What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

The emotional impact of surgery

I’ve never really felt any emotion about actually needing to have surgery. To me, it’s one of those things that has to be done, so it's going to be. I don’t feel scared, or worried, or upset, or anxious. I just want it done so I can carry on with life. That said, there are emotions about other things relating to surgery.

Even my first surgery, which was an emergency just one week after being diagnosed with UC and admitted via A&E, didn’t worry me. I didn’t even know what an ostomy bag looked like at that point, but the pain being gone was the ONLY thing I thought about. I’d never had more than a cold, and in the few weeks prior I had felt pain that I couldn’t even have imagined was possible before that.

I did have some emotion about Jpouch surgery, but that wasn’t directly related to the actual surgery, but because of its affect on my fertility. I was extremely upset for a time and felt like not being able to conceive naturally made me worthless, because scientifically speaking, the only reason men and women exist separately in nature, is to procreate. My purpose on earth was to carry a child, and without that capability, I had no purpose. Counselling eventually fixed me, so here I am, with a new purpose – to help others through their IBD journeys.

3 of my surgeries were planned and 3 I found out about just a few days in advance. I need organisation and a plan, or I feel out of control, and I hate feeling like that. My thoughts are always focused on what I need to organise, save and buy, so that nothing is left for others to sort, and so that I do not have to depend on other people or worry about things not getting done, or not getting done properly (by properly, I obviously mean the way I would have done them). It is the way I approach everything in my life. I just get on with things, because the alternative is NOT getting on with things, and that’s not really an alternative at all.

I actually don’t like the fact that I don’t have any emotion about upcoming surgeries. It means I struggle to relate to those I try to support. It’s a big thing to happen in a person’s life, and it seems normal to be anxious, worried, and even scared about it.
Unfortunately, I don’t make it through the entire surgery journey without any emotion. After the surgery is a nightmare, and I avoid contact with people as much as possible for the first few weeks because I am generally irritated and not willing to deal with anything, including people and conversations.

I’ve made it through surgery with no post-op complications only once, so things like not being allowed to eat and needing an NG tube to prevent straining my stomach while vomiting is a source of great anger and frustration. 

When I get home, I don’t cope well with feeling useless or accepting help, so I get incredibly impatient and frustrated, and often cry a lot. I just have to keep reminding myself that this will be over before I know it. It is a temporary nuisance which will reap many benefits long-term.
Then, it IS over, and I’m recovered, and I finally feel relief!

I have come to the realisation whilst writing this, that I actually DO have emotion about this surgery, and that emotion is excitement!