Living with chronns 33 yrs.

[Josey]

Hi to everybody, I have had chronns for 33years, mainly managed with the usual drugs, steroids ect, two years ago I needed my first surgery bowl resection, felt like I had been hit by a freight train,it knocked me for six! But it was the best thing I ever did! No awful pain when I eat. A recent post op scan showed chronns recurring at the join (the excellent surgeon had warned me that would happen) my gastro. Has just put me on hurmira injections, but unfortunately I am not getting on with this, I have been on twice weekly injections since August,
I do not feel it has helped ( after surgery I suffered lots of loose bowls, my surgeon said I would as I now have less bowl, not rocket science really!) anyway I was frightened to start Humira after reading the possible side effects but had a go, I have just stopped it two weeks ago as I was experiencing really really bad stomach grumbling ( it did not sound human and was getting very uncomfortable) I informed my gastro. Specialist as he said it is my decision! I will now have another colonoscopy in jan. sorry for going on, with me it is very much diet related, and to be honest I would help myself a lot more with a more specialised diet habit. P.s. sister has chronns and mother was diagnosed at 70 years old. Thanks.
:ysmile::ysmile::ysmile::kiss::kiss:

 

[upsetmom]

Hi Josey and welcome

WOW you have had crohns for 33 years. How old were you when you were diagnosed?

Sorry i don't have no advice my daughter was just diagnosed earlier this year so i'm still pretty new to this.

Good luck with your colonoscopy

 

[muppet]

You're beating me by just a bit, I've been going 29 years now, diagnosed at 6.

I've managed to duck surgery so far, and stories like yours make me nervous to ever allow it. I'm sorry to hear that you're not doing well with Humira. What about Remicade?

 

[Angrybird]

Hello and welcome to the forum

Just to confirm have you been on any meds other than the Humira since the op and if so which ones? Do you know how much bowel was removed? I had a resection last year and only had an issue with loose BM's when I flared up again 3 months later....... With regards to diet we do have a sub forum dedicated to this that is worth checking out: http://www.crohnsforum.com/forumdisplay.php?f=17, one of the diets I see mentioned here a lot is the Specific Carbohydrate Diet (SCD), not sure if this would be something of interest to you?

Please keep us updated on how you get on.

AB
xx

 

[KWalker]

Welcome to the forum! Humira can be a scary drug with risky side effects but many people use it with no side effects whatsoever so the risks are pretty low. It seems like Humira might not be the drug for you though if it doesn't seem to be working.

I'm "celebrating" my 20 year anniversary with crohns this year and I'm only 22! I saw you've been talking about diet. I'm starting the SCD diet on January 1st and if you would like to join in, I'd love for somebody else to do it with me and see what kind of progress we make

 

[CLynn]

Have 24 years under my belt here, so I know what you mean about being tired of the meds and wanting to try diet and natural methods. K, I will read up on the SCD diet and see about that.

 

[KWalker]

I hope you do! I'd love to have you join me CLynn

 

[CLynn]

I can't believe you got diagnosed that young! Wow.

 

[muppet]

It happens. My daughter was diagnosed at 3, mostly due to my history. I wasn't diagnosed until I was 6.

 

[KWalker]

yeah for me the doctors thought it was a lactose intolerance and then once they stopped giving me milk and the problems still kept going they did tests and diagnosed me

 

[CLynn]

I got diagnosed in college, so that should tell you how much older I am, lol!

 

[muppet]

Heh. I was 11 in 1988. I was diagnosed in 1983.