New here- 14 years with Crohn's Ileitis

[CrohniePilot]

Hello,

New to the forum.

Here is the readers digest version-

I got Crohn's 14 years ago but was undiagnosed for roughly 5 years.

I'm on Imuran and Pentasa, and starting to think that my stricture may be getting unmanageable. I've always hoped to delay surgery as long as possible. Anyway, that's what got me here is my realization that I may be coming to the end of the pre op era.

Glad to be here.

 

[David]

Welcome to the forum, I'm really glad you found your way here I'm sorry to hear that your stricture may be getting unmanageable Where is it located exactly?

We're here for you anytime you need us.

Take care!

 

[CrohniePilot]

Thanks David,

It's in the terminal ileum, only one area (that I'm aware of). Historically, when I would get a blockage, I could always trace it back to something stupid I did like not get enough sleep or eat like crap. This last year it seems to be much more unpredictable, and when I have gotten a blockage, it seems like it is taking a lot longer to pass.

Again, I appreciate the support! I'm feeling quite a bit better this morning.

Patrick

 

[David]

Hi Patrick,

I'm glad you're feeling better As I'm guessing your stricture is scarring in addition to inflammation, I've got to ask if you have had your vitamin B12 levels tested. The terminal ileum is where B12 is absorbed and with scarring like that, chances are high you're not getting enough. Proper supplementation if you are indeed deficient (many with Crohn's Disease are) is very important.

 

[CrohniePilot]

That's a great point David. I had it checked a few years ago, but I should have it checked again. Thanks!

 

[David]

You're welcome. The liver can store up to 5 years worth of B12 in a healthy individual so if you haven't been absorbing enough, you may have been withdrawing from the bank all this time and overdraft fees might hit you anytime. Better to be safe than sorry

If you do get it tested, please let us know your specific levels if you're comfortable with that It's a good idea to get your exact numbers so you can track them over a long period of time and correlate them with symptoms and overall health.

 

[Angrybird]

Hello Patrick and :welcome:

It sucks to hear that your stricture is not settling, I assume you are seeing your doc about this? Have they done any tests/scopes to see how bad it has gotten and confirmed that surgery is now required?

It is good you have decided to join us as there is a lot of advice and support here from a great bunch of people

Wishing you well soon

xxx