As a Chronic illness sufferer I often think my luck is way down. I often feel as though I must have done something really bad throughout
my short life to get this kind of Karma. Do I deserve this? I personally don’t think I do. I don’t think anyone deserves this. We have to live our entire life battling our body and our mind.
As I have said in many posts before, I believe Crohn’s has changed my life for the better in so many ways. It inspired me to volunteer
with a couple of charities, I know not to take life for granted and I appreciate what I have in my life much more than I did before.
I think the appreciation of life and what we have around us is often lacked by many people. They go through life and seem to have
everything. They can appear to have lady luck sitting in their lap. They get the good promotions, the fast car, the holidays etc. They have a stable job that they are content with, they don’t have any real health concerns and they don’t have to plan every journey to make sure they know where the nearest toilets are! They seem to take everything for granted. Obviously they must have their own problems it’s just difficult to see them from the outside. Especially when you have suitcases full of problems!
This past week I have been feeling really depressed. The disease has made me strive to enjoy life but it is so difficult when everything you do is a struggle. Crohn’s disease can impact our working life in many ways. I’m lucky to have an understanding boss, but it doesn’t help me feeling that I am doing something I don’t love. On the other hand I know people who are so badly affected by the disease, that they have had to be signed off work indefinitely. This means they are struggling to pay bills with little or no support.
I would love to give it all up and explore what life has to offer. Unfortunately I don’t think my bank manager would be happy with me doing that.
We all know how Crohn’s Disease can affect us physically but do we really understand what it does to our mind? Nobody ever told me about the mental struggle that comes with a chronic illness. It’s not just you as the sufferer either; anybody close to you will be affected. I try my best not to let it get the better of me but every few months I dedicate a whole week to me; I can feel sorry for myself and reflect on my achievements (Or lack of). This then gets all the bad feelings out and I can plough on enjoying what I have and give up reflecting about what I don’t have. There are people out there with less.
My week of depression is over; I am now full of the joys of life. So it is back to the happy Ben, the one who finds the world a beautiful place.
Even by writing this blog, I feel I have exhausted some negativity from my soul. I hope you can see my message hidden in here somewhere,
but if not, here it is spelt out:
It’s not the end of the world; it’s just another bump in the road of life
Ben x
p.s Crohn’s Update
Been good for a few weeks, then it has crept back in. Ive had cramps for about a week. Hopefully it’ll settle back down. Mercaptopurine seems to be controlling the Crohn’s on the whole. Paracetamol and tramadol have been by my side although I been trying not to rely on painkillers so much recently. It cant be good for your body to pump it full of these toxins (Just a shame these toxins make alot of the badness go away)
August 2nd, 2011 09:45
Hi Ben,
I hope you’re OK – I think it’s a good idea to devote a bit of time to brooding / unhappiness and have a good old mope and then pull your socks up, get back to the positivity again – I do a similar thing. I also keep a diary – I keep a section for the CD – a pain score and tally of visits to toilet. Someone suggested it to me and it’s been invaluable. Sometimes three days of symptoms (on top of the 20 plus years of previous symptoms in the past)can feel overwhelming, but if I look back at my diary and can analyse it and think, well actually, I was fine for 4 days last week and 5 days the previous week, so it’s not all bad. It helps get it into perspective and also REALLY useful for when it really is a flare-up and you need to go to the docs pronto and you have the hard evidence to back it up that yes it doesn’t just feel different, it really is different.
I was interested to read that you take Tramadol. I’ve only ever been given Paracetamol and Voltarol for pain (Diclofenac)
Hope you keep your spirits up and keep going with the great blog.
August 2nd, 2011 19:49
Hello
Ive tried alot of different pain killers but nothing is particulalry suitable for IBD. They all annoy your bowel. I find Tramadol doesnt cause too many bad side effects (For me and on short term use). It generally just makes my head go all gooey and takes me to a nicer place for a couple of hours.
I used to have a Bowel Diary. I tracked every movement, food input, physical feelings and emotional feelings. I did it for 12 months and it came in useful. Ive not required hospital treatment for over a year now, so I pretend I dont need to monitor myself so closely (Head in denile, making myself believe I’ll never need a return visit to the hospital)
My spirits are high, although I did have a week off work last week and the return to work this week really hurts. I would love a good 40 years off work!! he he
Keep well
Ben
August 6th, 2011 09:39
Ben – you are truly awesome, inspiring to read how you get on with things AND give something back to others. I get annoyed with those selfish people who have a cosy life and give nothing back to others
Hold your head high, Ben
I’m sure was excellent this morning – 2 minutes of silence not a problem is it? too much noise in the world sometimes
Ian
August 7th, 2011 20:35
Thank you Ian
Life can be tricky but I dont see the point in hating it. Its precious and rare. We are lucky to be here.
I love doing the work with the charities. Making a difference to people’s lives, no matter how small, is a great gift
Injecting a bit of humour into my blog really helps show people that we can laugh about this pants disease
Ben
August 12th, 2011 00:56
hi ben i have been suffering a relapse it started before christmas ,i have really tried to stay positive even with the surgens threats of removing my large bowel,i also have a diseased small bowel,it ment i had a lot of time off work but in the end i couldnt afford to be off anymore,so i have returned to worked i can only describe it as torture,its hard to stay positive when you cant afford to be ill my wife has ms and we have a 9 month old daugter and all i want is to be a good dad,but the negative mental aspect of cd if im honest is destroying me,my dr is putting me on biological treatment tnf blocker as the the immuno drugs they gave serious side effects,my family dont talk to me,and my friends have stopped calling ive gone from being strong and fit to a shrink wrapped skeleton when i go out people look at me like im a drug addict cause of how i look ,so when you talk about luck im shit out of it
i must admitt that it all melts when my daughter smiles
kind regards
lenni
August 14th, 2011 01:10
hi ben had crohns forever feeling really low today just like to talk to someone but i expect you are asleep sorry.
August 14th, 2011 19:52
It can be an awful disease. But the fact that you have a loving wife and beautiful daughter must make you a fighter.
I have days where I think giving up would be easier. The world is such a lovely place once you get over this and I know it is worth fighting for. Life is rare and very precious.
Have you tried sitting your friends and family down to openly discuss what is going on? It would really help you to have support from these people.
Work would be so much better if we didnt have to go. I feel so guilty about having sick days, so much so that I even go in when I really shouldnt.
I hope you keep strong and find some remission soon
Please keep in touch, either on here or twitter @mraswesomeben
Take care
Ben x
August 14th, 2011 19:55
Hello
I imagine this is a little late. I probably would have been in bed, but my notifications only get sent to me once a day too.
If you ever want a chat or something, find me on Twitter. I try and go on there daily and messages come through straight away: @mrawesomeben
I think we all know what it’s like to feel low. This disease affects our minds more than anyone can ever know. The thing is to try and remember, no matter how bad things get, life is a lovely thing. We have to deal with the hand we have been dealt and try and ebjoy the fruits that are on offer
I hope you are feeling a bit more chipper today
Take care
Ben x
August 17th, 2011 23:21
hi ben
well ive had my first infusion of infliximab well i had it monday and i feel so much better the only way i can describe it is someones turned the lights on,better formed stales no blood cramps have calmed down,im a bit confused as it shouldnt work this quick but hey im not moaning im in a lot better place mentally as well i just wanted to thank you for your kind words your completely right lifes for living
kind regards
lenni
August 19th, 2011 16:20
Im glad the Infliximab is working for you. It seems very hit and miss. Some people take to it, others dont get any benefit. The joys of Crohn’s Disease!
Glad youve got mind sorted too. The mental affects of what we go through can be pretty tough to deal with
Keep well
Ben
September 12th, 2011 09:29
Hello Ben, I just visited your website and wanted to say hello and congratulations for putting together an interesting site with a humerous style. IBD doesnt give us much to smile about sometimes. I’ve had Colitis for 10 years and as you can see from my website I’m in the design business also and travelling around the country has had its challenges sometimes when I have a flare up on the go. But i have found everyone around me to be great at understanding that situation. It’s a great encouragement to see others like you dealing with IBD and keeping a positive angle on things. Sometimes it just isnt easy. Keep it up – and good luck with your ongoing treatment!
September 12th, 2011 20:17
Hello
We used to use Root Solutions at my old company. Really miss PTC – I dont find SWorks as good (In my opinion)
IBD causes so many problems in our lives that we cant focus on the negatives else we wouldnt go anywhere or do anything. I think making light of our illnesses helps us cope and get through some of the tougher days.
Being on the go; driving around the country must be extremely difficult when you’re flaring up. You say everyone is very understanding; this is usually the case. I try and encourage anyone who is worried about employers and other staff, to talk to them. Sometimes they are rubbish, but most of the time they can really help and give you the extra help you may need (Not that we show that we are struggling. We put the brave face on and pretend all is well)
Im being extremely rubbish at blogging lately. I hope its a sign that things are improving, but I think it’s more that I procrastinate far too much!
Take care and please do keep in touch (I may need you for PTC work!)
Ben x
September 18th, 2011 00:18
Hey Ben! Thought I would drop you a note since I haven’t seen you on my blog lately (everydayhealth. I think you have a wonderful point of view and it happens to match up to my outlook. I also didn’t expect the mental struggles that I face and sometime wonder if I am on the verge of going crazy. I think getting it out by devoting one week to allowing yourself to feel all the feelings that we are always trying to smother is a good idea and maybe I will try it and see.
I may be a participant in a stem cell clinical trial (should find out next week if I qualify) so be sure to check out my blog to see how it goes.
Hope that you are feeling better!
Take care
Kelly R
September 18th, 2011 19:22
Hello Kelly
Im ok – I destroyed my old PC and lost everything off it. This included all my favorites. So I am slowly trying to rebuild all the blogs I used to read regularly.
Are you looking forward to the Stem Cell (If you get on the trial?)
Will definitely be keeping up with your goings on.
Speak soon – Keep well
Ben x
October 24th, 2011 20:40
Hey, I have just come across your blog via a tweet to Dynamo! As I write this I am lying in my hospital bed, where I have been for past 4 weeks with my monstrous crohns. I have the rarer gastro-duodenal crohns, which causes severe ulcers and subsequently severe anaemia. What has shocked me about your posts and other’s comments is the poor level of pain relief you appear to be offered. I too am a GI specialist nurse and never would diclofenac be prescribed for an ulcerative condition! I am prescribed paracetamol, dihydrocodeine and oramorph. Any time I’m admitted (such as now) I am prescribed IV morphine 5mg 2 hourly. I don’t take it 2 hourly, but it is prescribed that way to ensure I am never in pain. I must say too that this is the pain protocol here for all crohns, not specifically gastro duodenal. You must be in agony at times. I responded very well to mercaptopurine too, however, it was ultimately too toxic for me and caused a fierce pancreatitis. Am now 2 doses in on Infliximab. Also, does anyone on inflix have PICC lines or other long term access? I do, it has made life a lot easier. My access is terrible after the amount of IV’s and blood tests, and was being subjected to femoral stabs everytime I needed a blood test, and I required central lines (jugular and subclavian) every time I was admitted. Anyway, better go, nurses are coming with my IV’s. So nice to know others are going through the same and I’m not alone in the misery that is crohns. Laters!
October 24th, 2011 21:07
Hi Ben,
I have chrohns and now have become better using azothioprine. I also eat sweet poatoe mash and it seems to keep my tummy in check. Its such a novelty not to have a bad tummy for more than 3 days.
There is always hope and you are a great embassador for chrohns!!!!!
October 24th, 2011 22:30
Hi I have just read your blog, its likeing readingmy mind some of it, I have crohns, I cant work, as my immune system is now so low im ill most of the time and I get so tired, I do try to live life to the full but have to prepare for big events. Please eatch this film, on you tube Learning to Live with Crohns Disease, That was my story. I found your link on Twitter. Kind Regards Another Fighter x
October 25th, 2011 18:23
Ive never heard of gastro-duodenal Crohns. The way you describe it sounds pretty awful (more awful than bog standard dodgy bowelness that we suffer).
When Im in hospital, the pain relief is pretty good. I mostly struggle when at home. I tried dihydrocodeine but it blocked me up even more than I was.
The Mercaptopurine is seemingly working well for me now. Ive been pretty much symptom free for a while. I think IBS is my biggest problem now.
The idea behind this blog and my tweets is make sure other Crohnies know they are not alone (plus I try and make it light hearted so newbies arent scared off)
Hope you get yourself out of the hospital soon
Get well soon
Ben x
October 25th, 2011 18:27
Hello
I love sweet potato mash. Its 1 of my “safe” foods, he he. Its terrible that you cant work. I know a few people who suffer so badly that it affects their working life. I think Ive been pretty lucky and managed to be pretty stable with work, although some days Im so exhausted I barely do anything. Im getting quite good at covering my tracks, so it seems Ive been busy!!
Im about 2 months into being symptom free (probably why my blog posts have become rare). My Op last year and Mercaptopurine must be working. Hope I can make a year without symptoms. Never too sure what “normal” should feel like, but I reckon Im as close as I’ll ever be.
Keep well
Ben x
October 25th, 2011 18:31
Hello
1 of the aims of this website was to make the Crohn’s community realise they are not alone. We all experience the same kind of things. It still warms me now to know that I am not going through this alone. A quick read of a few blogs or Tweets and you can become relaxed.
I was wanting to watch your Vid but I cannot see a link?? Could you Tweet me or send me a link?
I think all us Crohnies try and live life to the max, regardless as to how we feel inside. We dont want to get held back because of our illness. Just remember to take care
Look forward to seeing your Vid
Ben x
October 25th, 2011 21:17
Hi Ben and all,
I have just tweeted you, then came on here to read more of your story and others too.
My mum had the symptoms and pains for years with the GP saying it was IBS, not believing she was in the pain she was in. Then the passing of blood finally made them take action & crohns was diagnosed.
Mum is currently on 8 Pentasa and 2 Azathioprine a day, any of you had experience of these? I know everyone is different, but she still doesnt seem to be moving forward on them, constantly being put back on steroids.
A recent liver scan has showed Gaul Stones too, which she is waiting for a appointment to have her Gaul Baldder removed – again, has this happened to any of you?
Mum went to her local NACC, just when she needed a boost as she was feeling very low about everything. Unfortunatly, there wasnt any suffers there, family members of suffers. I have passed this and forums onto her as I think support from people who know what it is like to live with Crohns is needed. The nurse and consultant are great, but ok they know medically but not what it is like to live day to day with it.
Im still learning and trying to understand things myself to help and support her, so any tips and help would be much appreciated.
Hope everyone is keeping well at the moment.
Thanks
Jane
October 26th, 2011 20:16
Hello Jane
When I was finally diagnosed (similar situation to your mum, IBS,IBS,IBS oh crap you need a blood transfusion – is pretty much how it went). This isn’t always the case; I think GP’s are becoming a little more educated in IBD and seem to be diagnosing it earlier in the sufferer’s disease.
I began with 8 Pentasa and 2 Aza. right back in the beginning. Unfortunately it didn’t really help me – or maybe I was too far gone. My bowel was badly scarred and no matter how much med I had, it would never reduce the symptoms (The scarring can sometimes be just as bad). Also, 2 Aza. made me feel extremely sick, quite often ending up with vomiting.
After my op to remove the scarring, the 6Mcap ~(a sister drug to Aza.)~ seemed to do the trick. I’m doing really well at the min.
Steroids are great at reducing the Crohn’s symptoms but do bring their own side effects. The depressive state they caused was tough, so make sure you are there to reassure her throughout the treatment. Crohn’s affects your mental health. The difficulties of living with a relatively unknown and often not talked about disease does play on your mind. The fact you are researching shows that you care. Just be her rock and make sure you listen to what she says.
Letting her know that she is not alone and that eventually things will improve will really help her. It is scary at first but after a little time, it just becomes the “norm”. The bad times can be bad but Crohn’s Disease has also made me who I am. I wouldn’t change the fact I have had it (I would love to be cured though). It has made me stronger; I appreciate life a lot more and I do much more to help others.
I have met some fantastic people. Some of my Crohn’s friends have controlled their symptoms with diet, others have had operations. We all differ and so does the disease.
It is not the end of the world. As my blog has shown over the past few years, it can be funny, it can be sad, it can be painful and it can be all OK.
The Gaul bladder thing has never happened. I’m sure it could be linked with Crohn’s (My GP likes to blame my Crohn’s for every little thing – even if I broke my leg I’m sure Crohn’s would be the cause!! he he)
It’s a shame your local NACC group doesn’t have any sufferer’s. Are there any other’s within easy access? Our group has a very high attendance of sufferer’s and family members. We get a good mix. All ages too – Children up to OAPs.
We do a local newsletter 2/3 times a year. Have a look through these and maybe print one out for your mum. It shows all the things we get up to as well as some member’s stories.
NACC also has some very useful telephone numbers for a variety of different callers. Make use of them.
My only advice is to be strong. Sometimes she will find it difficult to talk to you (I sometimes try not to discuss everything with my partner) but stick it out. She may get angry and frustrated, sometimes you have to be a punch bag – but I can guarantee that she will appreciate every moment you offer her
Any questions, Tweet, blog or email me. If I can offer any help I may be able to point you in a good direction
Thankyou for your message
Keep Well
Ben x
@mrawesomeben