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My Story so far

J

Jack85

Hello everyone

Just wanted to share my story so far with you all if that's ok. So basically I was diagnosed with Crohn's disease 2 weeks ago today I'm a 30 year old male living in Ireland. So far I'm finding it very daunting and scary to think I have this condition for the rest of my life but hopefully with help from yourselfs getting to know my disease I will lead a happy long life (no pressure:)

Ok so for my this whole thing started about 6 months ago l, the odd cramp in my stomach every now and again to dioreah. It came on pretty quick and a lot more frequent as the weeks went on, to the point of going to the toilet up to 20 times a day cramping agony in the night times mainly and on the odd occasion being sick. Then it stepped up a gear about 3 months ago I got a really bad fever one night I was actually delirious according to my partner who had to carry me into a cold shower. Continual vomiting for a few days which all the while I was losing weight at a rapid rate. After that it stepped up another gear. Infrequent bouts of fever. Night sweats every night about 10 or so mouth ulcers appeard(never had one in my life before) then the joint pain came... WOW that was the worst! My knees would get so bad I couldn't walk down the stairs! At this point I had gone from 13st 4lb down to 10st 10lb I couldn't eat, sleep do anything! I had zero energy to even pull my head off the pillow in the morning! This bring us up to about a month ago. After going to my doctors 4-5 times to A&E(ER to anyone from the states) they finally made me an appointment for a colonoscopy which I had 2 weeks a ago(BTW moviprep is hell on earth lol) they instantly diognosed me with crohns I even saw it myself on the to screen my bowel was lovely and pinky then this one section was just horrible! So I spent the next week in hospital on steroids through the vain as well as flagyl buscopan mesalazine folic acid! They did a CT scan which they found I was very inflamed in a lot of places. At the moment I'm feeling much better I'm still on steroids(prednisone) for the next 2 months they have kept me on the mezalazine granules still on flagyl for the week I'm on k slow for potassium calcium chew for my bones folic acid and a new tablet called Imuran tablets I think there an anti immune tablet I'm on 2 50mg tabs of that a day. It's all been very over wealming for me. Now as I said I thought this had started 6 months ago but apparently not! I had to have surgery for a pionidle sinus in March 2014 then surgery again for 2 fistulas in October 2014 apparently they are linked tho crohns according to the gastro Doctor!

Sorry for the big long essay just be glad to speak to and get advice of people suffering from it, any particular tips would be great and generally just some people to talk to. Knowledge is power and I want to give myself the best start to live a normal life

Thanks for taking the time to read this and I look flawed to your reply :)
 
Robrich

Robrich

Location
SoCal
Yes sounds like Crohns for awhile.
Now they are treating it and hopefully will get you under control and in remission.
You should learn as much as you can about diet and see what works for you.
PALEO, AID etc. LOTS OF INFO HERE.
SUPPLEMENTS ALSO
VIT D. For sure as I've not heard that Ireland is the sunniest place.
Give your current protocol a chance.
Steroids, immune suppressants and biologics are the main therapies but there are others.
Just learn to take good care of yourself, avoid stress and keep abreast of your condition and medical options.
There are many new treatments coming like anti map.
Good luck
 
J

Jack85

Thank you robrich. Lots of info on here already which is great! Still a large amount I don't I don't understand but over time il get no what works ect.

One thing I don't quite get is the remission. Am I in remission now or are the steroids getting me into remission. Like will a doctor tell me I'm in remission or will I just know because il be feeling normal? Sorry if that's a silly question btw
 
Robrich

Robrich

Location
SoCal
Doesn't sound like you are n remission yet.
To be in remission inflammation should be gone, e.g. ESR normal, scope clear.
Symptoms should be mild to none.
If you feel close to normal that's a good sign.
Lots to digest about this disease.please Forgive the pun.
 
J

Jack85

Ha ha funny. Thanks again. I guess time will tell how the new tablets go I think the doctor said it will take a couple of months for the immune suppressants to work. Is it common to be very hungry all the time on steroids? Since Iv left hospital I can think about is food.
 
Robrich

Robrich

Location
SoCal
Yep steroids increase appetite and insomnia and anxiety paranoia and irritability so be careful about over reacting. Oh I forgot your Irish they never get angry or over react.lol!
And go easy on the spirits.
It does take 3 mos or more for the immune suppressants to work and then it's like 50/50.
If you are not getting results after that you may want to add REMICADE or Humira to the mix.
 
Justanothercp

Justanothercp

Location
Sacramento
Jack 85,
It is all a little daunting and overwhelming at first. Hang in there, educate yourself and try to stay positive. I've been living with Crohns for 25 years and I'm still learning and adapting. But I have an active, happy life. I take a lot of meds, really watch my diet and have had one resection. But, life is good.
 
J

Jack85

Were a very calm race we don't get angry or drink:D Iv actually given up drink while I get this under control. Before I knew what I had I went on a night out bad about 6 bottle of coors light and was so ill for the next week I haven't been able to touch it since!

I take the steroids first thing in the morning and thankfully I have been sleeping ok. I have some much energy I'm constantly looking for something to do but my doctor warned me about that and I have got caugh were I do to much and get so exhausted and aggravate my knee joints. I'm still learning my limits though! I think I have the mentality were I want to feel as normal as possible and pretend I dont have this and exceed my limits. Sonthing I need to work on

It's really nice to hear that it is possible to live a normal healthy life for long periods of time. With all the negatives Iv read on various other website there seems to be a lot more positivity on this forum which is important for me at this early stage.
 
T

Thunderguts

Hi Jack! Gawd that's a bad way to start a post 😂 But sending support from another newbie to the site. Steroids have done me wonders over the years and have kept me in remission for really long periods of time so there's hope. Just be kind to yourself, don't feel bad about resting and knowledge is power for you and your family. It's a tough old slog this bum ninja of a disease but you'll soon be old hat about learning what works for you and how to deal with things. Take care on those steroids, I was hyper cleaning lady one week, raving banshee the next so be gentle with yourself 😊
 
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