Feeling down

[amor151]

feeling down

right......ever since christmas crohns has been fine. i was put on imuran and sent on my merry way and was fine until may. i got a pereanal abcess which was drained and had a fistula drained in july but other than that crohn's was fine. 3 weeks ago i was admitted into hospital as i had lost 6kg again without really noticing anything and was put on a liquid diet, started a course of steroids at 40mg and my doctor kept a close eye on me. ever since then things have got really bad. after i got out of hospital i noticed more pains and serious constipation, i was going 3 days without going and for hours before i went i was in AGONY. i then started to find blood in my stools which is increasing in amount every time i go. i cant sleep (im assuming beacuse of the steroids), often find myself coming home from school and collapsing on my bed for hours and im getting more stomach pains than ever before but the bit that i dont understand is this: i seem to be "alright" when im sitting down but everytime i walk somewhere i get alot of pain. i can just about manage to get from one room to another but anything more than that and i honestly have to sit down before going any further. everytime ive been on steroids before they have worked fine but this time they seem to be doing nothing :S i start remicade tomorrow which im hoping should sort things out but its effects can take 2 weeks to kick in which means 2 more weeks of this? thats if it does work. ive also been told surgery isnt an option as i've too much inflammation in different places.

im sorry im moaning but im really missing school i've managed to go today but i was almost crying in several of my lessons because of the pains. my mates make sure im alright and look after me but its just really getting to me at the minute! i can't play football or go out of school with them at lunch and im way behind in courswork and other things. i dont really no why ive made this thread i just wanted to get some things off my chest after a rough few weeks.

 

[butt-eze]

Sorry to hear about all of this. You might be surprised at how fast Remicade can work. Take time to enjoy the couple of hours you have to yourself. Bring a good book, magazine, portable game, or watch a movie. If you get your infusion at the hospital you can probably order lunch. I've done all of these things. I called it my me time.

 

[rosie]

I got plenty a hugs!! ( HUG ) for you!!

 

[amor151]

thanks for the replies, i had the infusion today which was fine although i had alot of pains shortly after but i dont think they were related to the remicade in any way. am home now and feeling relaxed and generally well. i think that mentally knowing this drug is inside me and hasn't caused any problems has given me a boost and im feeling alot better than i was last night both physically and mentally. i'll keep posting and hopefully i can get back to school 5 days a week with no trouble soon enough

 

[ladyB]

Keep us posted on how the remi is working for you

 

[amor151]

haven't been to school today but am generally already feeling abit better. ive a lot more energy and all the symptoms seem to have lessened. still getting alot of random pains but i didn't expect them to disappear overnight! im starting to reduce steroids tomorrow so fingers crossed that goes alright. will post again soon.

 

[ladyB]

:ycool:

 

[amor151]

another day and im feeling pretty much fine. i managed to play cricket today for the first time in well over 2 months which was a real boost as when im well im playing at least 5 times a week. heres hoping it carries on working!

 

[mrs. vr]

That is wonderful news!

 

[teeny5]

That's great!

 

[ladyB]

What is cricket?

 

[amor151]

its kind of like baseball but lasts a lot longer and is considerably less excting

 

[ladyB]

sounds more my speed...lol

 

[amor151]

haha yeah but some versions of the game can last 5 days! it involves around 4 hours of just standing in a field chasing a ball which does get a bit repetitive after the first hour or so

remicade seems to be continuing its magic touch, im having a BM once a day now which i dont think ive had since christmas! im just wondering for those of you who have tried remicade how long did it work for you? i've heard people say it just "stopped working" and was hoping to get a view on how long the drug could keep me well for. grateful for any replies, Henry

 

[amor151]

thanks pen, i hadn't heard of anyone being on it for 6 years before so it's a relief to hear it can last a long time. now im feeling well ive drastically changed my lifestyle. due to family issues (mainly mum suffering with motor neurone disease) i find myself making dinner for me and my mum most nights and i used to shove a lot of junk food down my throat simply because it was easy to make.

im now making sure i have at least 5 pieces of fruit and veg a day and the meals that i make are hardly ever what i would consider to be junk anymore (spaghetti bolagnaise tonight, yum yum ). im hoping that if i make myself healthier i will stay in remission for longer and thats the biggest insentive i could wish for.

 

[amor151]

yeah my mum is a real inspiration to me. we were told that she would be lucky to be alive by christmas 2005 which was a massive shock at such a young age but it's 2008 and she's still going strong. she's always said that the main reason she is still here is her diet which is evidence enough for me to try eating better! i no diet wont cure crohn's and it will come back but hopefully if im healthier when it returns i can deal with it better and if not then at least i'll just be healthier anyway

 

[Crohns08]

Sorry to hear about your mom being ill, but at least she is still there with you! I'm glad you made diet changes. I used to eat a lot of junk food too and it made me feel horrible. I've changed my diet and just in the week that I have started it, I feel so much better.

 

[theability]

I am prosing the thread and seeing that the remicade is working for you, how are you feeling after all?? How long has it been since you started the treatment?

I am really interested to find out the positive changes that are going on in your life....!!!!

 

[amor151]

i started the treatment last thursday (having 2nd infusion on thursday of this week) and i felt much better the next day. ive felt almost symptom free ever since and am having only one or two BM's a day. i am beginning to feel afew symptoms come back though as time passes such as the pains and going to the toilet more frequently.

 

[AndyCrohnsPatient]

Same im with you. Im in pain all the time, missing school getting behind. I wish I could fix this problem but it stinks. School is hard enough without having to do with these pains.