I think of the emotional journey we go through after being diagnosed with IBD like the stages of grief; shock, denial, anger, bargaining, guilt, depression, and acceptance.

They do not have to be experienced in that order, and there’s no time limit for how long we spend in each phase. In fact, experiencing a flare after a period of remission can throw us right back into a stage we thought we’d come through. Multiple factors will influence the journey, such as our support system, personality type, and disease progression rate. This is what my journey looked like.

Shock. Denial.

Once diagnosed, it’s common to feel relieved because you finally have a name for the thing that has been torturing you. We assume that knowing what it is means that we’ll get treatment and it will go away. The hospital gave me an information pack, and I believed that my life wouldn’t change much based on the information inside it. It told me that with the right medication and possibly a few dietary changes, all would be well. So, it was easy to be hopeful at that point. I believed that just popping a few pills every morning would have me back to normal in no time.

Even when my colon was removed a few days later, I remained in denial about the impact that would have on my life. I can now see that I was desperately clinging to that hope of my life not being any different. Because of that hope, I didn’t feel like I wanted, or needed, to talk about my ulcerative colitis (UC). In my head, life would continue as normal. Not talking about an issue is how isolation begins…

I tried to continue as usual, but, it wasn’t long before UC returned in my rectal stump. I was living in discomfort, extremely fatigued, and administering foam enemas every night. Still, I was not willing to admit that my health was going to be anything more than a short-term problem. 

One year after the initial surgery, I had a Jpouch built. The discussion with the surgeon had highlighted the surgery’s impact on my fertility, and that was the only thing I acknowledged as being something that could affect me long-term. 

My Jpouch became inflamed before it was even connected, so again, I ended up administering foam enemas every night. A year after it had been built, it was finally connected. I felt like me again once the ileostomy was gone. I was still adamant that things were now back to normal; just pooping a few more times a day than everyone else.

Anger. Guilt. Bargaining. Depression.

Before long, pouchitis reared its ugly head. It was an ongoing battle, trying multiple treatments that didn’t work or that I became resistant to. Suddenly, I really did feel like a sick person, and that made me angry. Desperate to feel better, I was constantly looking at my lifestyle, and for things to change. I believed that there must be something I could do to make me feel better, which also meant that I believed I must have caused my disease in the first place.

Nothing helped. I felt powerless. Desperate. Depressed.

It was that anger and frustration that led me to the online community. I started raising awareness because I was angry that no one understood how unwell I was because I looked OK on the outside. I franticly sought advice from other people with pouchitis, looking for other treatment options that may help me.

Acceptance.

It was talking to other people that had been through similar things that pulled me out of my angry, frustrated, and miserable phase. I suddenly felt less alone. I felt inspired and empowered and ready to fight some more. I started to educate myself as much as I could about my disease, and that helped me communicate more effectively with my IBD team.

Rather than focusing on all of the things I felt like I’d lost or couldn’t do, I started focusing on ways to adapt and prepare for life ahead. I stopped grieving for my old life and concentrated on making the best of my life to come.

I’m not claiming that it’s all been smooth sailing from there. It hasn’t. I’ve needed three more bowel surgeries, two of which resulted in an ileostomy. The stoma I have now is permanent, and that was a whole other journey of acceptance in itself.

I’ve visited anger and depression a fair few times, but I feel like I’m well-practiced at getting to the acceptance part now, which means I can get there much faster. If that’s not something to be thankful for, I don’t know what is!