Feeling a little blue today!

 

Hi guys

Just needed to get on here to vent a little.  I am feeling a little blue today. I had a GI appointment this morning and even though I knew what to expect it still kind of hit me that yes i DO actually have Crohns (only diagnosed early April).

I guess because I have been responding so well to the Predisone treatment so far and seem so unlike many Crohns people that I know that maybe they had just made a mistake (ha ha I know you probably have all thought that at some point!).  I mentioned this to the doctor but unfortunately it is not so (even though deep down I already really knew that).  Even though the gastroscopy and colonoscopy that I have had recently shows Crohns the doctor said that CT enterogram that I had a couple of weeks ago also confirms active Chrons - good news I guess is that it is only in the terminal ileum approx 12cm in length, no evidence of fistula or abscess formation. there is mucosal enhancement and bowel wall thickening and narrowing of the bowel lumen in this area. But no evidence of Crohns involvement elsewhere in the small or large bowel.  Also blood tests came back 2 out of 3 things positive (cant remember what they were called) which apparently also common in Crohns!!

So why am a bit blue is because now we have to start the next stage of treatment with Imuran tomorrow (starting at low dose of 50mg daily for the next four weeks whilst tapering down off the predisone also - staying at 25mg for next 10days, then down to 20mg for 1 week, then 15mg for 1 week then 12.5mg for 1 week and then see GI specialist again and review)  I guess because I feel quite stable at the moment I am a bit nervous about starting this new medication tomorrow - The doctor explained all the side effects that can occur with this medication but I really dont have any choice I have to start a maintenance medication (which he tells me I will need to be on for life!) as you cant stay on predisone for too long.  Obviously if this drug doesnt agree with me he will need to review it sooner than that and change to something that will work.

I know you have all probably felt this way in your early stages of diagnosis and I know what drugs work for some dont for others - i guess its just fear of the unknown!!

Wish me luck

DREAMLADY

 

I understand how you feel. I call it feeling brown. I am just off my normal took at the bright side and a little sad. And going to the bathroom many times during the day! Medications are something that you get used to and it sure beats ignoring your disease and having it kick your butt. There are many people here that can tell you their stories about ignoring the disease. Hang in there and I am crossing my fingers that the medicine works and you can get off pred.

Thanks so much for the words of encouragement everyone. I know that there is life beyond Crohns (I have a sister who has been battling it for 20yrs!) and I know that I have so so much to be thankful for in my life - 2 wonderful amazing daughters and a great husband and loving extended family and friends. Guess I was just having a down day yesterday (luckily I dont have them too often!) I guess this is just all new to ME at the moment and still trying to get my head around all the changes and adjustments that I am having to make in my life. I know how important medication is in treating this disease and hopefully I will be one of those who experiences few side effects! Its great to know that you all care and know what I am going through but I am definitely determined to live a very full and happy life with or without this disease

DREAMLADY
46YRS female from Australia
DX. Crohns early April 2010
Meds: Pred 25mg tapering, imuran starting today 50mg to start, coversyl 10mg, somac 40mg