The truth is I’m tired. No, not because I am up partying. At my age as if!!! I’m tired of always feeling like a patient. I am tired of over 30 years of being ill. Crohn’s Disease, Intestinal Failure and then of course a bowel transplant. The reality is that I know that I am no different to so many people coping with a long term condition. Whilst I inevitably spend a lot of time listening, talk too and engaging with IBD patients the wonderful thing about social media is that you get to chat to patients with so many different conditions. There is without doubt a single common thread. The mental challenge – sounds like it should be the title of a game show but actually for me and many others it is undeniably the toughest thing patients have to cope with.
A fellow Crohnie and friend Lance Robbins talks to me regularly about how many IBD discussions occurring on line centre on how patients of all ages and backgrounds cope mentally. For me personally I have never been offered support for the mental side of coping with my conditions. Like others with differing conditions I live with knowing that the consequences of things going wrong can lead to me dying. I know that if my bowel rejects I can go downhill with severe repercussions very quickly. To be honest that is fine most of the time but on odd occasions that weighs very heavily. What is very clear is how little psychological support there is for many patients dealing with the physical challenges associated with all sorts of long term conditions. This may sound controversial but in my opinion just because you are diagnosed with a physical condition it does not mean that there are not mental challenges and consequences. Psychological support should be part of the treatment plan for all long term patients.
As you know a month ago I underwent another surgery. Known as a G.J. Anastomosis or Gastrojejunostomy I now have two loops of bowel connected up to the top of the stomach to enable food and drink to drain in to the bowel directly. Straight after surgery I went in to a form of sceptic shock that took a few hours to sort out and I am not sure if that made the next few days tougher or whether it was just me. Waking up with drains, another NG tube (which if you are reading this Anil it was more like an inner tube) and just feeling completely out of it was blooming hard. I am not ashamed to say that for the first 4/5 days I really felt sorry for myself. I tried hard to be positive and to keep smiling but mentally I was back on that roller coaster. I am no different to so many other patients and in a sense I feel it is unfair to highlight my own woes. Then again it’s my blog so I can.
What made it tougher for me was that the operation was relatively uncommon for a bowel transplant patient and therefore there were issues over drains and what tubes to be fed through. It led to my surgeon drawing this and sticking it on the wall in my room.
In a bizarre way putting this picture up helped me mentally. I knew that he was taking control. He was very concerned that things could be missed. So he put his mobile number up on the wall for nurses to call at any time.
Maria Diakos, a truly wonderful long term patient, founded a fantastic linkedIn group called Professionals with Crohn’s. In it every aspect of coping with Crohn’s is explored with a recent post simply entitled “what is your biggest challenge?” Aside from side effects of medications the topics of stress, depression, and embarrassment were raised. This group, like so many, thrives on peer to peer interaction and support. So often it is fellow patients who effectively take on the role of providing the mental support. Most of us are not trained so we share our experiences, empathise with what people are going through but ultimately often fall short in being able to provide the physiological help that is really needed.
In the current health climate where buzz words like health self-management and remote access monitoring are key perhaps we need to think about all the tools that patients need to be able to achieve those goals. Perhaps we need to look deeper than just physical wounds. I am not ashamed to share how tough it is staying positive when actually all you want to do is curl up in a ball and hide. I know that I am not alone.
Till next time