What is your Crohn's disease story? Let's share!

@Courtney_J Hi, I was diagnosed in my late teens. I always had digestive issues and I just assumed that I had lots of intolerances or allergies. Eventually after a really bad period in sixth form my parents took me to a gastroenterologist and I was diagnosed. I had an operation in early March for a blockage that was horrible, and now I take Stelara and a few vitamins because i also have an iron deficiency. I really try to work on my stress because that's what really causes a lot of my issues, so I do a bit of yoga and other breathing exercises.

Hi everyone, I was diagnosed in July last year, I had symptoms of bad dirrehea, nausea, tiredness, fatigue, vomiting etc of roughly a month or so and I lost just under 2 stone in that time. I went to my gp first and done bloods and was referred to A&E due to the results where I underwent tests for 3 weeks roughly, started on infliximab witch failed me, ended up getting part of the bowel removed, got a recurrence on the surgical site 6 week post of and have been on three other immunosuppressiant medications since. I am currently receiving a transfer to a different hospital and I'm feeling good on the current medication but I am having no relief of symptoms and I am take multiple tablets for all the side effects also. I'm wondering has anyone else had similar problems and what tablets helped you? 

@Beastoukoor3091 hi have you tried vitamin b eztra strong compound tablets they help great with the fatigue also vitamin d maybe and maybe ask around about other vitamins and ask your crohns doc about azithaprine (soz dont know if thats the correct spelling lol) hope this helps

@Drugrivachack697 I take multiple multi vitamin tablets daily. Only received an infusion of a point of iron and I am on vedolizumab for treating the crohn's disease. I currently take about 35 tablets a day on top of infusions and have no relief of symptoms with a complete diet change also to the recommended diet with crohn's . 

@Beastoukoor3091 I've had similar problems as well. I pay a lot of attention to my diet and I've been on azathioprine for a while and it's stopped helping. 

 @Beafoas3‍ when it comes to Azathioprine i have been on and of it too for many yrs since about 17 i am now 31 the doctor would say i needed blood tests every month with it but i was rarely getting sent for blood tests was more like twice a year maybe 3 times i would find that i didnt really notice anything affective on them except some of the side affects so every now and then i know your not supposed to but i got so fed up with not having blood tests when they were supposed to take them and felt like i was getting lost in the system and fed up with the side affects i would stop taking them for a few months till the doctor actually made time to make sure to do the blood test and i would inform them too but even though i have been on and off them for many years i only googled a question about Azathioprine a few weeks ago and it said something about your doctor should only prescribe them for a short time for like 18months or something like that then unprescribe them for a short while because with the tablets apparently you need to have short breaks off them if your supposed to be prescribed them for a really long time or the longest you should be on them with out a break is about 5yrs. But i think its best if you google something to do with this so you can look it up for yourself. And if you notice hair thining or falling out its to do with these tablets unfortunately 

Hi everyone, my mum has only just been diagnosed and it has taken a very long 18 months and constant pushing and complaining to get a final diagnosis of perianal Crohn’s disease and we have just started infliximab treatment. She has lost huge amounts of wait is severely depressed as a result of the constant need to go to the loo the pain and soreness that I see everyone has said about on here. I have to say a sitz bath and pure baby wipes are a god send in helping her, but I’m flabbergasted at how long it has taken to get to this point. And the amount of doctors and specialists it has taken to get a diagnosis. She has just spent 6 weeks in hospital as a result of the Crohn’s disease taking hold and a major flare. Really just wanting to know if other sufferers have seen good results with infliximab as I’m not sure she can take much more of the pain and isolation. Thanks in advance

A few years ago I was on infliximab, I took it for 18 months and it worked wonders for my crohns, hang on in there it takes time, I hope your mum gets some relief soon

ive just began a biological drug called vedolizumab so fingers crossed it helps with my current inflammation 

Hi everyone,

How are you feeling today? 🙂

I thought I'd revive this discussion by inviting more members to share with us!

What is your Crohn's disease story? When and how were you diagnosed? Would you mind sharing your story with us?

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Feel free to share here!

Take care,
Berthe

Hello everyone,

each Crohn’s disease journey is different, and sharing your story can help others feel less alone and better understood.

When and how were you diagnosed?
Was it a quick diagnosis, or did it take time to get answers?
And how has your journey been since then?

Please feel free to share your experience with the other members. 💛

Take care,

Somya from the Carenity team 🌼

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