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Husband and 8-year old son diagnosed

Fri, September 26, 2014 2:11 PM

Hello-

I come to you as a wife and mother who needs some support. My husband was diagnosed with Crohn's disease in 2004. He's been on several treatments over the years and is currently on Cimzia (sp). It's not working very well, but his doctors are doing what they can.

Exactly one year ago today, my son was diagnosed with Crohn's Disease and required an emergency blood transfusion because his counts were so low (he was 7). He was doing well, taking his pills and growing. Then today I got a call saying his sed rate is back up to 55 and they need to see him to figure out next steps. This as my husband is trying a new steroid because he too has a high sed rate.

I guess my question to all of you is how do you deal with it? Do you have local support groups you can just cry too? Do you use special diets for your family? Are any of you gluten-free and does it work? I want to be strong for them and take care of them, but it's always one turn after another. Any advice you have would be great.

Thanks!
Jenel

jenelnels
Joined Sep 26, 2014

Sun, February 01, 2015 11:27 PM

Reply posted for davinator.

I eat like pasta,pizza with no cheese,I don't eat anything with milk in it,I have to watch what I eat,I know what your going through, I was diagnosed with colitis & it really hurt for a long time for me for 10 years till I had my colon removed,I have my good & bad days. God pulled me through all of it. I still struggle,but my doctor suggested I try remicade,I'm not on it yet I'm still deciding on whether to go ahead & do it. I'm sorry your going through this, I have a support team which is my family that pulls me through all I've been through. There is a special diet for this disease. If you eat any greasy foods squze the grease out it which helps me when I eat it,I can't eat any vegetables at all unless I eat a small portion. I hope this helps you & your family. God is good. Thanks, Josh combs

josh combs
Joined Feb 1, 2015

Fri, January 02, 2015 9:41 PM

Reply posted for jenelnels.

Sorry, just saw your question about going gluten free. I tried it for about 6 months but then was as sick as i'd ever been. I have read others that felt it helped them, so might not be a bad idea to try.   Same with probiotics; seemed to help with the gas at first, but then not so much.

davinator
Joined Jan 2, 2015

Fri, January 02, 2015 9:33 PM

Reply posted for jenelnels.

I'm a 44 year old diagnosed a couple of years ago but dealing with symptoms for about 7 years.  Unfortunately, the more you find out about crohns, the more frustrated you may get.  You'll see such a wide variety of symptoms and treatments its tough to keep them straight.  As for special diets, i can eat pretty much whatever i want but limiting seeds and leafy greens. I can't ever be starving or stuff myself as i will feel sick for quite awhile afterwards if i do. Many people have completely different situations though. As for support, i've never looked into any local groups; i've never believed in misery loves company.  I pretty much just suffer in silence and try not to be a bother to my wife and kids. <br /> <br /> This probably hasnt helped much, but feel free to reach out and i'll try and help in anyway i can. 

davinator
Joined Jan 2, 2015

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