My Story 22,crohns,uk.

[christye]

Hello everyone

I have been suffering from symptoms of crohns disease since the age of 17,at first it started with a little bit of blood when i went to the toilet and escalated into crippling abdominal cramps,urgency to use the toilet (not always making it) vomiting, fever, constantly tired... sleeping 12 plus hours most nights and still needing more sleep... These symptoms i have had on and off for for six years. I never really told/confined in anyone about what was going on as i almost felt embarrassed..maybe i was allergic to something,or maybe something similar happened to everyone else but it wasn't talked about and i just needed to pull my self together and get on with it.

I got thrown out of university because of poor attendance due to being constantly Ill.

In Late October of last year I was in the middle of my worst flare up yet at 5'8 i usually weigh between 10,10 & a half stone, during this flare up i lost two stone and was visiting the toilet to bleed around 40-50 times a day possibly more. I was vomiting after every meal,sweating and crying with cramps and couldn't really see how i was going to get better.

Both reluctant and afraid I went to my Doctor who examined me,told me i had piles and gave me suppositories to insert. For some reason i wasnt quite convinced with his diagnosis,at the time i had self diagnosed myself with ulcerate colitis,he told me i deffinatley didnt have crohns or colitis and it was just 'a little pile'.


A few days after mys symptoms if anything were worsening,My mum took me to the hospital where i told them what had been occuring,i was put on a drip straight away and was hospitalized for 11 days. During this time i got diagnosed with a severe case of crohns disease. I was informed if he had left it much longer my bowel would have ruptured,leaked into my body and i would have died. At the low point in hospital the pain was unbearable,i was on tramadol,buscopram,morphine through a drip, syrup morphine and diasapram ,which just about took the edge of the pain,or atleast made me out of it enough not to care. At first i wasnt responding to the steroids i had been put on..and it appeared at that time the only root to go down would be to have some of my bowel removed,i had a visit from a girl who had recently had the operation which scared me to death,that very same night the steroids starting to calm down some of the inflammation and my future looked alot more positive.. i was then put on infliximab and in about a week all my symptoms had completely dissapeard. I was still fairly weak from weight loss and i guess being in bed for 11 days but i got stronger and i have had a healthy 10 months or so.

I have had amazing support from family,my partner and the hospital.

Currently i believe im at the start of another flaire up,im taking m6 and there are talks of me going back onto the infliximab .

Just from reading other stories on here its nice to know im not the only one,at times it really does feel like that! Im thankful i can give a name to all these dreaded symptoms and I now have the knowledge there is help out there.

 

[littlefreebird]

hi there, welcome to the forum! sounds like you've had a really rough time!

what was the reason for taking you off the infliximab seeing as it was working for you?

i struggled with crohn's for 5 years until i was put on infliximab, it was the only drug that ever worked for me, unfortunatley it stopped working last year and i've just had surgery. Infliximab works by lowering the immune system but your body will build anti-bodies against the infliximab to protect itself, once this happens the infliximab loses it's effectiveness and eventually stop working. people who have been on infliximab are not usually put back on it as there is a great chance of it not working second time around.

i'm sorry to hear the symptoms are returning, i would definatley keep pressing the dr's, they can leave you waiting sometimes and as you know flare ups need to be dealt with as quick as possible. it's very tough but hang in there and you'll be sorted soon! it's great you have found this forum, we are here for you anytime and its great you have good support at home- it makes all the difference.
take care. hannah.

 

[Terri]

I seem to always see people from here in the USA and the UK who have Crohn's..seems those from the western countries are affected a lot..or are there any from asian and eastern countries too? I'm Japanese-American so that's all I know.Born and raised in the southern states..so you know how that is lol We eat fattening food and stuff that isnt generally good for you lol but it sure is good..all that BBQ

 

[Spooky1]

Welcome, christye,

its a great forum here, i wish i'd found it much earlier. i think its the best one there is. there is always someone one here, in fact, if you look at the general forum threads you'll see there are loads of people all over the world logged on. you can't be alone with that illness anymore! we are here, and here for each other.

hope things settle down for you again soon,

Diane

 

[jasmin.taylor]

Hi C,

This is my first time on the website and I was attracted to your post because we are the same age. After reading through your introduction, I can't believe I've found someone with almost the exact same symptoms as me, diagnoses was even around the same time for me!

University was the same issue for me, starting to loose a bit of hope and friends can only be so supportive right? I've had alot of difficulty opening up to some of my friends.

What are the treatment options for you? Here in Canada I'm on the last string basically. I'm on humira weekly which isn't working the greatest so my g.i is going to add methotrexate to my weekly medicine!

 

[SandyM]

Hi Christye,

Welcome. As Diane has said above this forum is the best place for advice and support from folks who understand what your going through. Have you looked at the diet section - if not it's worth a look. I was told by my doc that diet didn't really matter but after reading what foods are trigger foods and the ones folk seem to tollerate well I can relate to most and therefore will be making some changes myself. So give it some thought if you haven't already.
It's amazing how it seems to take a hospital visit for doctors to take you seriously. If I hadn't been admited all those years ago to have some piles seen to I may well have not been diagnosed either! I find most doctors these days just want to throw pills at you and move on to the next patient.
Sorry to hear of your hard time of it and that you were forced to leave uni - so unfair!!
Hope you start feeling better soon.
Sandy

 

[christye]

Hey, Thanks for the messages back
Hannah- I think it was just bad luck that i got taken off the infliximab,i went away on holiday for 2 weeks and then when i came back my nurse specialist was away for 3 weeks, at my next review they said the results from my colonoscopy suggested i was in remission and they were going to try me just on the m6.

I have my doubts as to wethere or not the infliximab will work again myself,but all i can really do is whateva they recommend and thinks best. Glad your surgery was a success for you and that you are doing well now x

Jasmin- Hey Jasmin,im currently on Mercaptopurine (M6) after i found Azathioprine made me very sick. Hope your treatment starts working for you

 

[scottmyster]

HI Christye, Welcome to the forum, i hope the medication that your on now works for you and again nice to meet you. Great people here at the forum and very supportive and there is a great well of knowledge at this forum. so, if you have any questions just fire away and the forum will respond. best wishes.

 

[christye]

Thanks Scott is good to know Im forever googeling things thinking why is this happening or is this normal??? only to convince myself im going to die withing the next 24 hours so deffinatley good to know theres a place where we can all advise and help eachother