My UC Pain Is Real! Fighting To Be Heard by Our Doctors

I regularly find myself "nagging" at people because they're suffering, but not contacting their healthcare professionals (HCPs). Often using reasons such as work or other commitments. Lots of us don't feel like we have time to be sick! As long as we can plod on, we do!

When our doctors don't listen

Many of us also don't want to start the back and forth of fighting to be heard. We know that it's usually not just one appointment and some answers. It's multiple appointments, often trying to make HCPs believe how unwell we are because our blood and calprotectin are "within normal range."

That's often a learnt expectation based on previous experiences. Even if they immediately say, "OK. Let’s check where we're at," that means tests, waiting for the tests, and waiting for results.

I VERY frequently hear: "My doctors aren't listening to me."

As if ulcerative colitis isn't exhausting enough

The mere thought of having to fight to be heard is exhausting. When you're already unwell, struggling to stay on top of work and home life, the very last thing you want to do is use the minimal energy you have arguing with doctors.

We might not even contact them. We might contact them but come away feeling like our current state isn't being taken seriously. We feel deflated, and we give up. We stay stuck, and unwell, often getting progressively worse. Then, it's even harder to find the motivation to contact them or to stand our ground.

Avoiding the doctor

I have been there, on more than one occasion with my UC. I have told myself that I can just edit my diet and get more rest, and all will be well. I have told myself that I will do it when I have wrapped up the project I am currently working on, or when work slows down. I have come away from appointments not feeling heard, and like I'm just going to be left to deal with it, and told myself I will try again and be more firm tomorrow.

Always tomorrow. But, tomorrow never comes.

When my doctors didn't listen to my pain

One example is when I was experiencing pain in my lower left side. I'd been diagnosed with ulcerative colitis and I'd had my colon removed, and was using a j-pouch. What was even in my lower left side? Had some small bowel ended up there? Did I have Crohn's disease? I didn't know. I DID know that the pain was above my j-pouch. I DID know that it wasn't pouchitis. I DID know that I wanted answers.

My IBD team didn't seem to think my pain was a problem. I was treated for pouchitis multiple times, and as I suspected, the pouchitis and the pain weren't linked. After mentioning it for the third time, my IBD nurse made a few suggestions:

• Maybe it's psychosomatic.
• Maybe it's something you just have to live with now.

No answers, more ulcerative colitis pain

I'd had 4 surgeries at that point. I'd been through a lot for my young years, and I always remained hopeful that the next treatment or the next surgery would be the end of my pain. The end of having to live on pain meds. I didn't know what to do. I basically accepted that the pain was going to be part of my life.

The pain got increasingly worse, and my pain medication got increasingly stronger. The meds I needed just to be able to get some sleep and stand upright were scary. I was wearing pain patches and still needed to take painkillers around the clock.

Then emergency UC surgery

During a scope, which was needed to confirm active pouchitis so that I could start a biologic, they found a narrowing that the camera couldn't get through. Further testing led to emergency surgery. The surgeon removed an abscess and untwisted my intestine. He couldn't believe I'd been able to walk around with my insides in that state.

If I hadn't backed down, if I'd pushed for more tests when I first thought there was more to it, those couple of torturous years wouldn't have happened. I hadn't been confident enough.

I no longer back down with my UC doctors

I no longer take no for an answer. I know my body better than anyone else. I live in it! If I have tests, and no one contacts me with results within the given timeframe, I'm on the phone the next day. If I feel ignored, I will pester until someone listens.

I'm not afraid to ask for a second opinion, a referral to another hospital, and most importantly, I'm not afraid to ask for clarity if I don't understand something. Nobody cares about my health as much as I do. Nobody will fight my corner as hard as I will.

I also know how quickly disease can progress. My very first UC flare went from initial symptoms to surgery within three weeks. People "putting off" contacting their team scares me. It scares me to think that a delay could mean they need emergency surgery because they're beyond treatment.

Your health is what's at stake

I am with every single person that thinks that they shouldn't have to fight to be heard. Really, I am. It shouldn't be that way, but it often is. We can't change that, but we can change how we deal with it.

Believe me when I say I know how frustrating and exhausting it is when you already feel unwell. How much you don't want to. How much you want to stamp your feet, get back under the bed covers and cry because you don't have the energy to deal with this right now! But, it is worth it! YOU are worth it.