UC and Chronic Pain

As I'm sure you all know by now, ulcerative colitis (UC) symptoms can vary from person to person. Unfortunately, that's the nature of the disease – our symptoms differ, our tolerances differ, and the treatments that help alleviate our symptoms differ. This is what makes living with and being treated for UC so complex!

My chronic pain has been constant

For me, pain has been a chronic symptom since the very start of my ulcerative colitis journey. Then, in 2018, I was diagnosed with secondary fibromyalgia.

Fibromyalgia is a chronic pain condition. What makes fibromyalgia secondary rather than primary is the link to my underlying chronic health condition, UC. One theory behind secondary fibromyalgia is that chronic pain changes the brain and central nervous system and leads to central sensitization. As a result, the body overreacts to pain and other stimuli (noise, smell, bright lights, etc.).¹

After 2 weeks of this, plus the additional symptoms of blood and mucous filled diarrhoea, I ended up in the hospital's emergency department. I was an in-patient soon after. You might imagine that I was scared or worried when I was told less than a week later that my colon needed to come out. In reality, I was just so desperate for the pain to stop, that was all I was thinking about!

More pain followed

Not long after recovering from that surgery, UC flared in the remaining rectum. This is called proctitis. The fact it was isolated did not make it less painful!

Cramping and shooting pains continually travelled up my rectum, and mucous and blood were passed regularly. I had some foam enemas which helped clear it up, but I wasn't able to stop using them or it came back. My rectum was eventually removed and a J-pouch was created.

Pouchitis, cuffitis, and flares

When my J-pouch was connected up and my stoma was reversed, I had a period of remission before pouchitis flares started happening. These weren't generally as painful as that initial UC flare had been, but they were very uncomfortable.

I experienced a constant dull ache and soreness in my lower abdomen. I could tell it was inflamed because I could feel the J-pouch move with every footstep I took. The pain would worsen if I ate or drank the wrong thing. I also experienced cuffitis (inflammation of the rectal cuff), which felt the same as the proctitis had previously. I was flaring more than I was in remission, and I was so sick of pain...

My UC pain increased over time

The chronic pain changed and got worse over time, which I repeatedly reported to my IBD nurse. There were 2 specific spots, which I knew were above my J-pouch, higher up in my small intestine. My IBD nurse thought it was probably IBS, or psychosomatic (caused or made worse by mental factors).

But they kept getting worse. It was a really intense cramping – almost stabbing pain. The only thing I can liken the pain to at this point is an intestinal blockage/obstruction. The pain medication I was prescribed kept getting stronger and stronger, and I was still dealing with breakthrough pain which kept me awake at night whilst I waited to be able to take my next dose. It was the kind of pain that makes it impossible to stand upright, so I was often late for work because I had to wait for the pain medication to kick in enough to be able to walk.

The cause of the pain was identified

Eventually, after a failed scope of my J-pouch due to a stricture (narrowing), further tests were done. Two strictures were identified, right where I had said the pain was. I needed surgery, urgently, because they were too narrow to attempt a dilation. Five days later, I was under the knife again.

One of the narrowings turned out to be an abscess and the other was a twist in the intestine leading up to the J-pouch. The relief when they were gone was incredible!

No longer dealing with constant intestinal pain

My J-pouch was ultimately removed because I ran out of medication options. I've found some relief, so I no longer have to live with constant aches and soreness.

When it comes to my bowel, the only pain I experience now is when I have blockages, trapped wind, or I've eaten the wrong thing. I'm not saying that doesn't happen often, but it's pain that I know will pass. Mentally, that's makes a lot of difference.

Always adapting with UC

Of course, I am still living with secondary fibromyalgia, so my body is by no means pain-free. It has forced me to change my lifestyle, but in reality, the changes have been positive ones. I focus much more on my mental wellbeing now.

I exercise, eat as healthily as is possible for me, stay hydrated, rest when I need to, and I listen to my body. I have adapted. Throughout all of it, I've had to adapt to new situations and scenarios that I could never even have imagined pre-UC. None of it seemed optional, it was simply a necessity to find a way forward. Isn't that the best any of us can ever do?