New to This - How to keep from feeling defeated?

[new2crohnsinVA]

It all started last summer. My daughter was born and around the same time I started having intermittent GI issues. Then, it developed into a combination of sharp, stabbing pain and a general gas pain. After trying different things in my diet with basic meds, my doctor did an imaging study with a CT - large inflammation over my appendix and illeum. The radiologist wasn't sure if it was chronic appendicitis or Crohns.

I went to a GI who confirmed it, and in a rather unceremoniously manner, the nurse told me I had Crohns. I think that was the most disappointing part that she didnt' realize I hadn't been told yet - not to mention it was 2 days before Thanksgiving. Since then I have tried Entocort (wasn't enough), prednizone (not safe long term), and I just started Humira (second loading dose is tomorrow).

I find myself going back and forth between insomnia and fatigue. I'm falling asleep all day, then night hits and no matter how tired I am I can't fall asleep.

The hardest part is that I am having trouble keeping up with my kids (3 year old boy, 7 mo. old girl). I'm only 29 and feel like an old man, suddenly. Add on top of this all the horrific stories I keep reading about removing colons, long hospital stays, etc, etc.

Those of you going through this for years and years, how do you keep going?

 

[AndiGirl]

Welcome to the forum. You are still pretty new to the disease so I'm assuming that you are still going through some changes, adjustments, and coming to terms with having a chronic illness. It will take some time. I received my diagnosis six years ago, and I'm still learning to deal with the ups and downs that come with CD. Like you, I have two small children. My son is two and my daughter just turned one. When I flare-up, I feel so sick and weak. There are times that I need help with the little ones. I often feel like I'm not a good enough mother, or that I should be doing more. I also have to be realistic as the pain and symptoms can really wipe a person out. I am constantly reminding myself that, "This too shall pass. I've been through it before and came out okay." Being strong for your family isn't always easy. I sure hope that you have a good support system at home. Please check out the various threads in this forum. You will be surprised to discover that there are so many people around the world dealing with the same issues that you are. You are not alone and we are here to help you.

 

[CDDad]

Hi New to Crohns,
Hopfully your doc can get your symptoms under control, and you'll feel much better. I guess I'm one of those with the horrific story - but at least I'm Crohns free for now! My situation took over 20 years to develop, and not everyone gets that bad. Because of frustration, I went for many years with medication. That was a mistake as my inflamation festered.

So, work with your doc, get this under control, and you'll be enjoying life again.

 

[ameslouise]

Hi there and welcome!

Can we get your realy name???

It took me almost a year to get used to my Crohn's dx. For months I was convinced that the doctors had made a horrible mistake. I still find there are aspects that are more difficult to deal with than other aspects. For me, the unpredictability and fatigue are the worst. It's hard when you have little kids.

Don't be too scared by stories of surgeries, etc. Everyone is different, the disease affects us all differently and we react differently to all the different meds! Keep reading and you will learn that none of our cases are the same.

Hang in there. You have come to the right place for support and advice.

- Amy

 

[ameslouise]

PS I know what you mean about feeling defeated. That is exactly the words I have used to describe my feelings over the past year. It's hard not to feel like you have no control over your own body, that you are being betrayed by it. For me, that feeling went away when I decided to have surgery (which is next week). It was me taking charge and showing Crohn's who's the boss!

 

[new2crohnsinVA]

Thanks for the words of support. At home it gets tough because I think my wife loses patience with me when I'm not feeling well (I do too in fact) and can't help with the kids. I know it is a burden on her to have to take over for me, but I'm not always sure she believes me when I tell her I'd rather be chasing the kids around. I spent my daughter's first 3 or 4 months stuck on the couch unable to move.

 

[xJillx]

Hi and welcome! I don't have much advice for you as I am still in the same boat as you. I was only diagnosed last summer, and I still find it difficult accepting this disease, how it is affecting my life, and how it will affect my life. However, I have learned to try to stay as positive as possible; appreciate the good days and make the most of them. Also, I allow myself to rest when I am not feeling well; as Andi said, it will pass. Try not to drive yourself crazy thinking about all the "what if's". Be informed about CD, but try not to dwell everything. Sometimes it is easier said than done, but I think in time things will get easier. I wish you luck!

 

[new2crohnsinVA]

Thank you all for your words. I kind of didn't want to keep coming back to the forum as it made me think more about it than I wanted. I think I've come a long way - even my wife was surprised by my willingness to discuss it.

I've now been on Humira nearly 6 months and it seems to do the trick. I also find that exercising helps a lot. After spending most of the winter on steroids, I had put on a lot of weight that wasn't there before (which was both good and bad). I spent the Spring working out with friends and biking. The days I worked out I didn't have any symptoms and generally felt better. As work has piled on at the end of the summer, I haven't worked out as much and some of the more mild symptoms are bothering me 1-2 days a week.

The biggest change at home is since being on Humira, I'm really worried about getting sick (I had bronchitis and a bad sinus infection as a result of prednizone in Jan). I used to be the one who dealt with the sick kids, but now I feel like I can't be in the same room as a kid with a runny nose.