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I am so happy to have found this forum.  My 10 year old son was just diagnosed (last month) and we've just started Pentasa, Prylosec, and Flagyl.  This week we went for our first appointment since the colonoscopy and I feel totally overwhelmed.  I took a page of questions with me and all of them were answered (and then some) yet I thought of more questions than I asked at the appointment in just the time it took us to drive home!

Our ped. GI said he felt Matt had a mild case of Crohn's while we were at the hospital having the colonscopy.  But at our follow up appointment the next week he said there is inflamation in his esophagus, stomach, small and large intestines, rectum and anus.  From what I've read it is less usual to have inflamation in all areas of the digestive tract.  My question is do they rate Crohn's as mild, moderate or severe based on the number of places inflamation is, by the severity of the inflamation, by the severity of the symptoms, all of the above, or something else entirely? 

Anyway.  I am so happy to have found some other people with kids with Crohn's to talk to. Thanks!

 Reply posted for mominmichigan.

Posted: Sep 24, 2009 11:00 AM EST

Anyone with these similar symptoms for Ulcerative Colitis?Two good books. "The Crohns Disease and Ulcerative Colitis Fact Book" ISBN 0-684-17967-9, put out by the Crohns & Colitis Foundation of America, Inc. "Crohns Disease and Ulcerative Colitis-Everything You Need To Know", ISBN 1-55297-771-4.                                             Joe

 Reply posted for mominmichigan.

Hello,

I too am glad to have found this forum....my daughter was diagnosed in January 2009, she is 17 years old and we live in Michigan.  Alot of trial and error at this point but she has a great doctor who is always available and eager to answer any questions. 

I feel sad for my daughter that she has to go through life with this disease (I am a nurse and I know how bad it can get) but she is really taking it with a positive attitude.  She is a Christian and believes that God will not give her more than she can handle and there is a reason for everything. 

We haven't told her 19 year old brother yet, per her request.  He moved out for college so there has been no need for the crohn's discussions when he is around.  I realize she needed time to adjust to this situation and as soon as he is home we will be telling him.  This affects his life too and he needs to know what to look out for in the event that he may develop this disease also. 

Thank you all for your posts....it's great to read your stories.

 Reply posted for mominmichigan.

Hi.  It sounds like you are finding support, which is great.   CCFA-Michigan has some great people.  I think our kids might have the same doctor.  He also mentioned Camp Oasis to us and he volunteers at the Michigan Camp every year.  Good luck.  I hope your son is feeling better. Take care.

 Reply posted for mominmichigan.

Thank you all so much for your replies!  It helps so much hearing that others are going through this and doing ok.  I feel better about it all already. 

The doctor we are using is also out of a hospital in Royal Oak.  I liked him a lot... he told us about Camp Oasis and it does sound like a great thing for a child to experience.  Also a really nice women contacted us from the CCFA (I had emailed looking for support groups).  She was so open in sharing her experiences and I hope to attend some CCFA events too. 

Again, just knowing that there are some other moms out there I can shout out to is awesome.... so far the people in my life that we've told haven't known much about it.  Thank you for taking the time to reply. 

 Reply posted for mominmichigan.

Hang in there.  You are doing all the right things: asking questions, getting answers, and looking for more information.  I am Mom to a son, who just turned 15 y.o. He was dx'ed last August with Crohn's.  He spent last summer miserable with a fissure to fistula that led to surgery in December.

He is on Asacol and vitamins.  He feels better and just wants to grow.  He is 90 lbs and 5'3".  He will start high school next month.   This summer we were surprised by his GI Dr. telling us he is baffled that my son's inflammation levels are almost identical to last summer (when he had so many problems). We are getting in touch with the university hospital to have further consultation.  We are hoping to get him into remission soon enough to maximize his growth.

We too live in Michigan!  I am also a Mom to a 28 y. o. son with U.C.  (he is a half brother to my son with Crohn's)  I am also Crohn's  patient (dx'ed in 1996, after 20 years of undiagnosed problems).  

I have found this community forum extremely helpful. 

 Reply posted for mominmichigan.

Hi!

My son was diagnosed with severe Ulcerative Colitis in February of this year.  I believe he was diagnosed "severe" due to the disease affecting his entire colon.  Poor kid didn't have any sections of his large colon that weren't affected.

I too am from Michigan.  My son is 14.  If you or the other mom that posted from Michigan would ever like to chat, e-mail me at dana2354@comcast.net.

Stay strong!

 Reply posted for loving mother.

Hi! It seems like yesterday that my daughter was diagnosed (Oct 07) She is almost 17 now and also has Crohns throughout her GI system from her mouth to her anus - I think the only part not affected is her stomach. She is categorized as moderate to severe with extensive areas.  I had a million questions in the beginning- and writing them down really helped me remember what to ask at appts.. My daughters doctor is phenomenal  and is very caring- answers all questions and treats my daughter very well. It is a woman doc and find that is perfect with a teen girl. My suggestion is to keep a planner with large sections for writing appts and notes.  I had never kept a calendar before she was diagnosed but couldt live without one now.  The thing that helped me the most and still does is talking to other parents who have children with UC or Crohns
. My daughter is doing very well now on remicade. She has participated in Take Steps since she was diagnosed.  She loves being part of helping to raise money to find a cure and she finds comfort in meeting other people with the disease. I agree with the other post too that camp oasis would be great for your son.  There is nothing better for kids with these diseases than to not feel alone or different.  Kids talk to each other in ways we cant.   This may seem too much for you right now- but things will improve. Sometimes medications need switched and tests need to be run - its ok- and ask your questions and do whatever you feel you need to as a mom! I questioned everything,called drug companies, was on the phone with parents of Crohns kids, did research-- thats me- thats my personality but I needed to do that- i did- and her doc completely understood. We are very blessed. I still always have questions but I am much calmer now. this site helps me

 Reply posted for mominmichigan.

Hello there.  My son is 8 and was diagnosed with Crohns in October of 2008 at the age of 7.  He too has Crohns throughout his GI system from the stomach to the rectum.  We were also told its mild to moderate but "extensive".  He is on pentasa, prevacid, Imuran, iron, vitamin D, and back on Miralax.  I am also in Michigan!!  My son has a great GI doctor who always follows up and answers our questions.  I am not sure if I can give the name of the hospital or not.  But the hospital is in Royal Oak (hint hint).  I have been in contact with the CCFA Michigan chapter and they are very supportive.  My husband and I formed a team and participated in the Take Steps walk on the Detroit River this year.  I am hoping to send my son to Camp Oasis in our area too in the coming years.  I always write my questions down in a notebook and keep a calendar of symptoms and such and take it with me to my son's appointment and discuss everything with the doctor at the end of the appointment.  Take care, I will keeep your son in my thoughts and prayers.  God Bless.