Expert in crohn's. suffering since 1994

[spencer2012]

hi. my name is spencer and i have crohn's. I have suffered with crohns since 1994 when i was just 19. i was diagnosed in fact on new years eve after i fainted from pain and extreme vomitting. on further medical examination it was discovered my bowel had perferated and i had peritonitis. since then my life has been up and down like a roller coaster. ive every embarrassing and evasive test known to man, with bowel section removals and fistulas. ive even had the dreaded bag and the reversal. nowadays ive learned that i have this horrid disease for life so i no longer moan or bitch about it. instead of wasting time on these things i spend my time trying to beat it. learning new ways to avoid and outsnake it. the are many different things such as foods and activities that will effect every crohns sufferer in the same way but there are many more which will be far more predominent in each individual and will make each one of you out there feel slightly different. because each one of us is different. our disease effects us all in different ways but the one thing we share is the tremendous pain and anguish and frustration our illness can cause. our pain seems to be less known to others as over the years ive noticed crohns sufferers to be among the strongest of the sick. half the time youd never know one of us is in pain because we tend not to let on until we really cant take it anymore. is this because were embarrased? because we dont like to be a burden? or genuinely because we are strong? what i do know is that i have stopped being embarrased about the things that have happened to me due my illness and used them to become a stronger person, ive learned ingnorance derrives from lack of education. so ive educated myself and knowledge is the best weapon to win the fight.if i can help anyone with anything, then ive won another battle against crohns. please, ask away............

 

[Angrybird]

Hello Spencer and welcome to the forum, I am glad you have decided to join

I think when it comes to the pain we have to deal with it becomes easy to hide because we get used to living with it and this becomes the norm. Even when it comes to bm's I got so used to having runny or soft poops a few times a day that at the beginning of my pregnancy I thought I was constipated - turns out it is normal to have one solid bm a day! I was initially embarrassed but after a while I got used to be poked and prodded and am now able to laugh at myself about it, I have the thought process that it could always be worse. How are things now for you? Is the tum settled? Are you on any meds?

AB
xx

 

[spencer2012]

hi angrybird. im glad your like me, i too laugh about it now. it helps sometimes. my friends all understand and join in to an extent. I actually just came out of hospital 2 days ago as i have a stricture midway that inflames every now and then so i get my hydraquarterzone steroids I.V to help. eventually itll have to be removed i guess but they say they dont want to until they have to. other than that im ok thanks. i gave up smoking and excessive drinking and eat well and get exercise so other than the stricture all the symptoms i used to suffer have all but dissappered. i take 175mg aziathioprine daily. i also take one ferrous fumerate daily which helps my BM's and energy levels. what about you? are you controlling it well? x

 

[Angrybird]

Very well at the moment thank you, I think the little piglet is helping with this. Why do the docs feel you can wait to have the stricture removed?

 

[afidz]

Spencer, I love your attitude on having Crohn's and so happy that you want to share your knowlege and experience. You really do have to be your best advocate and learn as much as you can. You have to trust yourself and know your body. CONGRATS on quitting smoking, I am about a month in, not really struggling anymore for the most part. I look forward to reading your posts, welcome to the forum!

 

[spencer2012]

angrybird i think what theyre saying is they can control it with hydroquarterzone for now so why undertake surgery when its not absolutely essential at this time. i only have so much stomach right? and afidz, thanks for your vote of confidence. ive found that knowledge is power. over the years the amount of people ive encountered that repeatedly suffer from the same episodes purely because they keep repeating the same mistakes in lifestyle and diet. sure drugs will work but theres no better meds than positive mental and physical attitude and the know how to arm your body with the natural defences. it annoys me when people cant take the time to know their body. i know this will not cure them but it will sure as hell help. i find being completely open helps too. as far as im concerened ive done nothing wrong, i didnt ask to have crohns therefore ive nothing to be embarrassed about. im glad you read my post, its nice to know there are like minded people too that i can talk to. hows your illness treating you? when you say a month in do you mean your crohns or quitting smoking? hope alls good, thanks for the post and dont be stranger!!

 

[spencer2012]

sorry just realised you meant smoking, good luck with that

 

[afidz]

I was diagnosed in 2007 and went in remission in 2009, I an not medicated right now but I should be able to start the meds again by the summer.

 

[Angrybird]

angrybird i think what theyre saying is they can control it with hydroquarterzone for now so why undertake surgery when its not absolutely essential at this time. i only have so much stomach right?

Fair enough, as long as they are keeping an eye on things properly for you.