Newly diagnosed and feel misunderstood

[mamak]

I was diagnosed 7 weeks ago with Crohns and have felt so isolated! Not being able to get away from a bathroom, and when I do get out the Fatique gets so bad, if i over do it i am in bed most of the next day. I have lost 20 pounds and counting and when I do go out I hear well you didnt eat much...you need to eat! I try and eplain but it seems it is on deaf ears. My husband has been supportive but I know when he gets frustrated when i am having a flare up.
I am not working at this time and I dont understand how one can. Enlighten me please! I am on alot of vitimins, just got off steriods and am taking Budesonide...which some days I cant tell is helping. Humira is my next step. Which i go back in a week to see my GI.
Some days the pain oh the pain....what can one do!?

 

[Angrybird]

Welcome mamak, I'm really sorry that you are having such a hard time. How long have you been ont the Budesonide? Some medications can take 4-6 weeks to fully kick in. This is part of the steroid family but gets used as it is not as 'invasive' on the system compared to meds like Prednisone. I was diagnosed with crohns over 9 years ago and at one point was about 2 stone underweight. Has anyone suggested to you about doing a liquid diet - such as Modulen, followed by a lowflex diet? This can sometimes help determine what foods exacerbate symptoms and may help eventually with your appetite. I am lucky that despite having some short peroids of absence I have been able to continue to work and have very understanding employers. Whenever I do start getting tired my knees will start to hurt and I will just need to make sure I go to bed earlier than normal. With regards to the pain sometimes a heat pad or hot water bottle can help or maybe trying paracetamol. Don't go near Ibuprofen as this is not recommmded for people with crohn's. I hope this helps but let us know how you get on.

 

[Jessi]

Hi Mamak and welcome to the family! You are not alone. We're all in it together. :hug:

Humira may help you with your pain, too. I take Remicade, and my pain has immensely decreased. So I have high hopes for you. We have a Humira sub-forum where you can ask questions and chat with others on the same treatment. http://www.crohnsforum.com/forumdisplay.php?f=59


I really hope the Humira does the trick for you so you can live life to its fullest again. It's good that you're taking vitamins, but I highly recommend taking an additional vitamin D. (If you're not already.) There isn't ever enough vit D in multi-vitamins. Vitamin D is a disease fighter. :arghmatey_ani:

 

[hangingon]

hello Mamak! hopefully humira will do the trick for you. :ysmile:

 

[David]

Greetings and welcome to the forum. I'm sorry you're having so much trouble, you poor thing *hugs*

You mentioned you're taking a lot of vitamins. Which are you taking and how often?

All my best to you!