center and was relieved to be diagnosed with hemorrhoids.  The doctor, in a very thick Chinese accent explained what a hemorrhoid was as he drew me a diagram of my anus with little bumps around it (I did save the drawing but have no clue what has happened to it since) and prescribed me daily “sitz baths” (where I bathe my hemorrhoidated butthole in warm water) and suppositories.  Needless to say, as the weeks grew on, my symptoms grew more severe.  I joked with friends about my hemorrhoids and became the “butt” of many a joke.  I don’t think I told anyone (even my parents) about just how bad it was.  Though in retrospect, I don’t think I understood how bad it was.  After all, it’s not like I had a basis of comparison to another severe and chronic illness. 

I used to love those salty morsels (especially in high school because they were free and I could save my lunch money by also collecting classmates uneaten soups).

I used to love those salty morsels (especially in high school because they were free and I could save my lunch money by also collecting classmates uneaten soups).

I began to feel hopeless and helpless and cried a lot.  I was also broken up about a boy that I liked.  I really believed that the feelings I was having (at least the emotional feelings) were due to my pained heart over the boy.  However, now, with a history full of flare-ups, I know how emotionally trying this illness can be and can say that my feelings, at the time, were only partially a symptom of teenage heartache and instead in large part due to the fact that I was shedding parts of my internal organs.  I eventually developed pancreatitis on top of my ulcerative colitis.  If you’ve ever had pancreatitis, you know just how painful it can be; apparently, the pancreas has no pain receptors of its own so it sends these shooting, knife stabbing pains to wherever the heck it pleases, well really just around the stomach, spleen, liver, gallbladder areas (I sometimes wish I could do the same).  I couldn’t even eat a saltine cracker without buckling over in stabbing pain (they seemed to be the least lethal of foods in terms of affecting my bowels). 

Keep posted for the continuing saga of my lifetime experience with colitis in a nutshell…

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8 thoughts on “It’s been a while, here’s why…

  1. Pingback: I-I-I-I-I-I-I’mmmmm NOT dyyyyyyyyiiiiiinnnnngggg… | cureforcolitis

  2. Oh dear! Your story sounds scary and painful. I am on a gluten-free diet, due to coeliac, which has a similar effect of ruining the lining of the gut, and making it hard to absorb nutrients. One of the biggest helpful things was getting some excellent nutrition advice, and some recipes, and foods to avoid – the ones that cause inflammation. These days I eat no bread, and quite a lot of eggs!

    • I think I’m on a similar diet (at first I was eating an omelet a day but I think I burned out on omelettes). My herbalist helps me a lot with my diet and I’ve been doing pretty well with it. I certainly agree, it’s been quite a journey to finding the right diet and someone who is helpful in aiding me monitor it. I never felt issues with eating gluten (except for white pasta) but I’m following the gluten free diet at the advice of my herbalist. I’m glad you four a diet that works for you. Diet is so important. We are what we eat right? 🙂

      • Sounds similar! Protein, fat, and veges is my motto, and I still eat a 4-egg omelette pretty well every day. Brown rice and stoneground cornmeal are the only grains I eat, sparingly, and with fat added to cut down the “sugar shock” to my system. It is helpful to have someone who can monitor the diet, I’m glad you have a herbalist who helps! I have only read the first part of your story, so I hope that you have reached a place of greater health now, through your journey of discovery. We have wonderful bodies, and it is so important to treat them well. Stress is the biggest factor to deal with, do you reckon?

  3. WilderSoul, I have reached a place of greater health. Thank you and yes, stress is the biggest factor. I count myself among the luckiest in that I have an amazing husband who is understanding and super supportive (unhealthy relationships have been one of my biggest contributors to stress/flare-ups in the past). I am still finding out what works and what doesn’t in terms of diet but am doing better than I ever have and am hopeful for a cure around the corner…

  4. Pingback: Around and Around and Around She Goes… | cureforcolitis

  5. Pingback: I’d Like to Thank the Academy… | cureforcolitis

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