My Son's Flare Up. Need Advice.

Hi everyone,

I'm new here. I don't have UC, my son does. He got it at age 18. Five weeks of misdiagnoses and he was admitted to the hospital and nearly in shock, with full blown Pan Ulcerative Colitis. Anemic, lost 30 pounds and I never should have listened to the pediatrician or the Internist. I told them he had UC and they laughed at me.

Finally a gastroenterologist diagnosed him over the phone and told us to meet him at the hospital. One colonoscopy later and he was put on Asacol and Rowasa. His bleeding stopped in three days in the hospital. It would take two years to go into remission. He was put on 6-MP 75mg, 4.2 grams of Asacol and 40 mgs of Prednisone. Nothing for two years, but he gained weight and no blood.

We switched him to Lialda and he went into remission in a month! He went off of prednisone. He was in remission for a year and a half. Now he is 22 years of age. He was mostly fine for four years, even if not in full remission. In full remission, it was as if he were never sick. It was a miracle. His colon looked normal.

Over the summer he had a small flare. It was better in a week on 40 mgs Prednisone. We kept him on Prednisone for 3 months and he went back into remission. We tapered slowly from 10 mg down. 1 mg a week and on 6 mg of Prednisone he flared up with ulcers this time. It has been a horrid flare.

In one month, he went from a normal looking colon to having 2/3 of his colon inflamed and ulcers mostly in the rectum and sigmoid colon. So this time his ulcers are down low. He was hospitalized because he dropped weight like a rock and had 6 bloody diarrheas a day. Again he dropped 30 pounds and 20 of it was in the hospital. 20 pounds in ten days! He lost a 1/5 of his weight!

He has no real signs he will flare, until the blood starts. Then it's anyone's guess as to how bad it will be. The weight drops are scary and he looks like a skeleton. His pulse was up and he was in the hospital for 10 days. 7 days of 160mgs of Sulo-medrol. It nearly didn't seem to work, but when they added Canasa, he turned around. Two days of no blood and they released him.

I'm so scared for him. If he flares again, he has no weight to lose. They told him to take Imodium for the diarrhea since his ulcers were in his rectum. Bad move. Hopefully he'll go to the bathroom tomorrow. They put him on 50 mg of Prednisone when they released him. He has other problems. He had conjunctivitis. He has a rash on his arm and a cough. When he flares, these things come with it. His body is attacking other things.

Right now he's on a bland diet the hospital said was good for UC, still on 75 mgs of 6-mp, 4.2 grams Lialda, 50 mg Prednisone and one Canasa a night. The bleeding stopped, but I'm so scared he will flare again. His body is still attacking his skin and his lungs. The cough comes with the flares. I upped him to 60 mgs of Prednisone for a few days. Last flare I upped his 6-mp to 100 mgs for 10 days. The doctor had a fit, but I think upping the 6-mp worked.

He was steroid refractory before 6-mp and it seems unless I up the 6-mg a bit, he's still steroid refractory at times. I saw a tiny bit of blood tonight and I'm freaked out. He is skinny and down and out this time about it all. This flare seems to be from bad Prednisone tapering. He'll need much longer to taper below 20 mgs. Is this a normal reaction to a bad steroid tapering session?

His blood work and Cat Scan showed no real inflammation... but his sigmoidoscopy looked a mess. For all the weight loss, his blood work and markers were fine. They don't want to go to Remicade and seem so sure he'll go into remission. How do they know??? The doctors called Mt. Sinai in New York and were told he was only a moderate flare. Sinai looked at everything and said, release him.

How can he drop so much weight with a moderate flare? The weight drops are worse than anything. He's not anemic and only had blood for two weeks. His high metabolism is a problem with this disease. He can't afford another flare, even if it's mild. He eats, so we have no clue why the huge weight drops. Never more than 6 diarrheas a day. Any advice? Sorry this is so long. I thought I saw a slight tinge of blood and I worry he'll flare out of control. Do the doctors know something I don't? He'll take a long time to gain weight. He's always had a problem gaining weight.

Thanks for listening. Any advice. Am I worrying too much and this is just a bad reaction to Prednisone tapering?

Also, tinkering with the Prednisone is not a really good idea. At 50 mg he's already at a high dose, and increasing it only makes the bad side effects come sooner. Also, it has to be decreased very gradually when lowering the dose to prevent possible adrenal failure.

While Pred seems like a miracle drug, always remember it's also a very dangerous one with the possibility of life-altering long-term effects.

And I don't know how to say this gently, but why are you examining a 22 year-old man's stools for him? He really does have to be able to deal with this himself, since he will have UC for the rest of his life unless he has surgery.

Judy2 said...

And I don't know how to say this gently, but why are you examining a 22 year-old man's stools for him? He really does have to be able to deal with this himself, since he will have UC for the rest of his life unless he has surgery.

Could be she saw blood on the underside of the toilet bowl seat/rim. I know during a flare some blood splashes up there.

At any rate, I HIGHLY suggest a fecal transplant.

See this thread: https://www.healingwell.com/community/default.aspx?f=38&m=2100072&p=1

To Judy2...

My son lives at home. He asked us to look at his bathroom issues. You assume he is not handicapped or has other developmental problems. I did not feel the need to discuss them. It's easy to assume every young adult with UC is 'normal' developmentally or doesn't have a handicap and does not need help. It doesn't work like that.


To everyone else...

Thank you so much! I have not increased any drugs and won't. He's been in the hospital again since I wrote this. Thank you for the advice everyone. He sees his doctor tomorrow. He isn't doing well, but I will leave the medications alone. I think you are all correct there. I appreciate the constructive advice. I will listen to the medication advice and thank you all for the diet advice and issues with dramatic weight loss. I truly appreciate the time you all took to give sound constructive advice. I'll try to relax about the weight, but he's anemic and more. He did not come out of this weight drop very healthy. He's very weak. It seems the blood has stopped, but not the other symptoms. I guess it's a day at a time. Thanks again. Your responses helped me and him. Much appreciated.

As everyone is telling you, do not play with Pred. It seems like blessing at a time but comes with its cost. 50mg is already a high dose and you upped to 60, did you talk to the doc? Weight gain and loss are part and parcel of this condition and it is usually not connected to regular weight gain that is discussed in general society. Weight gain that comes after Pred is just water retention. I am 176lbs from 150 after 2 courses of Pred (30mg) one after the other.

For diarrhea, ask the GI to write him a Rx of Bentyl. Its another blessing with no side-effects (that I have seen so far)

And Mommy, here is the MOST imp part. Tell us what is your son's disability. As a father of a son with special needs, I understand your pain. It IS difficult but unless you tell us, it may not be possible for us to give you right suggestions. May be you should consider maintaining a diary of his schedule and eating habit to see if you find any trigger. My earlier GIs were against diet modification so I eat everything in moderation (vegetarian diet only), gave up on alcohol. But this disorder comes with trial and error, what something worked for someone doesn't mean, will work for you. If you want to keep a track of his medications, you may want to use patientslikeme.com (I use it, I find it easy to check how I am doing with the doses of different medications)

Only thing I can add... Diet never affected me. I always eat healthy and try to stick with organic but other than that I don't restrict what I eat. (I tried more than once with no results). So, since he is losing so much weight I would let him eat whatever he wants to unless you 100% know it affects him in a negative way. My philospohy would be to let him eat what he likes - he is already miserable so why complicate it...