Grieving for my Pre-UC Life
I think about the emotional journey we go through after being diagnosed 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 is no time limit on how much time can be spent in each phase. I guess multiple factors will influence it, such as personality type and disease progression. This is what my journey looked like.
Shock and denial when diagnosed with UC
Once diagnosed, it’s common to feel relieved because you finally have a name to put to the thing that has been torturing you. The hospital gave me an information pack, and I believed that my life wouldn’t change much, 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, I was still 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 I wanted to talk about my ulcerative colitis, because of course, in my head, it wasn’t going to make any difference to my life. That’s how isolation begins; not talking about an issue.
Uncomfortable and tired from UC
I had tried to continue as normal, but, it wasn’t long before UC returned in my rectal stump. I was living in discomfort, extremely tired 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 J-pouch built. The discussion with the surgeon had highlighted the surgery's effect on my fertility, and that was the only thing I acknowledged as being something that could impact me long-term. My J-pouch became inflamed before it was even connected, so again, I ended up administering foam enemas at night. A year after it had been built, it was finally connected. I felt like me again, now the bag had gone, and I was still very adamant that this was going to be me being back to normal; just pooping a few more times a day than everyone else.
Dealing with anger, guilt, bargaining, and 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. Now, 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.
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 frantically sought advice from other patients, looking for other treatment options that may help me.
Acceptance and connecting with others
It was talking to other people that had been through similar things that pulled me out of my angry, frustrated and sad phase because 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 effectively with my healthcare team.
Rather than focusing on all of the things I felt like I had lost or couldn’t do, I started focusing on ways to adapt and prepare for negative situations. I stopped grieving for my old life and accepted the life and limitations I did have and concentrated on making the best of it.
Does exercising regularly help in the management of your symptoms?