Ulcerative Colitis Journey

I cannot poop

I cannot poop.

It is not lost on me how ridiculous that sounds. It is not lost on me how much of an exaggeration and an over simplification this sounds to someone else. ‘What do you mean you can’t poop?’ they ask. ‘There are things you can take for constipation’ they suggest. But it’s not that simple. I’m not constipated, as counter-intuitive as that may sound.

Five months ago I will admit I thought I was constipated. One month post excision surgery to remove adhesions that were attaching my bowel to my abdominal wall, among other things; it seemed like a logical explanation. I wasn’t overly zealous on the pain medications but perhaps the small amount was constipating enough. I would go days without pooping. And while my calprotectin levels showed my ulcerative colitis was still at bay I knew something was starting to get serious. Five months ago I tried magnesium baths, calcium pills, prunes, yoga, pelvic floor therapy, teas, chai seeds… you name it I tried it.

4 months ago, I was given a calprotectin test and told they would contact me if anything was wrong.

3 months ago I finally got to speak to my gastroenterologist. No, it wasn’t lost on me that my GI nurse told me constipation was a normal symptom of ulcerative colitis and that with normal calprotectin levels there was not much they could do. It was not lost on me that the one person who was – by title – supposed to care about my bowels no matter what was wrong with it was really tunnel visioned on active ulcerative colitis. But that phone call allowed me to explain what was happening. That I could go days without having a bowel movement. That the Envytvio infusions weren’t impacting that problem in any way. That my belly hurt constantly. That it felt like when poop reached the top of my descending colon (yes I am now well versed with the compartments of my intestinal tract) it felt blocked. That if poop made its way to my rectum there was nothing I could do to poop it out. Three months ago I bought a squatty potty which really helped push out gas. Three months ago, I was told by my GI to take one dose of Restoralax and one 145mg dose of Constella once a day.

2.5 months ago I was desperate. I was fading. I was in pain and exhausted all the time. I called my GI in a panic and said I needed more relief.

2 months ago, my GI called me back with a solution. A bomb. He said to basically double the Restoralax and double the constella. Fighting ‘constipation’ with a bomb means that 20 min after taking the double dose of constella my bowels are liquified into molten lava diarrhea. I would wake up constipated, take the pill by mid morning, and be empty and spasming by afternoon. Following the bomb, everything would plug up again. I did this once a day for three weeks and then called mercy. I couldn’t do it anymore. I gave myself a two day break and went to see my osteopath. Call it the magic touch but she was able to discern that I had no motility in my caecum. It wasn’t that I was constipated (ie. filling up with poop with no interferences) it was that my poop wasn’t moving into the large intestine. The call it a lazy bowel. After a 40min massage along the pelvic wall lining the caecum she motivated some momentum back into the large intestine. I went home and had a poop. She gave me some tips on how to emulate the same massage she just did, but with not being able to feel what I was supposed to feel, I explored the use of a TENS machine. For 40 minutes a day I applied one node above my caecum and one node on my descending colon (and paralleled that with nodes on the back side). I used the massage function and motivated some movement back into the colon. After about a week I was finding that things were moving along.

1 month ago, I discovered that while I was able to maintain some movement into the large intestine, I was unable to poop anything out. I talked to my GI again. I cried mercy. By the time I talked to him, I was using enemas every 3 days with the occasional suppository when needed. Every 3 days I would have to manually empty my bowels because I had no rectum power to push poop out. No amount of fibre or electrolytes or massage or pelvic floor therapy, or squatty potty has been able to help. I can’t poop. I eat for days, my belly gets distended, and then it pushes against my rectum until I’m forced to use an enema. I told my doctor this on the phone. I said the words ‘I cannot do this anymore’. One month ago my GI took me seriously and promised me we would leave no stone unturned. We did a colonoscopy which luckily showed no active ulcerative colitis. He has booked me a CT of the abdomen, a motility test (whereby I consume metal balls and wait for them to come out) and a defecography (whereby someone x-rays me while I try to poop). He suspects at this point there may be a bulge in the anus. One month ago I felt like there was hope.

3 days ago I took my last enema. 3 days ago I felt empty and energized again. 3 days ago the poop starting filling up.

I cannot poop.

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