(Updated to mark the 41st anniversary of my diagnosis)
Having read a good number of tweets and forum posts I’ve come to realise my level of ignorance. I wonder how many facts about IBD, that are blindingly obvious to others, have simply passed me by or if the various consultants that I have seen over the years haven’t thought it necessary to discuss because they assumed I already knew them.
You may be surprised at my level of ignorance, as I reach 41 years of of being diagnosed with Crohn’s, but I have excuses. Firstly, with no internet for many of those years there was little opportunity for sharing experiences and knowledge so easily. Secondly, during the long period when Crohn’s was pretty much under control, I really didn’t need or want to think about it too deeply. Ignorance genuinely was bliss.
There are some things I wish I had discovered/been told about sooner. Forewarned is forearmed. It’s just possible that they might help someone in a similar situation to myself.
What I’d Like To Share (WILTS) and apologies if they are blindingly obvious :
1) We’re all different. Probably the most important thing I have learnt from posts and tweets is that whilst there are some common threads, such as fatigue, it is amazing just how different each of our overall experiences of Crohn’s can be. I knew it could affect any area from mouth to anus but it wasn’t until I had read other patient’s stories that I realised just how debilitating and disruptive it can be both physically and, just as importantly, mentally. My own experience, up until 2009, was that it was unpleasant and annoying but didn’t affect my lifestyle very much. Taking everything into consideration I’ve escaped pretty lightly.
I wasn’t aware that bad fatigue is so common. It’s only in the last few years I have been having B12 injections to try and help with this.
I knew surgery was a possibility but not that some patients would have their complete colon removed……the list goes on…….
WILTS – especially for the newly diagnosed – if you are reading forum posts etc. then please remember that whilst there are some effects we all suffer from – fatigue, for instance – other symptoms or reactions to drugs will be specific to that particular patient and it doesn’t mean you will necessarily experience the same. By the nature of forums people post questions usually when they have a problem, not when they are feeling great. If you keep that in mind then you’ll understand why forums are heavily skewed to the negative end of the scale. I can’t remember how I felt when I was told “you have Crohn’s Disease” but I would imagine that nowadays, for the newly diagnosed, the amount of information on the internet is overwhelming.
2) Stomas. Not something I had even thought about as a possibility. In fact something I didn’t want to think about at all, let alone how to deal with one. Definitely a lot of stigma attached and only something that affected “old people”.
Reality didn’t kick in until I had my first meeting with a Stoma nurse (the lovely Fiona at St.Thomas’) who marked a large, black cross on my abdomen so the surgeon knew the optimal position “if a stoma was required“. At that point I couldn’t ignore it any longer and the doubts began.
After the operation the surgeon’s first word was “Sorry” and I knew when he lifted the blanket what I would see attched to my abdomen. I was so high on all the drugs at that point that I just took it all in without reacting. Over the course of the next few days Fiona showed me what I needed to do to change the bag and built up my confidence for “going solo”. She told me that, at 54, I was one of her older patients. So much for stomas only happen to oldies.
I can’t mention stomas without also mentioning the #Get Your BellyOut campaign. They have really helped with getting stomas out in the open, literally, and lifting some of the stigma attached.
WILTS – the thought of having to have a stoma is a lot worse than the reality. Once you get into the routine of dealing with it, it can give you a lot more confidence going out and about and not having to worry about dashing off to the nearest bathroom IMMEDIATELY. A real life changer in a positive way. If you have any problems (and I had a couple) your stoma nurse will know what to do. Stoma nurses are heroes.
3) Lockdown. Before my elective surgery in October 2010 I had a meeting with the Enhanced Recovery Nurse who she went through the pre and post operative phases in great detail – what I should expect, timescales etc. The one thing that wasn’t mentioned was “lockdown”. At least that’s what the surgeon called it. The medical term is “gastric statis” or “post operative ileus”.
After both the ileostomy and reversal operations my digestive system stopped working and I suffered very bad nausea and hiccups. I hadn’t realised just how low nausea can make you feel. It wasn’t until the surgeon was doing his weekly “follow-up” round that he explained it was normal in approximately 25% of patients and it would eventually pass. I wish I had been forewarned so at least I would have known why I felt so bad straightaway rather than wait a few days before having it explained.
WILTS – if you end up having surgery for your Crohn’s (and it is by no means certain that you will) then you may be one of the unlucky 25% to suffer from this “lockdown”. It is unpleasant, very unpleasant, but it’s made a lot easier if you know why you feel bad and that you are not the first to have suffered it. The preferred option is to let natue run its course but there ae things that can be done to try an alleviate the problem. One way or another the feeling WILL pass and your appetite WILL return.
4) BAM – Bile Acid Malabsorption. I’m probably starting to sound like a cracked record on this one (see several other posts). It does appear to be a condition that should be far more widely known about and discussed. After I had my stoma reversed I couldn’t understand why I still needed to take Loperamide capsules to regulate output. I had assumed, wrongly in my case, that reversal meant the digestive system returned to normal. Every so often I would get a bout of the runs and my first thought was it must be the beginning of a Crohn’s flare; mayve I’ve eaten something that diasgreed with me; or could I have picked up a virus? I asked my consultant about it a couple of times and he mentioned something to do with absorption. As an extra capsule of Loperamide would quickly bring it under control I took it no further.
I mentioned it to him again earlier in 2014 and he decided to book a SeHCAT test. The result came back – severe Bile Acid Malabsorption. Having now got the proper term for the problem I was able to look it up and understand what was going wrong. I’ve explained it in another posts so won’t cover old ground here.
WILTS – if you have had surgery that involved removing your terminal ileum then, from what I have read, it is highly likely you will suffer from BAM and unless you are taking medication to combat it, or its side effects, you will be making frequent bathroom dashes. If you haven’t discussed it with your consultant then ask the question. The SeHCAT test is simple and painless.