Ugh! Ugh! Ouch!
Ugh! Ugh! Ouch! Sigh! Ouch! Ugh!
Ugh! Ugh! Ouch! Sigh! Ouch! Ugh! Ugh! Bleh! Ouch!
Yea, I think that just about explains what is happening in my gut right now…or lack there of. Sorry guys! I know some might say, “Such language!”. Yea, well I save the decorum for when it doesn’t feel like someone is stabbing my pouch with a dull knife, pricking the bottom of my feet with pins, raking a rusty garden tool over my back or I’m not painfully pooping blood. Too much?! Sorry. This is my reality at the moment. A very fun one as you can tell from my subtlety. You might even think I am exaggerating. I mean, I had never experienced an IBD flare up, I just might think this is a bit…dramatic. I wish I were exaggerating! I wish this was all just a figment of my imagination. Or just a belly ache, as someone said to me recently in an email. She felt that I complain a little too much on my site, it’s a bit depressing and that everyone gets a belly ache every now and again. I simply wrote back: “I wish that all the pediatric gastroenterology patients all over the world who are in wheelchairs, on feeding tubes, and living with ostomies only had belly aches. I wish that all I had to do was take some Pepto and be ready for the next day. Thank you for your email!” I realize now I should have explained to her exactly what happens during a Colitis, Crohn’s or Pouchitis flare up. And even though I doubt she really thinks that this is just a belly ache, she still couldn’t really understand all that happens during a flare up. Hell, I didn’t know until my mild-moderate UC changed overnight to, “Houston we have a problem” UC.
I think what people forget or don’t really know is that Inflammatory Bowel Disease is an autoimmune disease. It’s an autoimmune disease that causes inflammation, specifically to our digestive system. And if you think about it, this system is already a very very sensitive area of our bodies. Its set off by the smallest change in bacteria, emotional and physical state. It then sends off other triggers to areas in your body to also go haywire. Think about it. When you get food poisoning, it’s more than just an upset stomach. You can experience things like sweats, dehydration, dizziness, headaches, muscle aches, etc. etc. Essentially that’s what happens when an IBD patient experiences a flare up. The digestive tract gets triggered by inflammation by some random cause and then it sends off signals to other parts in your body to join in it’s crusade to go on strike and shut down. We experience an array of symptoms that vary from patient to patient. I personally have had weight loss, dizziness, nausea, joint pain, painful bowel movements, bloody diarrhea, hair loss, insomnia, dehydration, poor vision, skin rashes, cysts, migraines, broken teeth, dry skin, dry eye, eye pain, back pain, hip pain, nerve pain in my feet and scalp, fatigue, uncontrollable vomiting, asthma attacks and arthritis flare ups with joint locking. Yep! All of that because something has picked a fight with my colon.
Now that I don’t technically have a colon, it’s a little different. I get something called pouchitis. It’s a bacteria that forms in my reservoir. The treatment is a little bit quicker and easier than a UC flare up. All I need to do is a take a round of antibiotics and it’s done. Which I am doing now. I am on my fourth day of Flagyl & Cipro. Feel like I have hair on my tongue, but the bleeding has stopped. But I’m still experiencing cramps in my pouch, pains on the bottom of my feet, fatigue and insomnia. My body hurts quite a bit actually and I get nausea easily. I also don’t have an appetite. However, if I don’t eat my pouch turns into the Hulk and I get cramping and severe pain. Yea, no fun! You see why I say the Jpouch is a great treatment, but not a cure for IBD?
So, if you know someone who says they are an IBD patient and they aren’t feeling well that day, do me a favor? Take a look at my list of flare up symptoms. I can guess that this person is experiencing at least 5 of those, if not all at the same time. After you look at the symptoms, give that person a break. They are a lot stronger than you know to have to deal with this on a daily basis. And if they are down right now, that means they truly need the day or the week to fight back! That’s what it is. A fight! A fight to walk…to eat…to survive. They don’t need a solution or advice. They just need understanding and time.