Putting Humpty Dumpty back together again

The Ulcerative Colitis Journey between week 6 and 8 of my Entyvio infusions

Being on biologics is a love-hate relationship. When the infusion goes in there is this dread of ‘what symptoms will I feel this time?’. I end up feeling this dull ache in my belly (even when I prepare by taking ibuprofen and gallons of water) followed by an afternoon of sleep and fetal position. It’s not really a pain, its more like my body has recruited the full immune army to attack this foreign substance in my body and they are just telling me ‘shh shh go to sleep now, we can handle this’. After about a half-day of delusional insomnia I end up feeling better. I mean, a lot better. To anyone who hasn’t had an infusion before, it kinda feels like someone put Humpy Dumpty back together again. I have a bit more mobility, I fear less about diarrhea and I can eat a few more things I couldn’t during week 6-8.

But then week 6 hits and – bear with me as I try to explain this – I feel like parts of my colon are chipping away day by day. First its layers of my mucosal lining that start to increase the magnitude and the frequency of bowel movements. Then there is this dull ache that starts on my descending colon – a pain that nobody should ever say they have because nobody should ever be able to feel their descending colon; that’s a thing! Then that pain just starts to spread a bit and reveals some adjacent pain near the base of my colon (the spot just before you poop). By week 7 I start count the hours until my next infusion. Literally everything I eat can be felt moving its way through my digestive system and makes the most atrocious gurgling sounds. People say your food takes 24 hours to pass through your system. Well… Ive seen meals with very distinct colors make its way through me in about 3 hours during week 7. The latter part of my colon is just full of bruises (biologically probably exposed ulcers) so eating is not entirely pleasurable even when its things to spoil myself with. Speaking of which, there is no room to spoil ones self during week 7 because during week 7 your body is not forgiving. Maybe your body could just slightly scold you on week 3 or 4 with an unpleasant poop or a smelly fart, or worse a sleepless night. But not week 7. No no week 7 would mean chronic pain and constant diarrhea followed by sweats, shivers, and cries.

The other thing that intensifies during weeks 6-8 – for those of us blessed souls battling both endometriosis and ulcerative colitis – is the risk of bleeding ulcers. If in fact the entyvio is gone from my system and there is absolutely nothing protecting my colon, then there is absolutely zero chance I am popping any naproxen. For those of you who have been following me, I have been given strict permission (yes strict) from both my endo specialist and my GI to take up to two 250ml tablets a day of naproxen when absolutely necessary for my diaphragmatic endometriosis pain but must stop immediately upon signs of blood in my stool. However, on week 6 and more so on week 7 I don’t even risk it. I suffer through the pain – maybe pop a hydromorphone if I really cant stand the pain – but my colon is so vulnerable during weeks these weeks that the thought of me having a flair and starting all over again is cringe-worthy.

I sat in the clinic today, watching the sun reflecting off the trees through the window as my infusion started to drip through my veins. I noticed at some random moment that I started to smile because in this messed up life that I now live in where I am required to sit in this chair every 8 weeks, I was just so thankful that I reached week 8 and I could reset the timer again.