So ill, now Crohn's?

[Daisymae]

Hi all, honestly, I thought I was done with support groups. I have had sarcoidosis since 2006, in lungs, heart, etc. and somewhat recently have suffered a terrible flare that saw me on oxygen therapy and all sorts. I've even had an implanted defibrillator since 2007. Anyway, I had ended up in hospital in sept 14 with terrible nausea, vomiting, etc and found out I had severe malnutrition (only anaemia was known prior to that). I have been on steroids and methotrexate since for my sarcoidosis but my gastro kept wanting to get to the bottom of things. Well, today he told me I probably have Crohn's. They found a load of strictures on my capsule endoscopy. I've had loads of scopes in the past, have had coeliac disease as well since 2006, but this is new. The strictures are ulcerated. I did take loads of NSAIDs for a couple of years with my sarcoid, but haven't had any in well over a year, so dr thinks Crohn's is what it is. I'm not even telling my son about this as we don't know for sure, but I believe my dr. For many months they talked about my sarcoid possibly affecting my gi tract, but this makes more sense. Sarcoidosis is also a granulomatous disease, immune related, etc..but very rare in gi. Dr said he would normally put me under general anaesthesia and do a long double balloon scope thing (?) with biopsies but because I'm already on treatment (steroids, etc,) and things have since stabilised he doesn't want to put me through it. Anyway, I'm not sure how I can handle this extra diagnosis, and seriously, I've recently tried to take a break from all my illness stuff, but i guess that's not going to happen now! No real questions now, just needing to vent. Thanks for reading. X

 

[DJW]

Hi and welcome.

I don't even know how to respond other than I'm sorry you're going through so much.

Sending you my support.

 

[fuzzy butterfly]

Hi Daisymae. Im sorry your going thro all this hun. We are here if you need us ask away if you need too. Sending best wishes n support your way. :hug:

 

[ronroush7]

Welcome. I am sorry for what you are going through. You have come to a good place. Feel free to share when you need.

 

[scottsma]

Talk about kicking a person when she's down !!! You're really having a tough time.
We're here to advise and support you when we can.In the meantime,feel free to give vent and have a good old whinge,it's good for you and for us.Feel better soon and keep us updated won't you ?

 

[David]

Welcome to the community. I'm sorry to hear about everything you've been through; I can't imagine how rough it has been. We're here for you anytime you need us!

 

[valleysangel92]

Hello, welcome to the forum. I'm glad you've found us, it sounds like you've had a lot to deal with and this stuff is very hard to deal with alone.

I was diagnosed with coeliac at 14, so I understand that, having the combo of coeliac and crohns certainly makes things interesting. I've lost count of the amount of times I've had to persuade doctors that I'm flaring and that I haven't eaten gluten.

I hope you are under a good team, having a doctor you trust is so important, especially with long term illnesses where you'll be seeing them for years to come.

Please feel free to come and vent whenever you need to, check out the support forum if you like, there's lots of posts from people in similar positions and you can create your own post too. If you do come up with any questions please don be scared to ask. There's no such thing as a silly question and we're all in the same boat so no need to be embarrassed.