struggling with recent diagnosis of crohns disease

Hi seems only fair that I share as well as ask advice I Was diagnosed about 5 years ago I was rushed to hospital for suspected appendix after week of tests inconclusive they were going to operate when another doctor suggested it could be bowel related so I had a colonoscopy for the first time and they could see swelling in the bowel I was diagnosed with chrohns you will see from my own posts they start you on high dosage of drugs predonisolin steroid based and I am now back as I was when I started 8 pentasa they also gave me a laxido thick med that had to be drunk I couldn't stomach I thought I knew best kept swapping meds as saying they weren't working as I was still in a lot of pain etc feeling bloated stomach cramps .finally I took myself off all meds and went just over 12 months without major problems cracked it .not as of Friday pain was awful no control over it all now back at the beginning on like you steroid based pred tablets and 8 pentasa again so it's a disease that likes to keep you on your toes I don't recommend coming off meds but if you have to take a laxative based med like I did you can take a 5 ml senekot tablet which is totally safe easier to swallow it less bloating to as for how people treat you that's how you let them if you act like the victim and sick patient they will treat you like that as the meds become more balanced with your body you will find you can lead a normal life try to avoid spicy food or to fatty food that's my trigger coffee seems to be for a lot of people I switched to tea. It really helps to talk as I get down as a result especially at the moment being back on my meds and such high amount but this site is really helping knowing your not alone and it's not the end of the world, but I can say for me I lead as normal life as possible I eat what I want when I want it if I eat something I know disagrees with me I just know I will spend the day after with one of my closest friends the toilet bowl but I still play sports work and have a loving family it don't change anything like that unless you have to have blockages removed etc but it depends how severe you get it most people who stick to meds can go years without any problems and pick up tips on the way hope this helps 😊

Hi I have suffered with this disease for many years, I was first told I had IBS . It's horrible and does affect all aspects of your life. Try to avoid stress, hard o know. Diet wise I avoid alcohol, dairy(I have soya milk) all fibre I.e brown bread, brown rice wholemeal pasta. Also keep fruit and veg to a minimum the seeds in tomatoes and skins on them and things like peppers and cucumbers can irritate the gut. Fish is ok for me so is chicken and turkey and potatoes. Keep fats and fried food to a minimum. So you really need a boring and almost unhealthy diet until things calm down them start to try (slowly) more veg, fruit and salad and see what you can tolerate. Meds seem to be different for everyone and can take time to get right. Hope this is a small help to you.

Hey

I've been diagnosed at the age of 10 and now 8 years on I'm doing okay. To be honest the first few years were pretty tough for me due to the severity of the disease. I was told I couldn't eat anything for 4 months so that my gut could rest. That then didn't end up working so then they put my on a high dose of steroids, on and off on and off. This also didn't end up working. They also gave me some other medications which guess what... Wasn't working

I had many endoscopy and colonoscopys and MRIs done. And not to mention the uncountable needles.

So recently I had my first surgery which was a dramatic life changer. I didn't have pain, vomitting, lack of appetite an bloody Dihorea. However months went by and now I have crohns again. I did kinda kick my self and think why me but then I realised I'm just special. I am unique.

I have now learnt to cope with the symptoms by changing my lifestyle and diet

So I wish you all the best, good luck

(Don't be alarmed by my story, I've seen way worse)

Hi my names James I'm 22 and diagnosed 18 months ago.

I know how you feel and have had my own battles with depressive thoughts but it can and will get better.

I'm currently writing this with a shot of humira next to me knowing full well that when I finish this reply I'm gonna have to press the button and endure 10 seconds of intense burning lol.

The consultant has told me we are out of options and a resection is on the cards, which to me is a good thing I know a guy who had remission for 15 years after a resection.

Regarding your friends be as open as possible trust me talking sh*te is dead easy really ;-) they will respect you for putting a brave face on things and you will become a stronger person for it. The best way to describe crohns is a an invisible illness just because I look healthy doesn't mean I am.

Avoid alcohol and acidic food. Just a personal thing that I'm sure applies to fellow crohnies.

Hope this helps chin up.

Damn I hate injections

Thank you all for your replies it all helps its nice to know people are going through the same things and im not alone with it anymore