Happy New Year Crohnies. I hope you had a pain free Christmas and New Year.
I have taken a small break from the blog, partly because my Crohn’s has been under control and also because it hasn’t. That probably doesn’t make a great deal of sense, but please bear with me.
As Christmas approached I was feeling pretty good. My symptoms had died down and I was generally feeling alright. My new job was taking a lot of energy and maybe raised my stress levels. I knew this wasn’t good for my health but any change in job is going to be stressful.
When my symptoms are under control, I find it hard to locate my writing muse. I’m not sure what to write about. I kind of forget about Crohn’s disease. Forgetting about the disease is blissful and very difficult to achieve for some of us. So you will forgive me for taking some “me” time. The calm doesn’t always last a long time though.
New job stresses caught me out. The Crohn’s Disease spiralled out of control and the onset of symptoms began appearing. The latest flare up was a slow and long burn, taking several weeks to hit its peak. Painful cramps and stabbings came back and my need for the loo returned to annoying levels. I think another problem I have, is admitting something is wrong. I try and get through life as if nothing is wrong. Ignorance can be bliss sometimes!
I saw in the New Year with little problem (except for the usual Alcohol related problems, but these are to be expected and are self inflicted). As January came to end my symptoms were getting out of hand. I was losing control. The pain killers I was using got stronger and I was using an increasing amount of Imodium. This isn’t a nice way to live.
In a way, I was lucky this time. The main flare up happened at a weekend which meant it didn’t affect my work directly. However, the week after a flare can be just as bad as the flare itself. My body is drained of energy, leaving nothing in reserve. I get tired and weak. My concentration flutters away. I find the recovery weeks harder than the painful weeks. Pain can be dealt with; it’s difficult, but it is just electric signals from the bowel to the brain and with some pain killers and hot water bottles you can numb the feelings. Hazy heads are much more difficult to deal with.
The hazy head seems to be a more frequent symptom. I don’t know if this is due to medication or maybe the disease itself. Quite often people will talk to me and I just don’t pay attention. This isn’t me not being interested; it is a struggle to remain concentrated on anything. The same goes for when I’m reading or watching TV. I try my best to concentrate, but after 10 minutes I drift off to somewhere else. My attention span has been ruined. I hope it’s not a permanent state of mind. I enjoy learning but struggle to keep any of the data stored.
I do my best to remain focussed at work, but as you’re probably aware, that is no easy feat. Coffee is a no, fizzy drinks like cola are a no; so it is difficult to get an artificial “pick me up”. You just get used to grinning and bearing it. To be honest I’m getting pretty good at this, right up until the point you are asked to do something that requires mental thought. At this point, I look blankly at a piece of paper for 5 minutes thinking “Oh crap, how do I hide my uselessness?” Then it strikes: Google! Google is always the answer. I’m an engineer and I scour Google most days for the answers to some difficult calculations.
Even though my mind is going blank, I can type, hold a pencil and vaguely remember some stuff from university, so I Crohn’s Disease shouldn’t hold any of us back. The pains slow us down, the fatigue is tough but we must always remember “It could be worse”. This is a difficult phrase to accept. It is thrown at me a lot and at times I struggle to believe it. But trust me it could be worse.
Before I leave you I would like to thank my wife. For Christmas she got me an Ice Cream maker and recipe book. This is an amazing gift for a Crohnie. Not only do I love sweet and sugary things, it is a great way to keep weight piling on. Our weight yoyos up and down and quite often stays low. We are advised by doctors and dieticians to eat certain foods to “fatten” us up. I strongly recommend Ice Cream makers for this. You can control all the ingredients, even making Dairy Free ice cream. So it is ideal plus it is great fun and easy.
Stay well and I’ll do my best to post a bit more often!
Ben x
March 12th, 2011 09:40
Hi Ben, I stumbled across your diary yesterday and it was so nice to read about your experiences. What you have been through sounds almost exactly like my experience of crohns disease. I have tried azathioprine, steroids, infliximab and adalimumab; all of which stopped working. I then had an ileoceacal resection on June 7th 2010 and your diary reads just as I would have written it. Unfortunately my crohns came back within 2 months of having the surgery-had another brief spell on steroids and am now getting involved in a clinical trial for a new drug lacquinimod at Bristol Royal Infirmary. Theres a chance I will get the placebo drug but I felt it was worth a shot as I’m only 23 and want to explore all avenues before going down the surgery route again. I’ll let you know how I get one and will certainly keep my eye on your blog. Really hope you stay well-you seem to remain pretty positive which is great. Also think I might take your advice and purchase an ice cream maker ( for medical reasons obviously!). All the best, Tara
March 13th, 2011 00:43
Hello Tara
I love hearing from people who read my blog, although it is a shame that we all suffer from the same problems.
I hope the clinical trial goes well. Im am very interested to hear how it goes (even if you get the placebo)
Its always best to remain positive. We could so easily let it rule our life and bring us down. Times can be pretty rough, but a smile and a bit of positive thinking (even in our darkest of hours) will help our recovery.
I really hope you see some improvement soon
Ben x
March 16th, 2011 21:53
hi Ben, ive just had a read of your peice in the nacc newsletter,which led me2your blogg. im 32 n have the joy of havin crohn,s for 14years,the past3been my worst.ive been with my hubby 10years,n unbeliveably 5years ago he2 got dignosed with it.luckly he,s back fighting fit n has it well under control. im due back in hos on the 4th april for a hernia repair,ive had a resection 3times now{none with keyhole}hence the hernia..anyway im witterin on now n all i really wanted2say was ive really enjoyed reading your blogg,ur positive atitude was just what i needed,im even going to ring the”groups n volunteering”2offer2help in hull,thanks again,,enjoy ur ice cream sam.E. x
March 18th, 2011 23:55
Hi Sam
Very unlucky that your husband was diagnosed as well! What are the odds?
3 operations, hernias etc is pretty rough. Really feel for you. I was very lucky to have keyhole – so fewer risks and side effects.
Im glad you enjoyed my blog. I really wanted to make a website where people could see that they were not alone. We can all suffer together. Share experiences.
Not all the times are bad – hopefully Im getting this across to those who have recently been diagnosed. There is light at the end of the tunnel (Even if the tunnel is very long)
Good luck wih the offer of volunteering. You’ll find it very rewarding
Take care
Ben x
November 28th, 2011 11:00
Hi Ben,
I too stumbled across your website. I really did enjoy reading your blogs and
comments from other crohns sufferers. I am 30 and i have crohns. 2011
has been a nightmare year (you all know what its like) At the moment im taking
mercaptopurine in the hope it will give me a bit of remission. Only been
taking it three weeks so i guess its early days so far. Do you know if there are
any support groups in the south derbyshire area at all??
Hope you stay well and hope you keep continuing with the blogs
All the best
Jody
November 29th, 2011 22:23
Hello Jody
I hope Mercaptopurine helps. It really seems to have done the trick for me (fingers crossed). It’s taken quite a while though. Not sure how true this is, but I was once told it can take 1-2 years for Azathiaprine or Mercaptopurine to really kick in. Might be rubbish – but I guess the message is correct. Give it time and dont expect too much too soon.
Im not so sure about support groups in Derby. If you dont mind a drive to Leicester, we have a brilliant support group. We hold regular meetings and send out 2-3 newsletters a year. In fact we are holding a 20th anniversary meeting this weekend at the Glenfield Hospital in Leicester. We have a few industry experts, including IBD nurses and consultants coming to chat to us. Its all very personal and you get a chance to bombard them with questions without any pressures.
If you take a look here: http://www.crohnsandcolitis.org.uk/content/groups/locate.asp
you may find a group closer. It also has the links to all our group websites and old newsletters.
My next blog will be about a recent colonoscopy and will hopefully be up and ready to read soon
Hope the drugs work and you get all the support you need. Come back here any time or follow me on twitter. I try and respond quickly (Twitter name @mrawesomeben)
Take care
Ben x
November 29th, 2011 22:25
Hello Jody
I hope Mercaptopurine helps. It really seems to have done the trick for me (fingers crossed). It’s taken quite a while though. Not sure how true this is, but I was once told it can take 1-2 years for Azathiaprine or Mercaptopurine to really kick in. Might be rubbish – but I guess the message is correct. Give it time and dont expect too much too soon.
Im not so sure about support groups in Derby. If you dont mind a drive to Leicester, we have a brilliant support group. We hold regular meetings and send out 2-3 newsletters a year. In fact we are holding a 20th anniversary meeting this weekend at the Glenfield Hospital in Leicester. We have a few industry experts, including IBD nurses and consultants coming to chat to us. Its all very personal and you get a chance to bombard them with questions without any pressures.
If you take a look here: http://www.crohnsandcolitis.org.uk/content/groups/locate.asp
you may find a group closer. It also has the links to all our group websites and old newsletters.
My next blog will be about a recent colonoscopy and will hopefully be up and ready to read soon
Hope the drugs work and you get all the support you need. Come back here any time or follow me on twitter. I try and respond quickly (Twitter name @mrawesomeben)
Take care
Ben x