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Son newly diagnosed with Crohn’s

Sat, April 14, 2018 1:23 PM

First I’m sorry if I ramble. I am so scared, overwhelmed, and angry! My 13 year old son Andy was diagnosed with Crohn’s. I don’t understand how this could happen!!
Andy never complained of pain! The only issue was constipation! I would talk to the Dr’s over and over again. Have him eat yogurt, have him take Miralax, not everybody goes everyday. I heard it all! A couple months ago Andy started waking up in the middle of the night with loose stools. I asked his Dr. She said he’s probably under stress told me to see a physcraphist(?)!! Instead I got Andy in with a GI dr. First she was wore about his height and weight. He’s 13, 4’9 and 70 pounds. Forever we were told not to worry because his dad and I are not big. Then she got blood tests. His iron was low and an unidentifiable inflammation. He did the sweat test for cystic fibrosis. That was negative. Then he did a upper endoscopic and colonoscopy. Two days ago he did the MR3. You hear the stories, the pain, the heartbreak. How do we handle this? Could this be a mistake? He is on 40mg prednisone now. Why so many horror stories about that? Next they want him to either get infusions or shots! What is better? This is my baby! I want to stay strong and positive. Is there any positive? Thank you to whoever took the time to read this. Any, any advice or anything is very much appreciated!

FPO Abrown806
Joined Apr 23, 2018

Thu, July 05, 2018 7:17 AM

Reply posted for Sara.

Hang in there. My son was diagnosed with Severe Ulcerative Colitis when he was the same age. I cried every day for a month. My adivice to you is research, research, research! I also joined the Crohns and Colitis Foundation on Facebook. That helped me the most. I had someone to talk to, ask advice, and vent. Find a good pediatric GI. It took me almost a year to find one we loved, but we found one. Also, it took a year to find the right medication. After a year of Humira Injections (they are very, very paingful), my son had built anibodies to it and he could not take it anymore. His GI doctor started him on Remicade Infusions every eight weeks and he has been in Remission since August of 2017. We go to the hospital, he get's an IV of Remicade and it takes about three hours. He feels great. I am also happy to announce that he almost weighs 90 pounds and is almost five feet tall. He runs and water skiis competitively so that also keeps him thin. My point though is that he is well and active. My prayers are with you. Good luck, try to stay positive, and do a lot of research. Knowledge about Infalmatory Bowel Disease will really help you. 

FPO beckdavich
Joined Jul 5, 2018

Fri, May 25, 2018 8:58 PM

Reply posted for Abrown806.

Sorry to hear about all the sweet young children diagnosed. I am in process of getting dx, esr crazy high, fecal calprotein insanely high. Ileocecal valve is very very bad shape but I haven't been feeling too bad. I tired to eliminate lots of processed food and seems to help. I am soo worried. My teenage son is describing similar symptoms. My mother had crohns and then colon cancer, my grandfather same story, great grandfather well he was in Aushwitz but we were told him had gi problems too. I am terrified I passed on bad genes to my son. But we have to do what we have to do. Gd give us the strength

FPO Sara
Joined May 19, 2018

Mon, May 14, 2018 12:13 PM

Reply posted for Abrown806.

I'm sorry to hear about your son's diagnosis. I understand how hard this news is for a parent, My 15-year-old son was diagnosed with Crohn's in February. He appears to be handling it well, but my husband and I have had so many emotions, sadness, worry, and anger... he's already had three eye surgeries so it's seems so unfair that he has another condition to cope with.

The good news is that he appears to be doing well. He gained 30 lbs on steroids (his starting weight was 84 lbs) and feels very well. He has been on Humira injections for nearly 2 months. This is his final week on steroids, so I guess we will start to learn if the Humira is effective in controlling the Crohn's on its own. He has been very brave with the injections and has been able to administer them by himself (although I've done some as well). 

The sad thing is that I will always worry... will he develop side effects, will the humira stop working, will he get sick from an infection? But I keep telling myself to take it one day at a time. I do want to learn more about nutrition to support his health, but the GI doc has not been helpful in that area.

Best wishes to you and your son as you figure out what is best for him going forward. You are not alone!

Joined Feb 18, 2018

Mon, April 23, 2018 3:19 PM

Reply posted for Graciesmom.

Im very sorry to hear about your daughter. I really wish I had something positive or some kind of wisdom to share. I don’t. I am still angry and crying everyday. My son is doing good right now. Wednesday he gets his first infusion of Remicade with Benadryl and steroids. He knows he has Crohn’s, knows incurable, knows about the treatments. He just wants to feel good. Even though he didn’t think he felt bad but is actually excited to feel good. Probably doesn’t make sense. We tell jokes about Crohn’s. Let’s say we got pulled over for speeding, “I’ve got Crohn’s, gotta go!” Can’t join the military. Silly things. I try to stay strong in front of him. We talk a lot about summer. Sleeping late! He’s been having a rough time sleeping because of the steroids. We just try to talk positive in front of him. 
Good luck yo your daughter and your family. Keep me posted on how she is.

FPO Abrown806
Joined Apr 23, 2018

Tue, April 17, 2018 1:53 PM

Reply posted for Abrown806.

My 10 year old daughter was just diagnosed with Crohn's  last week and we are feeling very overwhelmed, too. She has been having a hard time processing and making sense of what is happening. She is currently taking Prednisone while we explore dietary treatments or Remicade infusions. This is all so new and I feel so alone. I am exploring support groups in our area for her. Please keep me updated on your son's treatment.

FPO Graciesmom
Joined Apr 17, 2018

Mon, April 16, 2018 4:49 PM

Reply posted for Abrown806.

You just read a page from my book as well.  My son was diagnosed in January, at 15 years old.  No pain ever - but years of constipation, and then the bloody loose stool started over the summer.  His blood levels were apparently extremely low - enough for the doctor to order a colonoscopy immediately.  And that is when we learned he had crohns.

For a freshman in high school, I can't imaging anything worse.  We are lucky that the medicine he is on (Meslamine and Uceris) seems to have it pretty much in check, with the exception of a recent calprotectin test that came back very high.  The school has been very supportive, as have his friends.  We are learning as we go and amazed at the number of teens affected with this disease.

FPO zachsmom2002
Joined Jun 11, 2018

Sun, April 15, 2018 11:07 AM

Reply posted for Abrown806.

Sorry for your son.  It’s a terrible disease, and if affects everyone differently.  Same with the treatments.  I had ulcerative colitis, and now have Crohn’s.  Prednisone was the only Med that worked, but the side effects are horrific if taken long term.  It gave me cataracts, osteoporosis weight gain.  Read up on it. On the bright side, I think they are making real progress with biologics like Remicade and entyvio, although they don’t seem to work for me.  Some people have success altering diet, sometimes it just goes into remission.  Crohn’s is a nasty disease, but it doesn’t have to ruin his life. Your son can still lead a fairly normal life.  There are a few tricks to managing it.  Good luck.  This website can be very helpful.

FPO charbs
Joined Oct 31, 2016

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