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Posted 12/10/2013 3:04 PM (GMT 0)
Hello, new to this site hopefully I can get some advice and just comfort for anyone out there that has a child with UC and I seem to be more crazy then he is with this crazy ***** disease. My son was diagnosed 4 years ago when he was 14. I should have realized something was wrong when as a small child he would always have very soft stools and as he got older I did notice that he would go often but didn't think anything of it and of course had no idea what UC was.

He began one day to go and actually had me come into the bathroom to see the toilet which had red and when he wiped there was also some on the tissue. I internally freaked but didn't let him see that just said that he may have ate or drank something that made him turn the water that color. He was fine and all was ok until maybe a week later it happened again several times in one day. I immediately had took him to the hospital and they did all these tests and checked his stool for c-diff and just said that he has a virus that will go away. Of course it didn't and finally I decided to call a GI doc to get him in.

He said that he needed to have a colonoscopy so that he could determine what was going on. Let me tell you I was crazy that whole time while they had him in the room, thinking the worst, cancer, and my baby dying. When the doc came out he said that my son has a disease,(which was all I heard before fainting flat out).

Sorry to be longwinded, to shorten my craziness, the doc said that he had UC all throughout his colon and it was very inflamed.
He was put on Asacol 12x/day and prednisone 40mg to start. It took about a month for the symptoms to get better which they did. Of course when he tapered off the pred he got a bit bad again but the doc put him on canasa suppository which worked as well. This went on for a couple of years.

Lately, he has been flaring more often and has been on and off pred for the better part of the last 4 months.
He stopped the Asacol because it was discontinued and the new one was not covered. He is now on Lialda 4x/day and 6mp 100mg per day, folic acid, nexium, bentyl, and pred

He was doing great when he was on 40mg of pred it settled everything down then he began to taper and that's when everything went crazy

he is now on 15mg and has begun to go at least 8-10times per day sometimes just water other times pieces and every now and then he sees some blood.
I tell you this child does not seem to be a crazy as I am about this, there are times that he doesn't even tell me he goes at times and hates when I ask him too many questions.

I don't want to vent any more just want someones opinion on how to handle my issues.
Posted 12/10/2013 3:48 PM (GMT 0)
Welcome to the forum, nuttymommy. I'm sorry your son is having problems with UC.

If this was my child, my first priority would be to get him off pred. It sounds like his disease is not being managed well by the mesalamines. How long has he been on 6mp? It might take a few months for that med to ramp up - in the meantime, it might be a good idea to get him on a rectal mesalamine enema - this will be a much more effective dose than the suppositories. And they come in generics, so won't cost you as much as the Canasa.

When was the last time he was scoped? Is his inflammation still throughout the whole colon?

Is your son open to any dietary changes?
Posted 12/10/2013 4:11 PM (GMT 0)
Welcome to the forum. I was diagnosed when I was 16 and my mom was annoying as hell asking me questions and everything. To be honest, try to calm down on the questions as when it happened to me it stressed me out pretty much more than anything else and IMO made my UC worse. If he doesn't want you to know when he goes then he doesn't want you to know, he doesn't have to tell you if he doesn't want to.

Also based of of what I am seeing.... time to try azathioprine so check what your GI thinks as well.
Posted 12/10/2013 4:12 PM (GMT 0)
nuttymommy,

Welcome to the forum.
I'm sorry about your son's diagnosis and that he is suffering.

As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me in the hopes it might help you too.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) curcumin is an important anti-inflammatory
6) astaxanthin and omega 3's are also important
7) food combining
8) diet modification as in gluten and dairy free, Paleo diet
9) rectal meds help lots of folks out

Despite the decrease in symptoms, I was still BLEEDING very heavily at every BM. The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission. Within a week of starting LDN, the heavy bleeding ( too many times to count with blood clots and mucuous) which I had had for 1 1/2 years straight, went down to ZERO. And that is all thanks to LDN!

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.
Posted 12/10/2013 4:16 PM (GMT 0)
Ditto kazbern.

If you're having a lot of trouble dealing with the fact that he has a chronic illness, it might be a good idea to seek some counseling, as it would do both of you a lot of good.
Posted 12/10/2013 4:30 PM (GMT 0)
Thank you to all for answering so quickly, He was on enemas which his GI took him off of and has been on 6mp for about 5 months now. I had to transition him from a pediatric GI to an adult one and once I did he was great for a while. The new GI told me that he was on too much meds and he need to start to come off of them. He began with the enemas, then, slowly started the weaning of pred from 40 to 20 for 2 weeks to 15 for 2 weeks then when he was on 10 he said that the taper needs to be slower so he was on 10 for 3 weeks when the flare started again. He also began with a new symptom of not wanting to eat which really freaked me out. I know that usually people with UC loose a lot of weight but my son is the opposite he is 6'3 and at his highest was at 315lbs. There has been only one other time that he had a bad flare which caused him to lose 15 lbs in a week. When I tell the doc about the fact he has no appetite he says that it's ok he needs to lose weight anyway. Go figure!!! I
Posted 12/10/2013 4:42 PM (GMT 0)
I responded to you on your other thread. Get away from this GI ASAP.
Posted 12/10/2013 4:48 PM (GMT 0)
hey nutty - welcome _

like kaz said, he really should be on a butt med i.e., mesalamine enemas -

and I kinda agree with the cat man - your son is 18 and assuming he's a normal 18, he probably wants a little control in dealing with a sometimes difficult illness to control -

good luck -

Post Edited (soystud) : 12/10/2013 9:51:15 AM (GMT-7)

Posted 12/10/2013 8:14 PM (GMT 0)
He has been on Pred. for long enough to worry about long term issues. The 6mp should be at therapudic levels by 5 months, and I'll assume you have had the tests to prove that. Rectal meds are not the drug to "get off of", though you may need to switch to a steroid based one like Cortifoam. I am not sure a steady diet of Bentyl is good either, it's an antispasmodic mostly used for IBS. It might be time to consider Remicade. We had 4 plus good remission years on it.
I feel your pain as a mom...keep reading on this site and you will find lots of answers!
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