Crohn's - Help

[wadders2121]

Hi i am new to this site so any help/advice would be appreciated.

My story - This all started approx 5 years ago, after going out with work for a curry (beef madras) and a few beers i went back to the hotel and didnt sleep a wink. I had extreme pain all night and spent a lot of the night on the toilet! I put this down to food poisoning but after 2 weeks of going the toilet approx 6 times a day i went the doctors.
Initially i was advised that it was bacteria causing the constant trips to the toilet and was given Loperamide hydrochloride to take which after a few months pretty much stopped all of the symptons.
I was passed to a specialist and after an MRI scan and a few colonoscopy's i was diagnosed with Crohn's, at the time of being diagnosed my symptoms consisted of going to the toiler 2-3 times a day and some tummy ache at night (felt like trapped wind) but other than this i was fine, the toilet visits would be mostly in the morning.
I have tried a few different medications but all have made me a lot worse so after a few weeks i have stopped them. I refused to take the steroids and i have now been asked to take Azathioprine which i am very wary of taking.
The specialist has said my Crohn's is very active and inflammed and she thinks i am down playing my symptoms, I am currently not taking any medication.

I am still an active person, i play golf a few times a week, i have a little lad and i have never taken a day off work due to Crohn's. I travel on holiday a lot and do a fair amount of corporate entertainment in work.

What i am trying to find out is how do my experiences compare to others? also do you think its worth going private as i feel my consultant is a one trick pony (crohn's)!!

Could do with any advise so any help would be appreciated.

 

[Tuff]

Welcome to the forum. I think untreated Crohn's is very dangerous.
My doctor showed me pictures of the insides of my intestines after my colonoscopy, so I could see the damage. Too bad your doctor didn't do that. After an MRI and a colonoscopy, they can tell if there are problems. The inflammation is going to continue to damage your intestines, and in the long term, you may need surgery to remove the damaged parts. If it's very active, it's not going to get better on its own. A second opinion would be a good idea, if two doctors are telling you the same thing, maybe you will accept treatment. Don't wait until you're in the hospital.
http://www.mayoclinic.org/diseases-conditions/crohns-disease/basics/treatment/con-20032061
:ghug:

 

[David]

Hi there and welcome.

I understand you are wary of taking the more powerful medications due to the potential side effects but as Tuff said above, untreated Crohn's is a very bad thing. Chronic inflammation in the intestinal tract eventually turns to scarring which is when the REALLY BAD stuff starts. I assure you, you do NOT want to get to that point. You need to get the inflammation under control.

 

[Honey]

Hi there, and welcome,
Yes, I understand your concerns about side effects of meds , I had the same feelings. However, if the inflammation levels are high as shown by blood tests and Calprotectin test, then you do need to have treatment. I did have to agree to many different trials , including steroids and eventually Remicade infusions, but now there is good news! I have been symptom and pain free for over a year. I would advise you to talk about your concerns and fears, to your Consultant. Ask plenty of questions too, I did. It helps if you are fully informed about every stage of your treatment! I hope I have been of help to you. Let me know how you are. I am off the infusions!
:rosette1::welcome::rosette1: