Just diagnosed

[Bean]

Hi all, I've just been diagnosed with crohns disease and im finding it difficult to come to terms with my future. Im 39 years of age. What I'm hoping to find from this thread is this - is there life after crohns??? I know there's no cure but is it actually possible to live a normal life again and not have crohns be on your mind all the time.

I'm on infliximab and I'm not sure how long I'll be on it for. I heard that you can only be on it for a certain amount of years. What happens after that? Are you left dealing with flare ups all the time??

I would be grateful to hear from anyone who might help me see there is light at the end of the tunnel!!!

Thanks all
E

 

[muppet]

Remicade seems to work an average of 5 years for most people in my experience, but there are exceptions.

Did your doctor put you straight on Remicade without trying Asa drugs, or Imuran? Why?

Yes, there is certainly life after Crohn's, but no, you can never ignore your disease. Lots of people try and it only invites trouble.

That's not to say you can't run a marathon if you wanted to (as long as you're in shape), but to do so you'll probably be on a drug and diet regimen.

 

[scottmyster]

HI Bean, welcome to the forum, i have had crohn's for 21 years and counting and there is life after crohn's. But, there will have to be changes. if i were you i would start with a diary and write down the foods that cause you grief and the ones that you don't.It helps keep track of you diet intake. The worst thing about crohn's it can flare up at anytime and it remains unpredictable. But in you case it could only be mild which is good. if the medication works for then that is a very postive thing. i know some people are terrifed when they get diagnosised but life isn't over you just have to adjust to somethings. but, it can be controlled by medication and diet. it all depends how made the flare up is and it may last two weeks or a month who knows. but, you will find comfort in this forum because your not alone anymore and this forum is very supportive and with a great world of knowledge, so ,if you have any questions just fire away i am sure the forum will respond. Best wishes

 

[Astra]

Hiya Bean
and welcome

I was dx at 42, 6 years ago,
I was sooooooooo relieved that I had a name for it, so I embraced it!
My life isn't over, it's only just begun!
This disease needs time, time to adjust, time to reflect, time to organise.
Once you've done that, it's manageable, not so much controllable, but just keep it in the day, concentrate on the here and now, the future can wait!
I wish you luck on this journey, you'll be ok.
and we're here to support you
lotsa luv
Joan xxx

 

[littlemissh]

Joan, what you say is so true. I am starting to realise this. Crohn's needs time to show it's true colours and what will work for you as an individual. Only then can you become more comfortable with the routine and the ifs and what's.
This is a short journey for some and longer for others.
It becomes less stressful when you know where you stand and what to expect.....even if that is the unexpected .. Lol!!

 

[Astra]

Yes, we're creatures of habit!
Routine and consistency is the key!
Or maybe it's cos I'm so OCD!

Hope you're feeling much better now littlemiss?
xxx

 

[littlemissh]

Hi Joan,Unfortunately my leg adventure has messed with my crohns..ibd nurse wanted me to go in when i spoke with her tonight...I said no..bad person...husband annoyed. I am feling someone has pinched my good luck.
Brief summary on my treatment thread about biologicals...don't want to hijack Mr Beans thread - sorry Rowan!!

 

[Bean]

Hi all, thanks so much for all your responses, its so nice to know I'm not alone.

I suppose this is the start of my journey and I just need to find my feet. I'm at the bottom of the mountain looking up!!! I'll get there

Muppet I'm not sure why the docs put me on infliximab first. He tried perdisalone but they weren't working fast enough. The infliximab is working great so far I must say, my energy levels are getting better.

Thanks again everyone for your replies, I'm sure I'll be in touch with you soon again!

Bean

 

[archie]

Hiya Bean I thought that last year when I was diagnosed at 36, but after educating myself about the disease and getting treatment and surgery last year i'm now much better. I count myself as one of the lucky ones getting diagnosed quickly and later in life and getting the correct treatment straight away I haven't had too suffer too long.

I'm in remission but I still get good and bad days but i've just learnt to manage these and there are def more good days than bad days you just have to establish whats 'normal' for you. I've learnt that occasionally I can't do everything (most of the time I can) and I now have to prioritize and occasionally say no to things but i've a good support network which helps a lot. Good luck

 

[Bean]

Hi Archie, thanks for your reply. I too was diagnosed very quickly so I'm grateful for that. It was very reassuring to read your thread as I feel I'm in exactly the same place as u were last year.

Are you no longer on any medication? One of my main worries about this mountain I have to climb is the thoughts of having to take a bunch of tablets every day for the rest of my life. I'm on infliximab now but I can't take that forever. Like what happens after infliximab? Sorry if I'm bombarding everyone with questions here!!!!

 

[archie]

Hiya bean just after I was unofficially diagnosed after a CT scan I was referred to a GI whilst I was waiting for his app I developed an abscess which perforated my bowel which luckily for me did not require emergency surgery. I was told by the surgeon though that i would need planned surgery to remove 1 ft of damages bowel after i recovered. I was taken to hosp and given IV antibiotics for a week then put on pentasa and pred 40mg I remained on these for 5 months and felt a lot better than I had in ages. I HATED taking meds but they wouldn't take me off them til I had the surgery. So I had a resection last nov and since then have been off everything and feel brill. It took a lot of persuasion for me to have the surgery bit now I'm so glad I did. Recent scopes have shown mild inflammation/ulcers at surgery site but nothing that requires meds yet. Iight need them in the future. I'm currently taking Nexium for duodenitis and OTC vit B 12 but so far so good. I hope you don't need surgery but don't be scared of it if you do it has got me into remission. What extent is your crohns and were is it? I'm not too sure of all the Meds available but there are sub sections on the forum which might help answer your question. Wishing you all the best.

 

[Bean]

You've been through a lot Archie by the sounds of it and you have such a positive attitude. I can't help but admire you.

I didnt have any major symptoms up until about a month ago when I thought I had gastroenteritis. Looking back now though I hadnt been feeling well for months but was on autopilot I suppose. After being prescribed antibiotic after antibiotic by my gp with nothing working I ended up in A&E and after a colonoscopy they were able to diagnose crohns. I was lucky it was diagnosed so quickly. The infusion I'm getting now is working so please god I won't need surgery.

I suppose I'm overwhelmed by the whole thing, it all happened so fast. I was healthy one minute (or so I thought) and the next im not.

Thanks for your replies and I wish u all the best too. Great to hear ur doing so well

Bean

 

[archie]

Funny mine started as gastritis after being totally healthy now after it all I still have a touch of gastritis!!!! Bizarre wonder what the 40's will through at us!!!!!

 

[Bean]

You know what they say, life begins at 40!! Here's hoping it's true

 

[Cecilia]

Hi Bean

I'm just diagnosed to. I feel hypersensitive and finding it hard to balance life now. It sounds really crazy but the time I spent wondering "what's going on" seems so much better than this. Im grateful for the diagnosis but.... It's like denial or something.

I hope you are doing well on your meds, I wish you the best...Feel better

Best,

Ceci