This is new for me

Hi! I'm Dulce and I'm a new member. My 13-year old son was diagnosed last wendsday with Crohn's disease. It all begin on September the 13th. Before that there were no sintoms. He is a really strong and big boy (1,68 high and 74 Kg before surgery). He had never had any diarrhoea or lost his appetite. That day he started with a pain on is belly that got strongly throught out the day. We rushed to hospital with what everyone thought to be an appendicitis. They've removed his appendix and a part of his colon. He had mass 15x8cm, that the doctors thought was a tumor. The first suspicion was cancer. After the biopsy they assured us it is Crohn's disease. I've already looked it up and pretty much understand what it is, but I'm full of doubts how to deel with it and what effects is going to have in my son's life. (I'm sorry for the mistakes) Thank you for helping.

Welcome -- my story started out just the same. NO idea until huge pain, removed appendix, surgeon photographed Crohn's (very lovely photos, I assure you). I have the kind that comes as strictures narrowing my small intestine in several places in an 18 inch piece of the small intestine. Since then, I had an 8 week flare-up and then a 2 week flare-up. Traditional meds were not solving the problem. I went alternative and found the solution (for me). Now, I have no symptoms but am mindful what I eat and how I chew it. It is a VERY scary illness because of the immune system component. One worries how long it will take for the body to attack yet another area (once one is removed) or close down the area the body is already attacking. My thought, when I was diagnosed at 36 years of age was that I have a LOOONNNG time to deal with this and that is what upset me the most. How could I manage for so many years? But, between some very good traditional and alternative meds, we each find our way and do the best to lead good lives. Your son will have to learn how to manage at school or other young-people functions. Some of the people on this board have had the illness since school-age. They can give advice too. Hang in there and tell your son that there is a whole community pulling for quick recovery and healthful management.

Aloha dulce, and welcome to the forum. The thread about your son was the first I clicked on this morning (at BC) and I was so pleased to see that you had come here. It's a confusing and tension-filled time right now, for you and for him. I think being here will help. There are several people here who were diagnosed when they were quite young, so they can share some of their experiences directly with your son if you think that will help. And there are also a number of supporters, too. They don't have bowel problems themselves but are here for help and support of a loved one, just like you. As you wander around the forum you'll find information on different treatments and medications, diet and lifestyle. Having Crohns is going to have a huge impact on his life and yours, but having good information and support will help you both. I think you're both probably a little scared and confused right now. What you'll find here are people who are living full and happy lives with Crohns. They'll share that with you and help him adjust to what Crohns means in his life.

I'm glad you're here! :welcome:

Hi Dulce, welcome. I too am new here but am feeling settled in already. It sounds as though your son has had a tough time, however if they have already done a bowel resection, things should be rather positive for him. Any pain or discomfort he may have had prior to the op in theory should have gone. Naturally he needs to recover from the op but after that I would have thought you will see positive results. The medication for Crohn's sounds rather gruesome with some of the side effects but I have been on Pentasa, mebeverine, aziathioprine amongst others for ages and they defo work for me. Hope all works out for him. Keep us posted.

Welcome Dulce.

It is hard for anyone to go through this disease, and we also know it is hard for the people around us. Your son is experiencing something new and challenging, and it will likely be hard at times for both of you (and the rest of the family), especially early on. But this can be reduced by informing yourself and your son about the disease as best as possible. Knowing common symptoms, trigger foods and the vast amount of information stored at this site (in addition to other places) will make this much easier for both of you. Flairs can be bad, but in truth they are often short-term problems (as in the pain and other symptoms last for only a few hours at most). If they go on for longer than that (as in half a day or longer) then you know it is likely time to go to the Emergency Room. Knowing something like this can make the first few flairs your son may go through easier to handle, as you know not to panic and try to go to the hospital right away.

In truth, your son may go years and years with no ill effects of the disease present in life. It may not even affect what he can eat. This disease is different for each and every single person, so really the best information you can learn is from self-experience with your own personal situation. I think it is important that your son takes an active role in the management of his disease. While it may be hard to, it is important not to take control of managing his condition away from him (as a mother's instinct might push her to do). He should be responsible for ensuring he is taking medications, avoiding his trigger foods, get enough sleep and avoiding stress when possible. A watchful eye and some reminders are expected, but giving your son as much control as possible over his disease is likely hard for you to do, but it will be for the best. It can teach your son responsibility and make him take better care of himself. It can also give him confidence and make him feel more in control, especially if he learns about his condition. Being aware of your disease (even if you cannot control it) gives you a sense of power though, as you know what is going on. You are able to tell people about the disease you have, and do not have to be embarassed about it.

Feel free to have your son join here also. You both are welcome to post whatever you want, and to get support on anything you require. Post any questions you may have, as we are the experts. There are no stupid questions either.... I can honestly say that I was totally unaware of this disease until it affected my family directly. I am sure this is the same for a lot of people, so do not feel ashamed to ask ANYTHING!

Like Mike said, "Your son can join here as well." Ask what ever you want to ask and we will try our best to answer everything. Welcome to the forum.

Thank you all. You've been very supportive. I'm learning a lot.

My son is not as concerned as I am. Maybe because he hasn't started his medication yet (we have today the first gastroenterology appointment). The diagnos was told by the surgeon. I don't want to be over protective but it's not easy to "let go" of the control. He can't come to the forum himself because is english is very poor. Anyhow, lets see, after today's appointment what he feels and what he wants to do. :Flower:

Dulce, I was in exactly your position 3 years ago. I have two sons with Crohn's. And, believe me, the biggest problem you will face is getting your DS to grasp the implications and seriousness of the condition. My boys are 19 & 21 and they still skip their meds and think they can blow off the symptoms. They scare me to death.

Anyway, my oldest DS has always been a big boy. Before he became ill, he was 6'4" and about 230lbs. Within 6 months, he was down to 184. He looked skeletal. You would count every bone. However, with treatment he is back to a more normal weight and has been maintaining well. I could have smacked him recently when he suggested going off his meds to lose a little weight. I told him malnutrition is a heck of a weight loss plan and if he tried it I was going to haul him bodily up to his Doctors office for a stern lecture.

Hi Dulce, and welcome. The one blessing I feel is that I have the disease, not my sons. As a parent, I can't imagine what you are going thru... Except for a frequent
nightmare I have that my youngest may be displaying the early warning signs too.
He is only 18.. BUT, take heart. I think one of the most important things that both of you may take from this site is the knowledge that it isn't a life ending type of illness, more a life altering one.. and that no matter where in the world you are, you nor your son is alone. you'll always find friends here at the forum, okay? Also, don't apologize for your English.. It is far superior to my Portugese... altho I have a younger sister who speaks some... She learned it as a child back home... Anyway, again welcome.. Ask us anything you like, and I'm sure we'll respond...

We went to the first gastroenterology appointment. The doctor said that my son is quit good. Next week is is going to do a colonoscopie and an endoscopie (I don't know if this are the correct designations in English). She also said that if she couldn't find any more problems she wouldn't give him any madication for the time being. Thank God he is much better.

hi Dulce, and welcome, I hope your son continues to get better, fingers crossed for him