I was 17, but recently we've seen younger and younger people get diagnosed.

I think the symptoms are different depending on what age you are when the disease comes and how much damage the disease had done behind the scenes before its noticed.

If you're in a country with free healthcare I'd really reccomend scheduling a talk with your sons doctor to chat through it.

For me personally it began with dizziness, fatigue and extreme abdominal pain. I let it get really bad and then the rectal bleeding and hospital stays began - but I believe most can avoid that if they catch it in time.

I dont think Crohn's is guranteed to be passed genetically, I believe the science is still out on its cause being a mix of genetic and environmental factors - although studies do show if it's in your family you have a higher chance of developing it.

Thank you for your answer. I really appreciate it. This is a great answer

Another slightly different perspective. I don’t stay positive or happy either but I tend to just become numb to it all, to the point where not much will affect me, just waiting for the next thing to go wrong. It probably isn’t too healthy a way to deal with it but after so much going wrong and cancelled plans and having to take time out of Uni, etc, it does seem like the easiest method. My IBD team have just decided to put me on a liquid diet though, so I will start that on Monday, it’s not something I want but it is just something I will have to get on with.

Ah I really thought you were my mate who lives in Bristol. But the age isn't a match still hope you get better though. Not a match I'm afraid though. Sorry bud.

Wow. Really appreciate your reply mate, thank you. I can't begin to imagine how things are for you but I hope you feel better or at least as well as you can be soon.

I went to Morocco twice, I got sick both times. The second time I never got better, and after a very slow decline I eventually had colitis and Crohn's for years. Whatever it was that I caught in Morocco had altered the makeup of my gut flora. I tried special diets, probiotics, everything, but it wasn't until I had a fecal transplant that things changed.

I definitely feel for you man, those were some hard years. I remember buying Asacol from Mexico because I didn't have insurance. I remember going to a porta potty at a flea market, and seeing a huge turd in the bottom, and being jealous and wondering if I would ever make a turd like that again.

Hey! I have been on both please let me know if you have any questions!

Humira never helped me at all remicade was a game changer. Fingers crossed for you.

Unfortunately since they don’t really know what causes Crohns, they also don’t know 100% how to treat it, so different treatments work for different people, there are a few that tend to be more effective for more people but you never know until you try them. Adalimumab (what is in Humira) worked for me but gave me some of the most unusual and severe side effects it can, like potentially a white matter lesion in my brain. The biologics are still relatively new and they don’t know the very long term effects of them and there are many different types within biologics, I am now getting put on vedolizomab (Entyvio), which works in a totally different way to adalimumab which is an anti TNF drug, the drugs work in different way and different areas of the body, adalimumab affects the whole body whereas vedolizomab only really affects the bowel. Since they don’t know what causes it, it takes time to find what type of medication works well for it.

So it is all very well people saying or recommending what drug worked for them or someone they know, but the disease is so varied that what worked for them might not work for you, any decent GI doctor knows of all these drugs, and should keep up with what new ones come out, and they probably have a much better idea of what is likely to work. It just takes trial and error and that does take a while.

( UK chronie here )

Your specialist or IBD nurse should be able to request antibody screening - I believe before you start Humira. Mine was really struck about it and insisted on re-testing before putting me back on Humira (tried usteki for a while) incase I developed antibodies.

You know your health best & I’m not trying to suggest your specialist missed anything - just that it may be beneficial to request Antibody screening before beginning your next biologic or biosimilar (if you do end up switching).

Sometimes my docs miss one or two things for a couple weeks because we are complex, and the NHS is drowning right now (god bless it). Mentioning it myself guarantees a slightly better quality of care/them remembering - and they never seem offended by my asking.

Wishing you all the best + spoons.

I get asked this a lot !

I don't use cannabis but I use a legal derivative called CBD - it's good as a painkiller and it really dampens down my PTSD anxiety without any intoxicating effects (minor a nice relaxed sleepy feeling)

However, like you mentioned, it helps to alleviate the symptoms temporarily, but I'm more concerned about the internal effects the disease has and it's course on my life and future - cannabis unfortunately doesn't help wit that.

Also I'm not skinny !

People expect those with Crohn's to be frail and lanky but I'm around 180lbs at 175cm.

I try and lift a lot of weights and walk a lot. Also my go to safe foods are calorie dense and not considered healthy lmao. People see me eating potato chips, fries and chicken fingers and assume I'm making my disease worse ! Nothing I hate more than someone fit and well telling me I should eat dense fibrous foods like salads and raw fruit to be more healthy. Makes my blood boil

I hit appeal - I’m sorry this happened to your post. I really appreciated reading the thread.