Words I don’t want to hear from my doctor are “I’m going to have to insert this into your back passage” followed by
“This shouldn’t hurt too much”
Even worse than those are the following that were said to me last week,
“We are not sure how to treat this.”
I feel like I’m on some kind of warped, pill merry-go-round. Once you pop you just can’t stop.
If the doctors, of all people, don’t know how to treat me what am I meant to do? Let me break down what I have so that there is some understanding.
Pouchitis is where there is inflammation of; yup you guessed it, my J Pouch. It causes cramps, bleeding, fever, aches and pains and my all time favourite, a ridiculous amount of time spent in the bathroom. Which for me is on an epic scale. I can’t keep hold of any food and have lost a considerable amount of weight.
For some reason though I don’t have all the typical symptoms of pouchitis, I don’t have the general flu like symptoms, just bleeding and the toilet trips.
Which makes my surgeon think that I also have something called Irritable Pouch Syndrome. Which is like Irritable Bowel Syndrome except I have no bowel.
Are you confused? Because I am.
On top of all this my surgeon said that my immune system is poopie. Wouldn’t it be amazing if he actually said those words to me?
“I concur that your immune system is poopie” complete with a monocle. Sort of looking like the monopoly man, which for me, is hilarious because my surgeon is of Asian heritage.
When I had Ulcerative Colitis, my immune system didn’t agree with some of the bugs that were in my bowel and basically tried to annihilate them. Now it’s doing the same to my pouch.
This is difficult to treat because I don’t want to go on those God forsaken steroids. They turned me into a psycho and with my current stressful job I will actually kill someone and put myself in prison. It’s not worth it.
My inflammation markers are moderate, yet the symptoms I am experiencing are more to the severe end of the spectrum which makes me a bit of a special case. The only thing I can do right now is test different antibiotics and just hope they work.
In fairness, I’m not particularly happy with it. I want something that will work and I won’t have to be on constant medication. I’ve been trawling the internet for alternatives and reasons for why my pouch is being so temperamental. I’ve booked in to see my old gastro, which to be fair, I’m not even sure the man can help me, but his extensive knowledge of Colitis might be able to put me in the right path to kicking Pouchitis’ butt. See what I did there, made a joke about my bowels having a butt? You see?
Yeah I know lame. Leave me be, my life revolves around butts and poop.
To be honest, I’m not really accepting the “Don’t know how to treat this” there has to be something and if it means I have to find it myself, then I’m going to hunt it down. All else fails I’ll just become a seriously knowledgeable bowel guru and open up a clinic.