What to expect

[WorriedMomAmy]

Hi,
We just had my son's colonoscopy and upper endoscopy today after months of abdominal pain, diarrhea and substantial weight loss. His doctor told us today that he feels like my son has Crohn's Disease. We are waiting on the biopsy results which should be in next week. I have been reading on websites trying to educate myself so that I can try and answer any questions he may have. He is 14, very active in basketball, football, track and baseball. I am just hoping this disease doesn't affect his ability to play all the sports he loves or prohibit to achieve all the goals he has in life. I feel so lost today, worried, scared, unsure... as a mom I just want to fix it and I can't. Any advice?

Thanks!
WorriedMom

 

[KWalker]

Welcome to the forum! It's good that you got him in to see a specialist. Like I said in another post I don't personally find crohn's to be extremely limiting. There are exceptions and some people do get it much worse than others, but I was diagnosed at 2 with it so I grew up with it, I got sponsored for skateboarding, loved bike riding, and all the other fun things most boys like to do when growing up. It's all about finding the proper medication that works for him, and unfortunately it could take a few different ones to find the best one for him.

Best of luck to you guys, and you could even have him join as well. There is a second specifically for teens on here that nobody else is allowed in. Who knows what goes on in there! lol. But seriously, it could give him a chance to talk with other teens dealing with the same thing.

 

[DustyKat]

Hi WorriedMom and :welcome:

I'm glad you have found your way here but I am very sorry to hear about your boy. :hug:

You are doing the right thing by reading up on everything you can, knowledge is power and that in turn will make you the best darn advocate for your son that you can possibly be! The other thing is to ask questions, ask us and we will help all we can but also ask and question the doctors.

Many doctors will tell you that diet plays no part in Crohn's. While I don't believe that diet causes Crohn's I do believe that it can have a role in treatment, symptom relief and maintaining remission. Have a look through the Enteral Nutrition Forum and the Diet Forum.

As with many diseases, Crohn's is also highly individual and varies in severity. What treatment works for one won't necessarily work for another but I think the main thing is to keep an open and honest mind and be prepared to change if that is what is called for. There are also some lesser known treatments like Low Dose Naltrexone that you might like to have a read up on and keep in store should it ever be a viable option.

We also have a Parent's Forum so pop by and have look around cause we would love to see you there!

Both of my teenage children have Crohn's and once they gained remission they have been living life to the full and more! He will be able to play his sports Mum and he will fulfil his future dreams and goals. Sometimes there is a detour along the way but he will get there!

Good luck and let us know how you get on.

Dusty. xxx

 

[Johnnysmom]

It was only 5 months ago I was in the same position you were. My head was still spinning and we had a lot of decisions to make quickly.

There are two types of drugs that people with crohn's take, drugs that quickly get symptoms under control and drugs that maintain remission. The maintenance drugs usually take 3-4 months to start working so they wanted to put my son on Prednisone to get things under control until the maintenance drugs could work. Most people use Prednisone (steroid) or EN (which is basically an all liquid diet) to induce remission. Each has it's advantages and disadvantages.

The maintenance drugs have basically three different options: 5 Asa's (anti-inflammatories), immune suppressants (6mp and Imuran), and biologics (Remicaide, Humira, and several others). What your Dr. recommends will have to do with his personal approach or the severity of your son's disease. Some Dr.'s take the top down approach and want to start with the stronger drugs first. Sometimes I think they start with the stronger drugs because of the severity of what they are seeing during colonoscopy. It is a bit of a guessing game with this disease because it can silently be doing a lot of damage and things can change quickly too.

I would take this time to read as much as you can about these different meds, because your probably going to have to make some decisions very soon about what path you will take.

My son was diagnosed in Oct. 2011 and we found out one week ago that he is officially in remission. He feels even better than he did before diagnosis and it experiencing no side effects from his current medications. It has been a process getting here and we have had some difficult times but he is healthy again and enjoying all the things he did before. ( And even feels better now) He has gained 24 lbs since diagnosis and has started growing again.

Also, know that there are literally dozens of new drugs in the works and the research that is happening right now should give us all hope that our kids will live very normal lives. I am sorry you all have to deal with this but once it sinks in and you get further into the process it will get easier.

Please let me know if you have any questions about my son's specific treatment plan. I would be happy to share. The great thing about this forum is that you will get to read about many different approaches and find one that will fit best for you.

I hope I didn't make this more confusing for you, it is a lot to take in!

((hugs))
Tiffany

 

[QueenGothel]

It is a bit of a guessing game with this disease because it can silently be doing a lot of damage and things can change quickly too.

Tiffany you did a great job... I just want to put importance on this statement you made. I wish I would have did the top down approach and listened to the doctors. It is hard to not be in denial about this disease. Predisone is evil. It really is... you think your doing great and then a flare begins and it just gets worse and worse in my experience.

Join the ccfa as soon as you can... Very helpful group of people.

:rosette2:

 

[WorriedMomAmy]

Wow, thank you all so much. All the information is so overwhelming but so very helpful. He has lost almost 30 lbs but hopefully once we get the inflammation under control he can start gaining weight again. The doctor mentioned a medication that would take 3-6 months to start working, so he would put him on prednizone for a short time to help. He has been on prednizone before for his asthma and luckily we never had any adverse reactions to it. I can't remember what the name of the other medication that takes so long to work was (the day is just a little blurry) but he said it would slightly suppress his immune system. We definitely plan to alter his diet a bit especially right now with the inflammation being so bad. The doctor did put him on Flagyl which is making him feel bad today. We are impatiently waiting for our next appointment, that will be when we get the biopsy results back and figure out a course of treatment. I think for me this waiting is the scariest part, just because we don't have a plan. I am trying to write down all my questions and concerns and I know he is too. I will keep you all posted and really appreciate the support I feel from this group already!

 

[Angrybird]

Hi there, with regards to diet it may be worth looking at enteral nutrition as mentioned above? It may be tough initially but many have had a really good result with this and it can really help with giving the bowel a chance to calm down.

xxx

NB Welcome to the forum! I hope your soon can fell better soon :hug:

 

[DustyKat]

The medication they are talking about would be Imuran (Azathioprine) or 6MP. Starting with Prednisone and Flagyl is the usual course of treatment. I assume he has had a TPMT blood test and once that is returned, and is positive, they will commence the immunosuppressive.

Good luck!

Dusty. xxx