So sorry to hear that you are having such a hard time. Crohns can be like that, cant get out of bed one day and ok'ish the next. You will eventually learn how to live your life around the illness. I agree with some of the other postings, that you should try some different drugs - those traditionally used for treating crohns before trying anything trialed.
The hair issue, my hair shows signs of stress when Im in a flare such as falling out and becoming brittle. My hairdressers always knows when I am taking steriods because my hair changes, I never have to tell her.
Talk some more to your doctor about treatment. and good luck keeping smiling (if you can)
I'm also relatively new to this forum - but already I've found it hugely supportive and very very informative...
If I may suggest...
1. start an intake diary - everything you eat...if you are one of the lucky one's you should be able to begin to see patterns around what you eat/drink....some of us are dairy intolerant, some wheat, some fiber...some coffee, some soda....some can eat raw foods, some can't etc
2. Also record your menses and how that affects your Crohn's (turned out to be a huge factor in my case)
3. Find a way to make sure you get enough sleep (for me it's a minimum of 8 hrs a night) - if you don't sleep you don't heal...and being well rested helps you keep your stress levels down...
4. You have to become a personal health advocate for yourself...
5. Read everything you can get your hands on about this disease and develop a sense of "pooh" humor
6. Cohn’s can and will affect all parts of your body and your life...so learn to really stress the positive in your life and bide your time when the proverbial hits the fan (my family calls it my Zen periods as I am determined to live my life as best I can around this disease)
7. I'm CDN as a result the medication most commonly prescribed at first it salofalk...I've been on it for years and been successful...but there are side effects...one of which is hair loss..so I now shave my head daily in a successful attempt to stop being self conscious about it
8. Don't be afraid to ask questions and don't take anyone's response as gospel...there's no such thing as a dumb question...besides we're all flying by the seat of our pants here as there flat out isn't enough money being spent on finding out the definitive cause of this disease...the commonality seems to be pain - strive every day to not let that rule your life....
Tall orders eh?
But well worth it to re-discover a quality of life worth living...
I wish you peace....
Welcome to Healing Well. This forum has been a great source of information and emotional release for me. There is a vast amount of knowledge and experience with this disease from those on this board. Don't be afraid to ask any questions. The only stupid question is the one not asked.
I went through a flare last year and spent 8 weeks recovering from surgery. I was always having my four year old daughter come up and lay with me on the couch in the evenings after preschool to spend my time with her. Enjoy your good days and focus on feeling better during your bad days.
I have really relied on my faith to help me through some of my more difficult time. I read Tony Dunge's book "Quiet Strength" during my recovery last fall and found a scripture from the Bible that has become my motto with this disease. It is 1 Corinthians 4:8-9: "We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed." Another quote (and I don't remember where I got it) that helps me is "Inch by inch, life is a cinch. Yard by yard, life is hard." It helps me to remember to focus on the present instead of looking at the future.
I hope you find a medication that works for you.
I saw that you are from Michigan and was wondering what area. I am in Kalamazoo and have a wonderful doctor but I am also familiar with the Detroit area as well.
Hang in there! It does get easier with time to manage this disease.