New to group

[hearts2mend]

Hi all...I am new to this group trying to learn as much as I can for my 17 year old son. He has just "officially" been diagnosed with CD via biopsy this week. He doesn't have a lot of symptoms and was thought to have CD when, in January of this year, he had appendicitis. The surgeon just knew by the look of his small bowel it was CD so he was fortunate in that sense to not have to suffer for years like many do until getting a diagnosis. He has had one admission after his appendectomy but they couldn't rule out infection so it wasn't a clear case at the time. GI plans on getting an MRI enterography ASAP because his second colonoscopy, less than a year from the last, looks a lot worse.

I guess my question/concern is what will they do if the MRI shows it is more severe then they realize...is this where more meds are added or surgery discussed, etc? He is currently on Asacol 1200 twice a day (didn't tolerate the other once daily mesalamine).

I work in the healthcare field and this isn't my area of expertise so any advice, words of wisdom or encouragement is greatly appreciated.

Thanks so much!

 

[DustyKat]

Hi hearts2mend and :welcome:

I'm so sorry to hear about your boy. But glad you have found your way here as there is loads of info, experience and friendly people hanging out here.

The results of the colonscopy and MRI will be what determines where you go from here. Since his results thus far are worse than 12 months ago then I feel fairly confident that the first move they will make will be to ramp up his medications. How far they go with that will depend on what sort treatment regime your GI subscribes to. Asacol is a mild drug and it would appear that it isn't doing the job so they the GI should either step up to the next level of drugs, the immunosuppressives (Imuran/6MP), or jump them and go straight to the biologics, which is the top down approach. Of course this is only my opinion!

I am assuming from what you have said that his CD is in his terminal ileum/ileum? I don't think they will broach surgery at this point, except perhaps to say he made need it at some point further down the track, unless there is severe narrowing, perforation, fistula etc.

We have a parents forum here you may like to pop by and have look at...

http://www.crohnsforum.com/forumdisplay.php?f=49

The treatment forum will give you an idea of what's out there in regard to meds etc...

http://www.crohnsforum.com/forumdisplay.php?f=16

And the diet, supplement and exercise forum has loads of useful information...

http://www.crohnsforum.com/forumdisplay.php?f=17

So have a good browse and any questions you my have then please don't hesitate to ask! I hope all goes well with the MRI and you get solid answers from it hun. Good luck and welcome aboard!

Dusty. xxx

 

[xJillx]

Hi and welcome to the forum. As Dusty said, yes, these tests are going to help his GI determine the next course of action. I doubt surgery will be on the table at this point, unless your son's Crohn's is very severe. However, I would expect a stepped up treatment plan. Asacol is meant for those with mild cases, and it is clearly not helping your son. Your son may be looking at 6MP or a biologic. Some of these drugs may take time to work, so his GI may also place your son on steroids for a few weeks to address the inflammation immediately while giving his maintenance drug time to kick in.

I suggest doing a little homework in our Treatment forum to familiarize yourself with the different treatment options, so you can help your son make an education decision on his next course of action.

Good luck to you and your son!


PS - What mesalamine drug was your son first on - was it Lialda? I was on Lialda for about a year and recently stopped, which made me realize Lialda was actually making my symptoms worse. Is your son tolerating Asacol better?

 

[Jessi]

Hello and welcome to the family. :hug:

I'm sorry that you have to watch your own son go through so much. It's great that he has you.
I hope our friends above have answered your questions for you. They are both very respectable and knowledgeable.
Please stick around and get to know the forum. This is the best place I've found for IBD information and support. I hope you feel that way too.

 

[billyjoel]

Hearts2mend welcome aboard and like the other posters say sorry to hear you have to watch your son go through dealing with Crohn's. I noticed that you said he did not tolerate mesalamine, was he allergic to it? What happened? I just am interested because I use it when I flare.

 

[hearts2mend]

thanks for the welcome!

Hi all and thank you so much for the welcome! I feel this group will certainly be the wealth of information I am looking for...the actual personal aspect of living with CD. As far as my son JW goes, this CD diagnosis has been very tough for him to accept.

Just to give you an idea of our family life, we are certainly no strangers to major health issues. Our youngest son Jarod, who is now 13, was diagnosed in utero with a severe congenital heart defect called Hypoplastic Left Heart Syndrome. He had open heart surgery at 2 days old, 6 months old and 2 years old and now they are talking heart transplant. JW has grown up watching his brother in and out of the hospital all his life and I think this scares JW. JW has been extremely healthy until the appendicitis and suspicion of CD. He rarely ever had to take even OTC meds so when he was put on the steroids, ranitidine and Apriso after his first 6 day admission, he became very angry, having to take as many meds as his brother. JW's only other issue was a positive blood test for Celiac but he was cleared by biopsy during all of the CD testing. The rest of our family follows a gluten free diet b/c my husband has biopsy proven Celiac disease and Jarod had positive blood test but they won't biopsy him b/c of his heart. My next investigation will be the link between the two...

I am hoping that JW will come to this group and talk to someone about how he is really feeling. He denies feeling bad but he is also a 17 year old boy who doesn't want to be going through this. I am looking forward to our next GI appt to get more information but it does sound like we need to go to the next class of drugs. JW started with Apriso but, b/c it was that one big dose once a day, he said he felt so much worse with it and had a lot more abdominal pain, etc. The Asacol is divided and he is tolerating that much better. He also HATES taking medicine so I have to wonder what will come next and I worry about the choices he will make when he turns 18 and takes control of his healthcare.

I apologize for the length of the post but I hope that answered all your questions from my original post Thanks again and I hope you all have a very blessed Christmas. Steph

 

[DustyKat]

Hey Steph,

Oh my goodness, you certainly have had more than your fair share...:hug:

I hear you about JW Steph. I had and still do have those same fears and doubts about my daughter. She had a very tumultuous last year of school, emotionally, and moved away to university at the beginning of last year. I absolutely dreaded it and worried about her taking control of her health. She has stepped up to the plate and made sensible decisions both lifestyle wise and medically but I honestly don't know if she is still following her medication regime. She says she is but...well I have my suspicions.
I know that fear you see in your childs eyes too hun. Sarah had a very long and arduous journey to diagnosis but then things happened overnight and bang, she had her diagnosis and has been in remission since. My son was the opposite, lightening fast diagnosis and downhill all the way from there. He has been hospitalised far more than Sarah and endured far more procedures. I saw the fear in her eyes during those hospital visits and it broke my heart.

Your post wasn't lengthy at all hun, it was just fine. Good luck with the GI appointment, I hope it gives you solid direction and your boy lasting relief and remission.

Dusty. xxx