Some Advice for my son

Hello.  My 23 y.o. son was diagnosed with U.C. a little over a year ago. It was determined by a colonoscopy his colon was %75 affected. He is currently experiencing a flare up I believe.  He has constant stomach pain and goes to the bathroom over 15X a day.

He has been on 60mg of prednesone for two weeks now which hasn't helped.  I don't know all the other meds he's been on but I know one of them was Lialda. He has another colonoscopy scheduled for Nov 18.  At that time the Dr. has mentioned Remicade.  Has anyone here had any experience with low dose Netroxene? I believe is has been promising for Crohns.  I was also reading about acupuncture.  I am very worried about him.  He has no energy and has lost over 25 pounds.  At this point his quality of life is poor and I'm not sure how to help him.  Any advice would be appreciated.

Thanks.

Sorry to hear about your son, yet another young person is afflicted with this disease . I agree with Fruitgirl that if he is not on any rectal meds he should, as they can be very efficetive...rowasa or cortifoam are the two good ones, the first being 5asa based and the second 10% cortisone. My prayers are with him for full remission,

Thank you all for your advice.  I know he has tried yogurt with probiotics before.  He is just really frustrated right now and said nothing seems to work for him.   He still hasn't come to grips with this disease yet.  I'm as frustrated as he is.  I feel so helpless. 

I've been there, and my system didn't change until I radically changed my diet. Doctor's do not want to talk about diet...you have to do it on your own.

First, I would hold of on the colonoscopy until I was more stable. Just put it off a month or so. It's not a pleasant experience unless you are completely knocked out, but just wait on it. If the doctor insists, have your son tell him to give him enough drugs to make sure he doesn't wake up AT ALL.

Listen to the above poster and have him start taking probiotics. I got mine from Trader Joe's. He sounds pretty bad right now so I would start juicing healthy things. Carrot juice, greens, even sweet potato, etc. He needs the nutrition but not the roughage right now. Many fruits and vegetables have anti-inflammatory properties. They can actually stop bleeding, etc. Stop all soda pop, alcohol, and avoid ALL preservatives and additives in foods. Start shopping at health stores.

My belief is that many people develop colitis and other intestinal ailments these days because of our processed food habits. Frozen crap, cakes and breads with additives, soda pop (pretty much burns a hole in our gut), and other things. Also have him quit eating all red meat.

My post may seem rather drastic, but believe me, I've been through it all. Acupuncture sounds ok, but for now I'd concentrate on anti-inflammatory foods and avoiding all "pro-inflammatory" foods. Also the above poster's suggestion on "Proctofoam" is good. I wouldn't do the "Rowasa" though...it's extremely irritating to me. Any hydrocortisone enema would be good. Try to cut back the Prednisone first chance you get. It's a terrible drug to be dependent on.

-John

Sorry, but none of the rectal meds we talked about (rowasa, cortifoam, etc) are available OTC. As for an above poster suggesting he stay away from rowasa, most people tolerate it quite well. ;)

Yogurt is a good source of probiotics, but ones that are found in pill form can have a lot higher live active culture count.

I take the Natural Factors Ultimate Probiotic, which has 12 billion live active cultures and 12 different strains (all Lactobacillus and Bifidobacterium species) of probiotics. Some others are Culturelle and Align. The best way to find different types is to open random posts and read what people have listed in their signatures!

I have no trouble with him taking Remicade because i think that's where he's headed. I'm just not sure how he's going to pay for it. How often do you have an infusion? How long did it take to you noticed a difference? thanks all.

If he doesn't have insurance, have him check out the website below...it has a list of all the meds used to treat UC (infliximab is Remicade) and links to patient assistance programs for them. I seem to remember someone with insurance getting some help with copays, but maybe I'm mistaken.

http://www.needymeds.org/resourcepages/crohns_colitis.shtml

smitty0355 said...
I have no trouble with him taking Remicade because i think that's where he's headed. I'm just not sure how he's going to pay for it. How often do you have an infusion? How long did it take to you noticed a difference? thanks all.

2wks, 4 wks (I think) and now every 8 weeks.

I haven't seen a drop of blood since the day of my first infusion. Really. And before that I bled every single day for all these years.

There are programs to pay for it if he cannot.

I was diagnosed years ago with UC and I've had flare-ups off and on throughout my diagnosis.  I am actually going through a bad one right now.  Its kinda nice to find this site where other people are feeling and/or going through the same things.  I've basically felt so alone because I know no one who has this problem and every time I run to the bathroom I'm fearful I won't make it and I will completely embarrass myself. 

Anywho, off on a tangent there - sorry.  I was going to post about Remicade for your son.  I too used Remicade once and it literally turned off my UC.  I went in one day for the infusion and the next day I was fine.  I loved it.  I have since then switched doctors and I am going the Lialdo route at the moment.  We will see if it does anything.  If not, I am seriously thinking about asking my new doc about another Remicade infusion.  Sweet relief. 

Tell your son that this site is super helpful.  Just to have other people like him makes the disease slightly more tolerable. 

Good luck.

Smitty  ~

Also, pay attention to desdwel's post re: drastic diet changes.  This is tough love. The cold hard facts are that your son's UC is not going away with a few months of Yogurt and slight diet changes. No way.

When he's in flair up, get all junk-food and alcohol and dairy, processed foods out of his diet. It's tough, but I blend everything when in flair-up ~ basically following the advice for diet ( not all his points ) from author Paul Nison.  You don't heal a severly sprained ankle in a few days.  Your son will need drastic diet changes with a severe flair-up as you've described, with time to heal.

Tough to do because many of us still get decent urges to chow down...then we pay the price with cramps, bleeding, etc.  It took me quite a while to realize how to cope with my flair-ups and diet...think LONG term changes.

I go with more vegies, chopped fine or tossed in the blender, lots of homeade soups.  Some yogurts...etc

best to you  both...

Gotta agree with the "diet change" people here. It was only an antifungal diet and natural antifungal supplements that got me well again, now no symptoms or on any meds. I suppose I could say it was "drastic" in that I had to give up things such as ALL processed foods, fast food, alcohol, grains, foods with artificial sweetner, etc. for a time, and ate only whole, natural foods...come to think of it, what is actually wrong with that? :)....but the benefits of feeling better no longer made it a sacrifice for me. And, the change was not overnight, although I felt significantly better after 2 weeks. Took months of healing for me.

Ditto on the rectal meds. They were LIFESAVERS for me. Rowasa was my best friend when I was sick. I am also a firm believer in reputable probiotics.

Change is the key. If you always do what you've always done, expect the same results.

Just an update on my son.  He had his colonoscopy on Wed. His colon is still diseased and inflammed(no suprise). He is starting his first infusion of Remicade today. Thankfully between his insurance and another program they got him in his out of pocket expenses will be minimal.  I forwarded him info on the Paul Nison site and also found an UC cookbook I'm gonna get him.  The GI said it will be some time till he notices a difference with the Remicade.  The first few infusions will be done every two weeks.  If the Remicade doesn't help he may be looking at surgery.