Chrone's Disease--my Friend Needs Moral Support

Hi,

I'm so sorry to hear about your friends daughter. I know several people that I can put you in contact with that have Chrone's, but no longer suffer with the symtems and are no longer on medication. Call me and we will contect you with these people to hear their stories. It is simply amazing what your body can do when you give it the nutrition it needs. Not just the minimal daily requirements, but optimal balanced.
Our numbers are:
Home: 1-###-###-####
Cell: 1-###-###-####
e-mail: ____@____.com

My husband has ulcerative colitis (UC) which is simlar to Chrones but thankfully not as bad as it only effects the lower intestine but otherwise are very similar diseases. I can't lie, they are horrible diseases to have, especially as a young person. The good news is that there are new forms of treatment being approved everyday (especially for Chrones) and there are a ton of support groups out there...live and on-line for your friend's daughter and for your friend. Especially since your friend's daughter is a teen, I'd suggest getting into a group or some theropy. I know that just dealing with my husband who was diagnosed at 25 has been hard enough, I can't imagine being a teenager and a female. For the most part, my husband tries his best to live as normal of a life as he can. There is no cure for either of these diseases short of removing the entire digestive system but with knowledge, diet, etc. she can stablilize with minimal flare-ups.

My biggest recommendation is that if there are any doctors talking about surgery, a second opinion is the best idea...no matter how good the doctor is.

I am by far a doctor but I really think the surgery needs to be done. My mother almost died from Chrons. Her intestines were clogged and it caused a horrible infection. They did the surgery to clean it all out and since the surgery she has gained weight all over. Her stomach is always so bloated that she looks pregnant. I'm not sure if the weight gain and bloating are normal so you might tell your friend to ask so she isn't surprised like my mother was. Other than that she has done really well. With regular visits to the Chrons specialist her symptoms are all very minimal compared to what they were. Good luck and I'll be praying for you both.

I myself have dealt with Crohn's disease for the last 25 years. I had major surgery that removed all of my large intestine when I was 25 years old. I would be happy to offer your friend any advice and prayers.

K. at ____@____.com

Poor thing! I wish I had some more advice to give; something neat to say. Hopefully you can show her that you're there for her and most of all, be the shoulder she can cry on.

We're getting ready to undergo even more testing for our 7 month old as they think she has Hirschsprung's (the cells that make bowel movements happen aren't in the rectum, therefore causing infrequent and very painful bm's- only a series of surgeries fixes this).

As a Mommy, you never want to see your child be in pain, let alone have to go through surgery. But, if at the end of the day, it helps her, then that's what needs to be done.

Again, just be there for her. Clean her house. Help take care of the pets. Whatever you can do!

I don't know how much this will help. But, my DH's uncle has Chrones disease. He has had several surgeries, some of his intestines removed, etc. They also put him on some supplements that seemed to help a lot. They do more organic and natural foods from the health food store. That seems to help him since they switched over. He is into his mid 40s now, and doing well. He has always worked full time and live pretty normally, unless it was right after surgery. So, I wanted to reassure you that she can live a long and fulfilling life.

Hi A.,
That would be so scary. We have friends whose teenage daughter went through a similar situation and surgery. She is doing great now and is in her 20's, about to graduate from college. We will be praying for your friend's daughter--and your friend!
A.

Angie,

I haven't had personal experience with Crohn's but it it a rough disease to deal with. I did want to share with you a little bit about a girl I went to school with who had it.
She was a teenager when she began really suffering with it and ended up with extensive surgery. Prior to the surgery, the poor girl was losing weight and was SO sick. After the surgery, and after finding the right medication, she was thriving. I actually saw her a few years back at a Thanksgiving football game (over 10 years after we all graduated high school)and she looked great! She was married with healthy children. We weren't really friends, so I don't know details, but she did very well.
I used to work in rheumatology, and a lot of the medicines we used were the same or similar as to what can be used in Crohns. Luckily, there are new, very effective treatments that can really help. In addition, Johns Hopkins is the place to go! It really is a spectacular hospital.
Please share my best wishes and prayers with your friend.

TELL YOUR FRIEND TO STOP ALL PLANS FOR SURGERIES & READ "THE MAKER'S DIET" BY JORDAN RUBIN!!!
He went from 180+/- lbs down to 104 b/c of Crohn's... now he's cured of it. He is a practicing doctor too that you can actually go see.
PLEASE, before that poor girl goes through that, have her look into this ASAP!

I have a friend who has Crohn's and I think the worst part was not knowing what was wrong. Once they figured it out, after the initial struggles, she's doing fine with it. She's married now and has a little boy the same age as our daughter. Tell your friend to hang in there!

My sister started having issues at 16. She was not officially diagnosed until after they removed some of her colon at 20. I would be happy to talk to her about my sister, and I am sure my sister would be happy to talk to her since she is the one that actually went through it. My e-mail is ____@____.com.

My best friend has Crohn's. She's had it for about 20 years. The first 5-7 years were really rough, with surgeries and learning how to adjust medically and financially. She ended up finding a position as a medical writer that she could do mostly from home so that she could accomodate days when she could not be away from a potty. She can't eat a lot, but she's very aware of her limitations, and once she adjusted herself she could live almost without getting sick at all. There are also Crohn's support groups that can help with these adjustments. Since your friend's daughter is a teen, the local children's hospital should be able to point her to an age-appropriate one. Wish her luck from me and my friend.