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Advice for medications for 16 yr old

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Crohn's Disease
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Posted 7/31/2009 9:33 PM (GMT 0)
Hi all,

My 16 yr old son just diagnosed with crohn's.    He's never had diarrhea as a symptom and he is in good health right now.  The disease started out about 1 1/2 years ago with a low grade fever and canker sores.  It evolved into stomach pain.  I gave him probiotics and those went away, so it never seemed like Crohn's to us.  He's had this one fissure for about a year and we've tried everything like Mirilax, laxatives, magnesium to try to keep his stools soft so the fissue wouldn't open up again.   He developed a second fissures which prompted us to get tests.   I have since taken him off the stool softeners and I am giving him fiber gummy bears and he's drinking more water and now he's not having problems with the fissures.   So, at this time, he is symptom free and is having normal stools.  The fissures seem like they are healing.

We just got the diagnosis yesterday...ofcourse I am devastated and extremely worried about the meds they want to put him on especially where he seems to be in good health.

He has started on Flagyl and I'm giving him a probiotic as well.  The doctor is thinking of putting him on 6 mp which I'm really concerned about since it might effect his ability to fight off viruses.   Because he's so healthy, I'm worried about the meds more than I am the disease at this time.  I understand the antibiotic because they did find about 5 inches of his terminal illeium that had ulceration, bowel wall thickening, etc.   So we definitely want to take care of this.

I keep thinking I want to just do antibiotics and keep doing what we've been doing.  Has anyone experienced Crohn's without the diarrhea and generally good health?  If so, what did you use for meds?   Am I overreacting about the 6 mp?  

Any advice on experience with treatment would be appreciated.  We are venturing in uncharted territory and it's a scary journey we are about to embark. 

Thanks!!!!!

 

Posted 7/31/2009 9:54 PM (GMT 0)
Antibiotics will not prevent the body's attack on his body. While immunosuppressants do have their downsides, they work very well for many people. I've been on Imuran (similar to 6mp) and haven't had many issues related to fighting off diseases, although I did have bronchitis for a couple months last year.
Posted 7/31/2009 10:19 PM (GMT 0)
I've experienced many years of good health with Crohn's but that was only because of my maintenance meds, I was diagnosed when I was 15 and have been on methotrexate (an immunosuppressant) ever since, its been 7 years I may get the odd sore throat but thats pretty much it, I get given the flu jab since being on it and I don't even seem to get colds I didn't even get freshers flu when I went to uni but I always try to keep hygiene standards high which I think is probably the key thing.

My doctors always said that prevention is better than cure, maybe a maintenance med such as the 6mp would be a good idea to prevent a severe flare up in the future and help heal whats going on at the moment.

Posted 7/31/2009 10:53 PM (GMT 0)
My daughter has never had diarreah, more intermittent constipation. Same age as your son. It's been our experience that under medicating can lead to more problems. This is a matter of opinion of course, and I'm sure you'll get many different viewpoints to help with your decisions. My daughter has been on Imuran for about 6 months now. I had the same concerns about this as you likely do, and as most likely do. So far, she seems to be doing fine with it. Good luck, I hope you get things under control soon. Has you GI suggested Prednisone?

Tom.

Posted 8/1/2009 12:13 AM (GMT 0)
Thanks for the responses. No mention of prednisone yet. I be will talking to his GI on Monday and will discuss treatments. The nurse today said our doctor may have us do some bloodwork to see if he carries the enzyme necessary to metabolize the 6 mp medication. So, he's curently on Flagyl and we'll go from there. Right now I'm just researching as much as possible so I know what to discuss with his GI.
Posted 8/1/2009 9:51 AM (GMT 0)
Again, no expert here, but Prednisone is usually used to bring inflammation under control, then 6mp (same as Imuran), as a maintenance med to keep the immune system down. Prednisone is a serious medication, but infrequent short term use is usually an effective treatment. The dose MUST be tapered down over several weeks with a usual start of about 40mgs. I'm just generalizing here, you'll have to ask a lot of questions to your GI. 

Tom.

Posted 8/2/2009 11:57 AM (GMT 0)
My fear of the 6 mp is that he may not have the ability to fight off other viruses....espcially with Swine Flu floating around. But also, they seem to get sick alot at high school even without having Crohn's. So, I don't want his immune system to be inadequate to the point where he acquiring another illness.
Posted 8/2/2009 2:09 PM (GMT 0)
Most who take the drugs Imuran/6mp do not have an increase in colds or flu. Hopefully more folks who are these meds will be along soon to give you more info. Even if your son did not have Crohns, I would still advise that you have him washing his hands alot. Good luck!
Posted 8/3/2009 1:09 AM (GMT 0)
I too was very concerned about the immune system being overly suppressed, resulting in picking up every bug and virus going. It seems the concensus is that it's not the case for some reason. My daughter hasn't even had a cold since on Imuran. I'm as concerned about Swine Flu as you are though, and think that it might be prudent to consider the vaccine when available. 

Tom

Posted 8/3/2009 11:29 AM (GMT 0)
I've been on all the more common treatments, and haven't noticed any side-effects. If there ever were any, they were indistinguishable from Crohn's itself, and thus moot. I have not had any increased sensitivity to illness or allergies.

When I was first diagnosed, the only symptoms I noticed were increased stool frequency and fissuring on my anus. I figured I just had some kind of diarrhea bug and the toilet paper was irritating my bum, causing the fissures. When I finally went into the hospital, it turned out I was severely anemic and had lost over 50 lbs in the last month. I was immediately put on prednisone to get the inflammation under control, and as soon as that goal was achieved, I took a nice slow taper off it. If your son does go onto prednisone, expect him to be more irritable and get acne breakouts. It's not a pleasant medication, but it is very effective and the particular side-effects it has are relatively easy to deal with.

Anyway, even though your son may not have many of the more noticeable symptoms, keep an eye out for the sneaky ones that he probably won't notice... like weight loss, loss of appetite, fatigue and irritability.

I view any potential side-effects as negligible. I would much rather put up with a longer bout of the flu or fatigue or any other side-effect than spend every waking hour on the toilet screaming in agony until I die. Edit: Come to think of it, that's probably one reason I haven't noticed any. I have bigger fish to fry.
Posted 8/3/2009 2:08 PM (GMT 0)
I have been on 6MP for over a decade. I have gotten less colds and flus than I used to. I always get the flu shot and keep current on the pneumonia shot. The only issue is that when I do get cold it tends to hang around a bit longer and I usually need some antibiotics to finally kill it, but as I said, I rarely get them anymore. The benefits far out way the down side for me. I have avoided further surgery and have been able to live a pretty normal life. I will take that over a cold that sticks around a bit too long once in a while.
Posted 8/3/2009 2:27 PM (GMT 0)
I am in a similar situation as my 14 yr old son probably has Crohns. They can not find it on SBF or scopes but he has an ongoing fistula that he has had four surgeries for. They want to start him on remicade this week but after spending all weekend researching, I think we are going to try low dose naltrexone first. We are going to our family doctor today to discuss all of this. I have Crohns myself, but am in remission. I was massive doses of prednisone and was in the trials for 6mp when it first came out and did really well on it. I am maintained on Lialda and am doing very well. Remicade really scares me on some one so young, that I really want to give naltrexone a try first. I hope I am making the right decision.
Alana
Posted 8/4/2009 2:47 PM (GMT 0)
Are your kids on any type of diet? I'm looking into the diets at this point. Today we are going to a naturopathic doctor to see if he can help us in that area. Naltrexone has not been mentioned as an option to us. What kind of medication is that? My choices are Pentasa and 6 mp. Because my son's crohn's is in an area that we can't get to through a colonoscopy, my doctor wants to go the more agressive route because we will not be able to really monitor him so we want to make sure we can get this under control. We are speaking with her tomorrow about our options. Of course, I would prefer to go with Pentasa and diet but I worry it won't be enough and don't want to make any mistakes here. So, we will probably take Doc's advice and go with 6mp. This is really tough stuff.....our poor kids.
Michelle
Posted 8/4/2009 3:43 PM (GMT 0)

I have not been here in a long, long time....I had a 4+ years remission on Imuran, but my Crohn's flared-up back in November (and is still an issue).

In my experience, you're better off treating the disease and finding a good maintenance med.  Your son has inflammation, yet is relatively "healthy" -- that was me on Imuran (I was underdosed).  So, in those 4 years of symptom-free "health," I developed a stricture and this current flare is the worst one I've ever had...I've been on pred for over 5 months, and just cannot get off of it (personally, while pred brings fast results, I really hate it).  I recently started Humira (which used to really scare me, but I'll do anything to get back into remission).

Personally, I'd rather take the 6mp than the flagyl -- the flagyl can really mess with the natural flora in the gut, and isn't really going to quell the immune response causing the inflammation (I will admit that I have a prejudice against the antibiotics -- had bad reactions to all of them).  Pentasa and the like can work really well for some people, but they don't have a great track record for keeping people in remission.

In my nearly 5 years on Imuran, I can't say that I've been more prone to catching colds/flu (I get a yearly flu shot).  If I do catch a cold, it takes me maybe a day or two longer to get over it.  I work at a hospital, and I haven't caught anything here yet (I wash my hands a lot and keep my hands off my face).  They'll be monitoring your son regularly if he goes on 6mp, and in my experience, my white cell count never dropped out of the normal range (though it tended to hover closer to the bottom of the range).

Good luck, and good health to your son.

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