Do you ever forget where the “Too much information” line is? I spend so much time around other Crohnies, close friends and family that I forget what is acceptable in everyday conversation. The regular guy in the street doesn’t really want to know about my bowel movements.
When someone asks me a question with regards to Crohn’s, I plough straight in. Quite often describing many of the symptoms, side effects and affected areas of my body. I don’t seem to blush with embarrassment anymore. Does this mean I’m comfortable talking about bums? When I meet new people I seem to find myself talking about my ailments, whether they want to hear them or not. I was once a shy and restrained boy and now I am upfront and open.
My wife gets fed up with how much I talk to strangers but I don’t seem to be able to stop myself. Up until being diagnosed, I had never heard of the condition, so now I find myself wanting to make everyone aware.
I obviously keep some of the “juicy” details to myself as they are not for the faint hearted. I hide these details from most people as I do like to keep certain things private. However, as soon as I am within a certain proximity of IBD sufferers, I act like a drunken fool. I spill all the gossip.
I didn’t realise how much us Crohnies discussed our war wounds until I was stood in a car park recently at a Crohn’s and Colitis UK Charity walk in Rutland. Someone I had never met before told me his entire life story. I knew how the symptoms started, how they were misdiagnosed, some terrible operations etc. As a fellow Crohnie I find it difficult to just listen. I stick my nose and tell them my story. Within 15 minutes we’re both up to scratch on each other. All that’s left is to show each other our scars. This is when a friend joins the conversation. She describes her journey through the Crohn’s world. Then we all lifted our t-shirts up and looked at each other’s scars. It was a timeline of procedures. The guy had had his op quite some time ago as well as some corrective surgery afterwards; so he had many large scars. I have 3 tiny incisions from the keyhole surgery. There is such a difference. In a perverse way I would like larger scars, so that the true intensity of my operation can be seen by onlookers. My tiny scars could be misinterpreted for something less serious. Don’t get me wrong, I’m glad a keyhole procedure was used as I was out of hospital quicker and had a much shorter recovery time. People appreciate what they can see much more than those things that are hidden.
Whilst out for a few drinks with 2 lovely friends the other night, I told them about this blog theme; talking too much about Crohn’s Disease. They said they find it interesting and like the fact I talk openly about it. Until meeting people like us, they’ll never about Crohn’s disease and the way it affects our everyday life.
We all had a different story. That’s the thing with Crohn’s; not 1 person suffers in the same way. We share certain experiences but we are still individuals. Crohn’s Disease has shaped my life for the better, it’s just a shame it’ll always be with me.
My Crohn’s Update
This week has been awful. I started the week with a cold which is always worsened by the medication I’m on. A lowered immune system means these things hit hard. Then my Crohn’s flared, leaving me drained of all my energy and most of my sanity. Then work erupted into a nightmare. Everything went wrong from start to finish, causing stress levels I really could do without.
As I write this the Crohn’s symptoms have died down but the cold is still leaving me even more lethargic than usual. I could sleep for days on end, if I was allowed.
I’m still smiling though. I had a brilliant Radio show this week on Hospital Radio Fox in the Leicester Royal Infirmary. I urge you to check it out if you ever have a weekend stay there (I hope you are never a listener!)
Much Love
Ben x
May 18th, 2011 17:53
Hi Ben,
I know exactly how you feel. I’ve noticed that if I’m asked “How’s your stomach?” My stock response is to give a detailed report on if I’m bleeding or how my abscesses are behaving! When did this happen to me?!!
I also, was a very shy but now when I go into hospitals or see any kind of doctor, before they’ve even greeted me my trousers are round my ankles and I’m asking if my knees need to come up higher!!
Sorry to hear that you’re flaring at the moment, that’s rubbish. Keep smiling and I look forward to reading your next blog
Kind regards,
Lucie
May 19th, 2011 20:10
Lovely to hear from you Lucie
Im glad Im not the only one. I just want people to know about it. Its funny, too, when in hospital and junior doctors come to see you. They are very shy about what they need to do and are shy about what they need to talk about. Its normally me trying to relax them! he he
Keep well
Ben x
May 23rd, 2011 15:33
Hi there,
First of all congratulations on the blog – a great platform for people with IBD. Apologies for contacting you via the comments form, couldn’t find an alternative method.
I’m contacting you from the Crohn’s and Colitis UK Press Office and wanted to suggest a great little link that you might want to share online.
http://www.gooddeskbaddesk.com
This microsite was launched at the Crohn’s & Colitis UK campaign launch at the House of Commons last week by the charity and Lord Prescott (whose daughter-in-law has Ulcerative Colitis).
We are hoping that employers will become more aware of the needs of employees with IBD and in turn that this will help all those with IBD in work, looking for work and abotu to embark on their career.
Please do let me know if you would like the press release that accompanies the campaign or a copy of the research report from Crohn’s and Colitis UK on IBD and Employment.
Kind regards and keep up the good work,
Emily
Crohns and Colitis UK Press Office
May 25th, 2011 13:24
Hi Ben,
Never fear – I too regail people with every last bowel movement and almost hourly updates on my wind, blockages and all the other delightful accompaniments that come with being as Crohnie. I do sometimes wonder if I sound like a broken record but if someone asks, I can’t help but give a genuine response. I think it must stem from doctors asking you to describe everything in minute detail – we’re just programmed to give the full low down!
I mentioned to you before that I was going to be involved in a clinical trial for lacquinimod – unfortunately for them (but also fortunately for me) i was too well to be included in the end. Annoying as I was looking forward to being a part of the research but good that my health seems to have picked up. I am continuing on the Methotrexate and have just had my dosage decreased as i was on the top whack – fingers crossed I remain stable!
I hope you’re recovering from your cold now and feeling better than you were.
Keep me posted – as always, I love reading your blog.
Tara
May 27th, 2011 21:54
Hello Emily
You can directly email me through the Email address that Crohns & Colitis UK has for me. Im on the Leicestershire & Rutland Organising team.
Sorry for the delayed reply, Ive been out of the country so not had access to my blog.
I have no problem with putting any press on my website. Please mail me the press release and will put an article on here and make sure it gets passed around.
Kind Regards
Ben x
May 27th, 2011 21:57
Hello Tara
Its always nice to hear that you’re doing too well for certain treatments. Would be interesting to take part in research though. You could be part of the cure! he he.
I think the openess must come, in some part, from talking to doctors and nurses. This is especially true when you are an in patient. So many people ask you the same, in depth questions over and over and over and over and ……………………………….
I seem to have recovered from the cold but now Im dealing with getting back from Germany. Different foods and waters have made me a little unstable, but nothing too heavy.
look after yourself and take care
Ben x
May 27th, 2011 22:03
Oh dear and oh so true. People ask me too ‘how are you, how’s that Crohns thing going?’And I end up saying 10 poos down 10 to go and feel like I’m being turned inside out! (to the look of horror)I now nod and smile and stay dosed on codeine,my pal for life. The only person I’m honest with is my nan who has colitis. We share many bum stories ha ha! Great blog Ben, looking forward to the next read
July 11th, 2011 15:20
Hi Ben!
Thank you thank you thank you! FINALLY I’ve found someone who positively lives with Crohn’s hooray!
I, too, suffer from MAJOR over-share and sometimes I hear what I am saying and wish I could stop!
Been diagnosed for over 6 years, all gone to hell in a hand-basket recently so on a the FORTISIP (which is very hard to be grown up about!) for 4 wks and counting so been keeping a blog and trying to find a positive message out there. Glad to have found yours!
Also getting married in 5 weeks so great to ready your story.
Will keep an eye on here for sure. Any advice welcome. Hope you feel better now!
Star x
July 12th, 2011 19:45
Hello Star
I tried to reply yesterday, but ended up destroying my blog site. At the moment it is limping along. I just wish I knew what I was doing with all the technical stuff.
I try and stay positive. Sometimes it is flipping difficult. This disease is pants, literally, but it has made me a much better human being.
Good luck with the wedding. Hopefully you’ll be off the fortisips by then. You need to be able to enjoy your wedding breakfast, not sipping a dodgy tasting milkshake!
My wedding day went well, except for losing my voice. I dosed up on imodium and had back ups of painkillers. Just enjoy the day and the happiness may help keep the bowel of doom at bay.
Keep in touch – Im just gonna pop off and look at your blog
Ben x
September 16th, 2011 02:36
Hey Ben,
I’m new to your blog, but I can say reading it has already helped to feel more supported. It’s a terrible thing that so many people suffer from Crohn’s, but I can say it feels good to know I’m not alone. When I first saw the title of this post “Too Much Information” I immediately thought of something else, too: how information overload can happen for Crohn’s sufferers researching possible solutions to their flares, or possible (very scary) side effects to new medications, etc. etc. Sometimes I feel like I’m losing my sanity, and I can’t help myself trying to take in more and more information, to feel like I have more control. It is always good to stay informed, but sometimes too much research information intake can be toxic for the Crohn’s sufferer as well. Just another side of the phrase sparked by your blog topic title I thought I’d share.
I look forward to more posts. And as I say to other Crohnies, hang in there.
Jim
September 18th, 2011 19:19
Hello Jim
There is alot of info out there that a simple “Google” search can scare you with. When diagnosed, we should be given special specticles that filter out all the “guff”.
When I was put on Infliximab, I found so much stuff on the net that I was terrified.
I find talking to people the best method of getting useful information. Twitter, Blogs, Facebook and Crohns and Colitis UK groups.
Hope you are keeping well
Ben x
January 24th, 2012 10:19
Hi Ben,
I just stumbled upon your blog last night and so want to thank you. My 10yr old son is a newly diagnosed “crohnie” and the impact it has had on our whole family is unbelievable. It’s heartbreaking seeing his suffering and trying to stay positive for him takes so much effort. We feel so isolated sometimes, but your blog has brought some lightness into the whole thing. The worst is the netsurfing which is just full of doom and gloom and all the contradictory stuff out there……I just end up more confused, but it must be done! And I cannot get over how many hours of the day are dedicated to toilet talk……..therapeutic though it is!!!
Going to carry on following your journey and wish you lots more happy times, as for us all.
Take care,
Seema
January 24th, 2012 12:26
Hello Seema
Thank you for your lovely comments. It is such a shame your son has been diagnosed so young; but on the other hand, at least he is in the stage of his life where he can learn about the disease. He will live with it and learn to control it.
The Internet is full of “advice” and “true” stories. They have to be taken with a pinch of salt. If you can get along to a Crohns & Colitis UK meeting you will get to meet others in a similar situation. They have a parent to parent helpline too. It’s a great way of getting quality information, help and advice from others walking in similar shoes.
Crohns is not all bad. It can be a good excuse for getting out of things you don’t want to do! It has made me a much stronger person. I’d love to be cured but I would never wish my diagnosis away. I feel I’m a better person for it.
My wife finds it difficult to watch me suffer, so I can imagine how tough it must be for a parent. There is support out there, so make sure you take advantage of it. twitter is also a good place to find other crohnies.
I hope it all goes well for him. Be open and honest with him. Make sure you are each others rock
Keep in touch
Ben x