Why is it whenever you’re in a rush to get anywhere, all of a sudden you have to leg it to the bathroom? It seems like for as long as I can remember now, there has been this joke played on me by my bowel.
I never seem to have a problem when I have all the time in the world, but as soon as I’m in a rush, “grumble, grumble, panic!”. Maybe I’m late for work or just about to go live on my radio show; then Bang! I get that feeling of utter panic. That split second when you are unsure whether it is gas or an actual need for the loo. Then the dangerous sprint begins. You can’t run too quickly, else an accident might happen but you can’t dither about either, else an accident might happen. You do those gentle steps with a long stride. Softly placing each foot, but taking double length steps.
I don’t know about you, but when I get the urgency feeling arising low in my gut and I’m about to begin my sprint to the loo I make sure I grab my iPhone. I can’t remember what it’s like not to have my iPhone with me. You never know how long each “loo break” will be, so entertainment is a requirement. I often think about putting reading material in there, but it looks untidy so I talk myself out of it. Maybe I could put a magazine rack somewhere on my route to the loo. I guess the problem with relying on magazines is you have to be using your loo at home whereas with my iPhone, I have a wealth of games, music, and news in my pocket. If I’m having a particularly bad day I can watch a TV show. My favourite pass time is Angry Birds. It’s such an addictive game.
I was caught out so many times around the time I was diagnosed with Crohn’s Disease. You think you are safe, but you’re not and like that, you are in a mess on your way to work. You then have to try and deal with the unfortunate accident without anyone knowing. You feel so ashamed. This is what babies and pensioners do isn’t it? Not a guy in his 20’s. I now make sure I have a plastic bag and a spare pair of pants with me most of the time. It is still embarrassing though and probably one of the subjects I discuss least with my family and friends. It is, however, a topic that arises a lot with my Crohnie friends, but they understand. They get what you’re feeling. I guess it’s the same with the whole disease. They know firsthand what you’re going through.
To be fair though, I think I’m quite lucky. I have had much fewer accidents over the past year or so. I don’t know if this is due to an improvement in health (Doesn’t feel like it) or a better understanding of my body. I still prepare for these accidents but generally I am on top of it before it happens. I think I have become a Crohn’s Psychic, knowing when bad things are going to happen. Well, I say I don’t have many accidents nowadays, but I do quite frequently have a panic situation. That single moment where you think you’ve let out a small bit of wind but in your mind you are not sure. You think it felt like more. Generally I’m just over reacting and over thinking the situation. Im scared of what’s happened in the past.
I’d love to know if you have any rituals you do before hitting the loo. Do you take a certain book, magazine, gadget? Or am I just a bit weird? I often find myself praying to a God I don’t actually believe in. Just wishing and hoping I could be normal, even for just a week. I’d appreciate it so much.
Before I go; did any of you watch the Comic Relief show on Friday night? The first film they showed was a lady who suffered with Crohn’s Disease and had to be looked after by her daughter. It was a very moving bit of film and bought actual tears to my eyes. The daughter was so loving and caring. She looked after the house and helped her mum with her feeding tubes. The mum appreciated it all but you could see she knew the roles were the wrong way around. The appeal was to help carers get a little break from their daily routines but for the BBC to run their appeal with a Crohn’s Disease story was incredible. It reached millions of people who may have never known Crohn’s Disease existed or could be that bad. A lot of people associate Crohn’s Disease with a bit of tummy ache, but as we all know it is unfortunately much more.
It just goes to show that the media are becoming more aware of the disease. The more coverage we get, then the ore people will understand and may even help us more.
I heard a story the other day of a girl who was being bullied at school for having Crohn’s Disease. She had a pouch and the other kids thought this was funny. We need to educate these children and make them understand that this isn’t a laugh; it is a lifelong battle. Would they pick on other chronic illnesses, maybe? It’s all about the knowledge they have. Children are scared of what they don’t know or don’t understand. I guess adults are the same but maybe they develop some social awareness that stop them being openly mean.
More media coverage is great news. Finally the Taboo about “bums”, “bottoms”, “Farts” and “poop” can be lifted. Out of the shadows and into the mainstream we will walk with our heads high.
Take crae
Ben x
P.s I am still on the Mercaptopurine (6Mcap) pills. My dose was upped to the maximum my body size would allow. I think it is working a little but t has not eradicated the symptoms fully. At my last consultation they talked about returning to biologicals (Infliximab or Humira) but they are unsure at the minute.
My vitamin D levels were still very low and causing massive pains and aches in my joints. My Vit D supplements seem to be finally kicking in as my joints have behaved themselves over the past week or 2. It just goes to show that the Crohn’s Disease doesn’t just make the bowel a bit poorly, it affects your whole body.
I’m in good spirits though, which certainly helps. x
March 21st, 2011 08:38
Hi Ben,
Your blog made me laugh so loud this morning. I was reading it on my iPhone on the toilet ha ha! I always make sure I have it with me when I go! I’m sure my husband sometimes wonders why I feel the need to not go alone, especially if I’m there only 2 minutes but like you say, you just never know. I also have a bookshelf in here and a magazine rack. But usually I’ve read the mags and newspapers. Not sure if you’ve seen them but the ‘quick read’ books are quite good to have in here. Not too long and not too taxing but entertaining non the less!
I also saw the vt on comic relief and was so pleased. My daughters had to miss brownies last week as I was just too tired to drive, I felt so guilty because they still don’t 100% understand. They were watching comic relief too and I think it helped them realise how poorly we can get. I haven’t been bad for nearly 3 years now and I’m not sure they remember. It’s good to have more coverage.
Hope your keeping well
Karen
March 21st, 2011 23:01
Hi Karen
In a way, im so happy you read this whilst in the loo.
My wife thinks it’s crazy that I take my phone to the loo, Im sure she thinks I have another woman!
Not sure I do know the “Quick read” books. Ill have a look out for them
Take care
Ben x
March 22nd, 2011 09:31
Hi Ben,
As always I love reading your blog. I know exactly what you mean I used to carry a spare pair of knickers everywhere I went (which can be a bit hard when going somewhere with the tiniest hand bag lol). I am totally with you regarding the iphone, and Karen my husband gives me weird looks and almost always asks why I need it in there. But he knows how long I can spend in there on the bad days. I have my iphone loaded up with books, tv shows and uni readings, I think that I’ve read a majority of the classics whilst I’ve been on the loo.
It is always good to know I’m not the only one carrying my iphone in there. Although it does suck that any of us have to.
Thanks again for your blog Ben, please keep it up
Heather xx
March 23rd, 2011 18:13
Hi Ben
You are so right! Jazz will run past me 100 miles an hour and then in 15-20/30 minutes my phone will ring and it will be Jazz telling me she is on the loo and whats for tea? With or without Crohns Boggle is another good one for the loo, me and Jazz are both addicted.
We watched the Comic Relief but Jazz was really upset by it. She asked if thats how she will end up? Humira is good for Jazz seems to have sorted the Crohns but Jazz has all the other side effects and still sooooo tired. Hey ho tho we do our absolute best to keep a smile on our face and while you are writing your fantastically funny blog we can laugh out loud. Take care and bye4now
March 24th, 2011 10:56
Hi ben,
.
Im currently undergoing investigation as to what is wrong with me, there sure its Crohns disease but had to have a lot of tests, had the last one last week.
I saw the women on comic relif and now im pretty scared to be honest, i really dont want to end up like that, im only 18 years old.
I do the same thing as you, make sure ive got a gadget , made me laugh when i read it
Ive been put on steroids to try and help me though, but still have problems, get back to me if you can.
Take care
xx
March 24th, 2011 12:48
I’ll have a look for Boggle. Been getting some lovely comments from readers and some helpful hints on what to occupy the time whilst sitting on the loo.
I hope you and Jazz understand that the lady on Comic Relief was a rare case. If you ever go to a Crohns and Colitis UK local meeting you will meet so many different people all with differing symptoms. It can be so reassuring to know that it’s not all bad. Some people have not had a bad time in years. Plus we live in an ever learning society with new medicines and treatments appearing all the time. It is a scary disease as each person has their own take on it. It affects us all differently, physically and mentally.
we have to keep laughing at it and not let it ruin our lives (I know this is difficult at times)
Ben x
March 24th, 2011 13:12
Hello Vicky
You shouldnt look at the comic Relief lady as your own future. She was a very rare case. I know alot of Crohnies, and yes we have bad days/weeks, but most of us get a balance between normal life and dealing with the Crohn’s.
At 18, the Docs will try everything to make sure you get the Crohns under control without surgery and on the mildest of drugs. Unfortunatley the steroids will be around for a while as they are really good at controlling the symptoms. Noone likes them as their side effects can be a bit rubbish (I think Ive written a few posts about them).
Dont see Crohn’s as a life sentence. It can be very rough and you may see quite a few Doctors waiting rooms but you will meet many great people and become a stronger person.
If you need any info relating to the Disease then contact Crohns and Colitis UK – They are a great charity and have hundreds of free leaflets with useful info: http://www.nacc.org.uk/content/home.asp
Keep in touch and let us know how you get on. Im always an email away if you need a chat
Ben x
March 24th, 2011 21:08
Ben
Quick read books are books which the TUC publish to help get adults back into reading. They’re usually for sale around world book day time and only £1/2 each. I think even books of short stories would be great. I’ll have to try Boggle too! I have quite a few books downloaded on my iPhone too. And I’ve been known to read my uni coursebook on my iPhone. Its so nice to know I’m not quite so odd!
Hope everyones keeping well
Karen x
March 29th, 2011 22:26
Hi Ben,
Fellow blogger and Crohnie here.
Enjoyed discovering your blog – I’d love an iphone but don’t have one – what a great use for it!
Only discovered in the last few years (and have had CD lot longer!)that reading whilst on the loo is such a great help. Distraction, lessens pain, makes me feel like I’m not ‘wasting’ my time. I grab a magazine or my latest book. If I’m out and about I use my rather rubbish phone and catch up with msgs and texts – little do people realise……!
Will follow your blog. Ironically I write a blog about food…..yep, luckily able to enjoy majority of foods…well with certain exclusions, but I’m always hungry even when pretty poorly.
Best wishes
Kate
March 30th, 2011 19:57
Hello Kate
I never really thought about the pain distraction that reading could do. I guess it is a great way to take your mind away from whats happening.
I often think about what people may think if they knew I was respondng to their messages whilst sitting on the loo, but I spend so much time in there – it just makes sense! (Im not on the loo at the minute, so hopefully you’re not grossed out!)
Writing about food and being a Crohnie – not normally something that goes hand in hand. he he. Send me a link and will take a look at your site, I dont mind putting a link on here either.
Take care
Ben x
April 3rd, 2011 19:28
Thanks, Ben – you might have already found my blog as I noticed you’ve started following me on twitter today. My blog’s http://grazingkate.blogspot.com/ and my twitname is @grazingkate
Would love to hear from other Chronie’s. I shall link to your blog from mine.
Have had an awful weekend of it – supposed to be a special day today when I could do whatever I wanted (aka Mothers’ Day) and really wanted to go for a long walk in the countryside, but just had to do something far more sedate and basically go from toilet to toilet. Ho hum. I seem to be in one of those Imodium loops – can’t get back to ‘normal’, (well – relative normality!)
August 8th, 2011 14:46
So funny Ben. I do “Crazy Walks” in the morning. I create a sense of urgency; shoes on, rush down the stairs, walk half way around the block, then sprint in those long soft strides back.
August 9th, 2011 17:49
Its good to hear that we all do this. Im not so crazy after all!
Ben