Kathy,

You are not alone. I believe that at least at one time or another all IBDers go through something similar to what you describe. When my first big-time flare hit, it hit with a vengeance and I was pretty much in that flare for more than a year. I was a journalist at the time running to cover stories and my boss and I had to agree that I couldn't do it anymore in the physical state I was in. Thankfully, my husband was 1. employed; 2. helpful and understanding, and 3. extremely patient with me and my situation.

I tried everything and finally found a combo of things that really help me whether in a flare or not - I wrote a book about it all called Living with IBD & IBS: A Personal Story of Success. When in a flare I figured out I could only eat very basic things like rice, yogurt, baked chicken or white fish, scrambled eggs, toast, bananas, and weak Gatorade to help keep my electrolytes up. I also had to learn to listen to my body, and when it told me it needed I rest, I had to rest. Out of a flare, I still eat a restricted diet, which I figured out by doing an elimination diet and keeping a food journal, both helped me to identify foods that aggravated my gut (you can see my blogs on this site about doing both). I also learned about meditation, rhythmic breathing, yoga, and stress reduction techniques which are helpful for maintaining a sense of psychological calm.

Turn to an IBD support group if you can - go to the Crohn's and Colitis website and it should give you a list of support groups. It can be very helpful, in addition to sites like this, to actually BE with other people who GET what you are going through. I love my husband very much, and he has been more than patient and helpful and understanding in the past 11 years I've been dealing with all of this, but when it gets down to it he still can't REALLY understand what it's like to be in my body, to have to live with limitations, and to not ever really know when your gut is going to go off the deep end.

Other IBDers get all of this, and a good number of us have learned how to live a decent life despite it, even though we've gone through periods of terrible flares, having to put life on hold, and in some instances being hospitalized to get a grip on it.

You're not alone, keep letting us know how you're doing.

Cheers,

Elizabeth

kathyrose

6/13/08 2:58pm

 

 Hello ,

  Thank you for yor words, they do help. I am doing the things you had mentioned Elizabeth. I use whatever tools I can when I am feeling like this. The reason I am so scared and  I am sure at one point or another everyone is. I have never been in remission. I have lived with this most of my life. I am just hitting a wall right now, this often happenes and I have to pick myself up dust my self off and begin again. But you know what that is getting really old and very hard to do as the years pass by. Don,t get me wrong I have hope and faith that I will be okay because I have to be. I am starting on a new med today, CIMIZA the drug that was FDA approved in April 2008 so it is a brand new one. I have high hopes for this, I am hoping it will do for me what the remicade did when I first started to use in 6 years ago.

  I have been out of work for alomost 4 years and I need to get back I am afaird I will fail and that is not an option. I support myself and disablity does not pay enough for you to live on. I also don,t want to go on to disablity because I feel like the crohns won and that is not going to happen. It is hard to go this alone

I don,t have support from my family which is a very big dissappointment,but there is not much I can do about that. I have gone to support groups just have not found one I like. But I will continue to seek out the support I need.

I have other chronic illness that make life hard,I have lupus and fibromyalgia.

Another 2 wonderful illnesses, I almost died over the past summer,I was in the hospital off and on in june and than back in for a long ride most of july and august. I was in ICU for 14 days, and had surgery 10 days in row,it was clock work every morning at 6:45-7:00 am they would come and get me and do the procedure and bring me back to ICU where I lay in unbelieveable pain for it just to happen again in 23 hrs. When I left ICU and went to the floor I stayed there for along time. So when I came home I came home alone to take care of myself.

That was hard, so I know things will get better they have to but until they do get better I have these times where I feel very mad and sad.  If anyone is taking CIMZIA I would like to know how you are doing.

Thanks

Kathy

Rachel

2/18/10 3:29pm

Listen, I hope you get to feeling better.  I have not wanted to respond to anyone again, because I'm trying to keep my hopes up and not wanting people to know that it is really bad for me now too!!  But I'm very strong and trying to survive as best I can.  Welcoming the small things in life.  I'm not taking Cimiza, but they want to put me on Endicort along with Pentasa.  My doctor says that Endicort can cause renal failure.  I'm on Pentasa right now, but don't think it is helping much.  What is help supposed to feel like.  I want you to tell readers to be very careful of Endicort, because you don't want the medicine to kill you instead of the disease.  

 

Stay well and hope you get better soon!!  Until I email you again stay very well. 

 

Love

Rachel