A Paradigm Shift Accompanied By Answers and PegLyte

This is my second post for Crohn’s Week, which details my trip to the gastroenterologist following more than a year of pain, blood and a few too many trips to the washroom.

It didn’t take long for my attitude towards a diagnosis to change. I started to read more about IBD and had resigned myself to the fact that I probably had Crohn’s. All signs were pointing to yes, and after 14 months of pain and a 3 week stint of diarrhea, a diagnosis was going to mean answers. You might say that a paradigm shift occurred as my anger and sadness turned to relief, acceptance and positivity.

Up to that point I had faced my fair share of obstacles in 24 years. My parents separated when I was 5 and then again when I was 12 (after a reconciliation in the middle), my mother committed suicide when I was 13, and my father faced his own demons in life. I never felt great about my body and it wasn’t until I joined Weight Watchers in 2006 that I attained healthy weight and perspective. Many people would look at these things and spend their lives feeling sorry for themselves. Not me. With all of the challenges that I have faced in my life, I have moved forward with a positive attitude and a smile on my face. My life has been a beautiful gift and I try to live each day to the fullest (hence why my blog is called ‘Dancing Through Life’) and I decided that my visit to the gastroenterologist would be no different.

The administrative assistant who handled referrals at the clinic called me the following day and scheduled an appointment with Dr. A less than a week later. In his office, I once again told my story of unexplained illness, diarrhea, blood, urgency, lethargy and anemia. I even got to drop my pants and have the second man (in less than a week) poke at the fissure on my anus. After recounting my whole story, Dr. A seemed fairly certain that I had IBD, but wanted to perform a colonoscopy to be sure and get a sense of how badly damaged I was on the inside. Just prior to my appointment there had been a cancellation, which meant that it was only going to be 5 days before I had a camera in my behind.

Peglyte-4L For those of you who have never prepped for and endured the joy of a colonoscopy, I’ll start off by saying that the prep is 1,000 times worse than the actual procedure. The day before my procedure I was not allowed to eat anything, only clear fluids. I had some nice juice and broth throughout the day, which was fine. That evening I had to drink 4L of PegLyte, 1 cup every ten minutes until it was gone, to clean everything out.

PegLyte is absolutely disgusting.

While Peglyte may smell like fruit, it does not taste like fruit and has the consistency of half-set jello. The first few cups were okay, the next few were bearable, but somewhere I around litre 2 I started to feel awful. Every cup was a chore to choke down and at litre 3 I was in tears. Poor Joey had to urge me to continue drinking it, at which point, I told him where he could shove the PegLyte. After trying a sip himself, he understood my pain. I finished roughly 85% of the stuff, gave up and went to bed. I spent most of the night making trips to the washroom as the PegLyte did its job cleaning out my bowels.

Joey took the day off to accompany me to the hospital. My appointment was first thing in the morning and I wasn’t sure exactly what to expect. I read Twilight while we sat in the waiting room and listened for my name to be called. After putting on a hospital gown I was led to a bed where the procedure was explained to me and the anaesthesiologist and I chatted about what his children were for Halloween. The next thing I terminal ileumknew I was waking up and a nurse was asking me if I wanted juice. I (thankfully) missed the whole part in the middle where the camera was inserted and Dr. A had a look around. As I was sipping my juice he came over to my bed to tell me that I had Crohn’s Disease.

He explained that Crohn’s can affect a person anywhere from their mouth to their anus. He brought over a diagram and showed me that my disease was located in my terminal ileum. The terminal ileum is where the body absorbs B12, which explained my B12 deficiency and subsequent anemia. He mentioned that there was a small tear close to my anus that wasn’t healing because it was probably re-opening whenever I had a bowel movement (which at this point was 2-3 times each day, so you can imagine how little healing this tear was actually doing). Dr. A pulled out his notepad and scribbled a prescription for Pentasa (an anti-inflammatory, for my inflamed ileum) and Flagyl (an antibiotic to help heal the tear and prevent further damage and infection) I thanked Dr. A, changed out of my hospital gown and went with Joey to enjoy my first real meal in 36 hours.

We actually had a really nice lunch, although I wasn’t as hungry as I thought I would be. We talked about the procedure and diagnosis and I felt pretty at ease with the whole thing. We stopped at a bookstore on my way home and I picked up Crohn's and Colitis: Understanding the Facts About IBD. I had some stomach cramps throughout the day but spent most of the afternoon sleeping them off. I woke up in the evening and realized that while I had been diagnosed with Crohn’s Disease earlier in the day, it meant that I had an answer to why I had been suffering for the last 14 months. The answer also meant that I could now become an active participant in my healing and work towards getting back to feeling good again.

Tomorrow I’ll discuss the strategies I’ve employed in my path to healing

16 comments:

VeggieGirl said...

Amen!! The diagnosis does NOT automatically mean that you have to suffer and live negatively. Here's to staying positive.

Looking forward to reading the next installment :)

Emily said...

Very interesting reading about your story. I just finished my GI rotation, and I actually got to see a colonoscopy. It does not sound like a fun procedure, though.

Here's the kale bagel recipe: http://havecakewilltravel.com/2009/07/27/have-you-done-your-kagels-today/

Anonymous said...

You have been through a lot. I admire you. I mentioned a lot of my trouble yesterday. My gastroeneterologist sent me away to gain weight first though. He feels my low weight is what causes the problems with my right side-stitching and my bowels and the nausea (that has not been a problem for a while now though). But if I think back on it, the symptoms started and lead to further weight loss. My naturopath wants me to gain more weight and continue taking some digestive and herbal supplements however before considering a return to the GI doctor. She feels (and I worry) that invasive procedures should be avoided if necessary. And honestly my body is so tiny right now that I worry a colonscopy or endoscopy might actually hurt me. I am in a difficult and frustrating spot. Particularly now that I must return to work and still face so much fatigue and body soreness. I look forward to the rest of your story.
P.S. Megan Telpner (on her website) mentioned a book called Healing Through Whole Foods: Asian Practices...etc...do you think this would be good. I have read several books , but always always looking to read anything I can get my hands on.

Lauren said...

Your positive attitude is so inspiring!! I was diagnosed after 3 months of pain and going to the bathroom. I had a colonoscopy (I took pills, thank God, even though they are horse pills..lol). I took Asacol for a couple months then got really bad, was hospitalized and put on steroids, so I wasn't at all as positive as you, especially since there wasn't an end in site! Thanks for sharing, you really are so brave!

A.Leo said...

You have been through so much, and your positive attitude is REALLY inspiring. I love hearing your story and I'm so glad you're sharing! Thank you.

Meg's Gut said...

Wow, you were quick to accept what you were dealing with. It was just three weeks ago that I decided if I wanted to live a happier life I had to accept my Crohn's. I love this whole "acceptance" thing! I wake up each morning a happier person!
I must agree with you on the colonscopy prep. It is awful!!!! (But definitely worth it!)

Anonymous: I have the book Healing with Whole Foods. It's really interesting, I would recommend it.

Dori said...

Great post. Thank you for being so honest. I haven't tried PegLyte but I have tried Half Lytely, Go Lytely and OsmoPrep -- pills you think would be easier to take then the drinks but are actually MUCH worse.

They all made me vomit, but the pills made me throw up literally nothing (since you can't eat all day) for 13 hours straight. None had the intended effect though!

I am so glad you were able to find answers and make your unbearable PegLyte experience worth it.

Kaarina said...

Holy flashbacks to my own colonoscopy, batman! The prep was definitely the worst part. At the time I lived in a one-bedroom apartment with a roommate on the couch. I had asked if she could stay at her boyfriend's for the night because I knew what the prep would entail, but instead they both slept at my place. It was so embarassing! I was running to the bathroom every few minutes and just moaning on the toilet. Ugh.

marie said...

I just wanted to remind you of how inspiring you are :)

xo

GF Gidget said...

That reminds me of a song: "You've got to ac-cen-tuate the positive..."
Having a diagnosis is definitely something to be positive about. You can then begin to be proactive regarding your illness.
Sending love your way, little Miss "P.P.P."! ;-)

Amanda (Two Boos Who Eat) said...

Great post. Reminds me that the digestive system is one intricate organ and should not be taken for granted. I love your positive attitude and can't wait to read more!

imanorganicgirl said...

Wow That brings back memories. I decided not to add flavoring to mine and it was the best choice when I was sitting in the waiting room everyone was talking about how awful certain flavors were and I was glad mine just tasted like slimy sea water. I remember getting so light headed and drinking gatorade because it was the only thing that made me feel human. I also don't remember anything after the colonscopy until I woke up later that night. My mom said I was having a conversation with one of the nurses though about something. They still can't figure out whats wrong with me. You're a lucky to know what your battle is.

Meghan (Making Love In The Kitchen) said...

You missed out! I got to watch the whole thing on the screen.

Tundramunkie said...

Loving these posts, Ashley. And do you know what a gem of a man you have? I love reading about how "there" he is for you.

You two should make some babies :oP

Ash said...

Tundra - I love you!! He's pretty awesome, isn't he? We will be making babies in the future... I think it's a little ways away.

Thank you for everyone who has been sharing their stories in the comments of my posts this week!! I think it's really helpful for people to read, because then it's not just my experiences! On Friday I will be sharing details on others with IBD. I truly believe that all of you are helping to raise awareness as well and I am so thankful for that!!

I have no read Healing Through Whole Foods, but it's on my reading list.

Mathieu Gagné said...

Hi I just found out your story while searching for comments for peglyte. I have to drink that dam thing tomorrow hehe. I had colonoscopy before, but this is the first time I'm using this stuff.

I have Crohn disease since I'm a kid. I've been using pentasa for a few years. I also had to use flagyl for the same problem when I was a teenager: really not cool! I think I have worst memories from that than from anything else. But the medication was really useful in my case for that particular problem. I'm a bit surprised you didn't get any stronger medication.

I wish you good luck! You seem like a nice and positive person so I'll leave you my address if you're ever interested to talk about special diet, medication or anything that might help you.

skywatcher18@hotmail.com

Mathieu