Me & My Crohns

So last time I had a cold and guess what? This time I still have a bit of a cold. I’m still coughing quite a bit and sound very nasal with a blocked nose. It’s difficult to tell if the cold is sticking around due to the Infliximab has lowering my immune system or if it’s just a rubbish cold. My wife has had a similar experience with her cold, so I guess it might just be a rubbish, dragged out cold.

Other than the stupid cold, I have been pretty well. The Infliximab seems to be keeping the Crohn’s symptoms under control. It is about 4 weeks until I have the first Humira jab and I’m now almost looking forward to it. I had an email from a reader of this blog and she told me how well she is doing on Humira. She has experienced no side effects and it is having a good effect on suppressing the Crohn’s. She had similar side effects as me when she was on Infliximab so her Doc moved her to Humira. This helped relax my mind a little. If you do some internet reading on Humira, it does appear to be working well, with fewer side effects compared to Infliximab. Humira is pretty much my last hope until the next generation of medication is released. My Doc said there is an Anti-TNF style pill being developed. This will be taken orally. That sounds much better than refrigerated injections that you have poke through your skin every 2 weeks. Until that becomes available though, Humira is the only option left to help stay Crohn’s free. A good diet helps keep symptoms to a minimum, but sometimes it just isn’t enough.

Before I go I want to share a fear I have. It’s a fear that most of us “Crohnies” have. Using a loo in a public place, especially when you are desperate and especially when in a pub. I don’t know what ladies toilets are like, but men are pretty useless when it comes to lifting the seat, so before any toilet action can happen you have to wipe the seat and possibly the floor around the toilet so that your trousers don’t get wet. You do all this whilst so desperate to use the damn loo your jumping around and squirmy, trying to avoid an accident. Then you find out that the door doesn’t lock and there is only one sheet of tissue paper left (you were over careful when wiping the seat that you used a lot of extra tissue to avoid any wee to hand contact). It’s too late to find a different location, its now, in this toilet or 30 seconds in your trousers! You sit in fear that someone will walk in on you, your trousers are soaking up another man’s attempt at peeing in the bowl and fear that the one piece of toilet tissue clutched in your hand will not be enough. But you succeed, nobody comes in, the tissue was more than enough and your trousers are nearly all wee free. You make your way to the soap dispenser only to find it has been knocked off the wall by some drunken fool and has not been replaced yet, not even with a manky, over used bar of soap. You scrub your hands as best you can with only water. The hand dryer is broken, there are no paper towels and your trousers are the only thing available. So you exit the toilet feeling like everyone must be aware that you have been ages. Your conscious that you may smell of wee and your hands are not sanitised. I don’t think anyone actually noticed or particularly cared. But I always think people are judging me. I just want to tell everyone I have a disease which means I need the loo desperately and it would be made easier if you could all please lift the seat and try your best to hit the target. Could you only use the toilet roll when required, not just to try and block the only working loo left in the pub for a bit of a laugh. But what can you do at midnight when everyone is drunk and you probably couldn’t form a structured sentence if you tried because you are on your second long island iced tea. You would think by now I would carry sanitising gel and extra tissues, but I don’t. I guess what I’m trying to say is, we shouldn’t be embarrassed about our disease, but we should be more prepared. I’m going to make an effort to carry a pack of tissues and possible a handy wipe from KFC to clean my hands.

Send me your embarrassing stories. It’s good to get them out in the open. Let people know that they are not alone in this mine field of a disease with uneducated people around us making it much harder. (I won’t print your name if you don’t want me to, in fact the above story was about a guy called, erm, James it was not about me, honestly)