UC Regrets and the Negative Impacts on My Health

I have a lot of regrets when I look back on the journey my ulcerative colitis has taken. I can see many times when I should have done things differently. When my own actions have negatively impacted my health.

Trying to control what I can with UC

I have tried to control many aspects of my disease. My stress levels, for example, and what I eat are the main two. I wanted to do everything within my power to prevent it from being worse than it already was. I never succeeded!

Managing stress is so hard. I am a stressy person in general, and I acknowledge that, which I think is at least a start! Food is something that has caused issues for me a lot, but it’s been for a different reason at different times. There’s never been anything that would take me from remission and into a flare, just foods that caused pain because of things like strictures or active disease, or caused more frequent and urgent toilet visits.

The thing that I couldn’t control was my mind and my thoughts. One particular time always sticks in my mind. At the time, I genuinely didn’t realise that I was taking the wrong path. Let me tell you a little bit more about it.

Youre in pain? Deal with it

I’ve had a number of bowel surgeries. My colon was removed in 2007, and I had a J-pouch created in 2008, which was connected up in 2009. I’d had pouchitis frequently, so in 2012, when I started experiencing pain much higher up, I believed the pain was in my small intestine. I did tell my IBD nurse about it, but the response was basically that it may just be something I had to live with, or that I may have IBS too. End of conversation.

So, with that in mind, I thought I would just have to put up and shut up. I dealt with the pain with pain medication and got on with my life the best I could. The fact was, I had a house and four dogs to keep. I needed to work, so that was my only goal every day. Earn money.

The pain gradually worsened, so I went to see my GP who prescribed different pain medication. This happened a few times, and I was always made to feel like I was just seeking a high when I requested something stronger.

My UC pain wasn't taken seriously

On one occasion, the GP questioned me: "How much do you want these?" I thought it was an oddly phrased question, so I replied that I didn’t want them. I didn’t want to need pain relief to function. But, the situation for me was simple. I DID need to be able to get out of bed and make it to work, and ideally, I’d like to total more than 3 hours of sleep at night...

I mentioned the pain every time I saw my IBD nurse, but it was never taken seriously. It was only because I needed a pouchoscopy before I would be able to access Infliximab for a flare of pouchitis, that anything was ever discovered. A stricture was identified, too tight for the camera to make it through.

Following this, I was referred to a different hospital to see a consultant about dilating them. They did a barium enema X-ray, and I got a letter to say that I had two very tight strictures. That was it. I called the consultant’s receptionist who told me that my case was due to be discussed on the 9th, so I would get a call on the 10th. I was actually called on the 9th, straight after the meeting, and was told that I needed emergency surgery. He had booked me in, in just 6 days time, but I had to go in in 5 days to have all of the pre-op stuff done in advance.

I didn't see surgery coming

I’d gone from thinking it was going to be a simple dilation to surgery so fast, I didn’t see it coming. I was a little relieved that the pain I had been experiencing wasn’t in my head, but I’d never believed it was bad enough for me to be needing surgery. Especially not emergency surgery.

It had never occurred to me that the amount of pain I was in should actually have taken me to A&E (or the "ER" as it's called in the U.S.). After all, my IBD nurse's words and lack of concern had made me think that what I was experiencing was just part of life with IBD. The GP continuing to issue stronger pain medication further backed that up in my mind.

The surgeon said he couldn’t believe I’d even been able to stand with my insides the way they were. I shouldn’t have been able to. I wouldn’t have been able to if I’d not been prescribed the pain medications that I was.

Looking back, I know I would have told someone else that they need to go to the hospital if they’ve been experiencing the amount of pain I was. But, I’d had such a traumatising experience the first few times I’d had surgery, I avoided it at all costs. I don’t think I realised just how determined I was to stay out of the hospital on a subconscious level.

I regret not going to the hospital earlier

That determination, and that fear, led to me being in a lot of pain and missing out on my life for over two years. If I’d gone to A&E, they would probably have done some tests and seen the strictures. I’d have had surgery much sooner. I wouldn’t have lost two years that I can never go back!

Even though I recognise that now, I’ve still stayed at home dealing with blockages for a lot longer than I’d ever recommend anyone else do. It’s difficult to admit that as an advocate. I’m obviously a “do as I say and not as I do” type of person. The scars from my past have damaged me psychologically, and I don’t know how to get past that.

Yes, I regret it, but I’m pretty certain I’ll do it again.