Re: This wonderful group-male adolescent

[Guest guest]

Joan, thanks for asking about . He is going down from 40 to 35 mg

of prednisone and we are still hoping for improvement. Things are still

shaky but his weight did come back up to 135 pounds on the prednisone.

I am going out to see him the first weekend in December.

As far as drinking goes, had a natural aversion to it even before

we knew he was sick. It is no problem for him to order a soft drink

when the others are drinking. It might be harder for your son if he has

no symptoms to remind him of his heath problem.

My best to you and your son

Lee

>

>

> also wanted to know Lee if your son's uc is finally under control.

[Guest guest]

Joan

As the disease comes into contol so will the weight. I was told I would always have a problem keeping on weight, as was diagnosed with universal colitis at 13. Of all the things that I've been told this one item proved to be the most wrong, if anything I border on the overweight end. Pred & remission always helped me put on and keep on the weight.

will fill out as the disease slows up.

Best from Southern Illinois

jd

UC 1973, Jpouch 2000, pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

Re: This wonderful group-male adolescent

Joan, thanks for asking about . He is going down from 40 to 35 mg of prednisone and we are still hoping for improvement. Things are still shaky but his weight did come back up to 135 pounds on the prednisone. I am going out to see him the first weekend in December.As far as drinking goes, had a natural aversion to it even before we knew he was sick. It is no problem for him to order a soft drink when the others are drinking. It might be harder for your son if he has no symptoms to remind him of his heath problem.My best to you and your sonLee>>> also wanted to know Lee if your son's uc is finally under control.

[Guest guest]

Joan

What I read about URSO suggests that many peoples labs normalizes while taking the stuff, but the disease usually progresses. I think the jury is very much out on high dose URSO for PSC. The results with PBS are very promising, which is while trials continue with PSC patients. I just entered a URSO phase II trial for PSC (Ss #74 in country, #5 in St. Louis area) recently too. Remember to keep your eyes on meld factors as these give a more reliable prediction of the state of the disease.

jd

UC 1973, Jpouch 2000, pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

This wonderful group-male adolescent

I am constantly amazed at the kindness and positivity of this group, even considering the recent minor blow-up.I don't post often but I wanted to wish my best again to Shauna and her family. She seems to be quite an extraordinary individual! I also wanted to know Lee if your son's uc is finally under control. It sounded like he had an awful lot on his plate, even without the health issues. I hope he's doing better. I know that you were so concerned with his weight.I also am curious to know if anyone has knowledge about high dose Urso and long term effects. Our son has been taking high dose Urso for under two months and his liver enzymes just came back as normal. I don't want to get too excited but I am hoping that perhaps Urso can halt the progression of this disease. Any info would be appreciated. Also, I noticed the poll about drinking. Is an occassional drink ok; having a son going off to college next year just makes me curious. is a very cautious kid but all kids want to fit in so who knows?ThanksJoan

[Guest guest]

Thanks JD for these encouraging words. Ironically my son had put on 15

pounds his sophomore year and as a Weight Watcher leader I put him on a

diet to lose 10 pounds as soon as he got home. If only I knew what was

ahead for him then.

Last month he was down to 125 pounds and I was so worried.

Lee Mother of Bill 22 UC/PSC 06/04

> Joan

>  

> As the disease comes into contol so will the weight. I was told I

> would always have a problem keeping on weight, as was diagnosed with

> universal colitis at 13. Of all the things that I've been told this

> one item proved to be the most wrong, if anything I border on the

> overweight end. Pred & remission always helped me put on and keep on

> the weight.

> will fill out as the disease slows up.

>  

> Best from Southern Illinois

>  

> jd

[Guest guest]

Lee

You are most welcome. Don't be so hard on yourself, hind sight is always 20-20. Bill has youth on his side, and a powerful thing this is!

Your Southern Illinois Neighbor

jd

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

Re: This wonderful group-male adolescent

Thanks JD for these encouraging words. Ironically my son had put on 15 pounds his sophomore year and as a Weight Watcher leader I put him on a diet to lose 10 pounds as soon as he got home. If only I knew what was ahead for him then.Last month he was down to 125 pounds and I was so worried.Lee Mother of Bill 22 UC/PSC 06/04> Joan> > As the disease comes into contol so will the weight. I was told I > would always have a problem keeping on weight, as was diagnosed with > universal colitis at 13. Of all the things that I've been told this > one item proved to be the most wrong, if anything I border on the > overweight end. Pred & remission always helped me put on and keep on > the weight.> will fill out as the disease slows up.> > Best from Southern Illinois> > jd