Re: UC question

[Guest guest]

Hi Liz,

>

> Here's my question for those of you with UC or knowledge of it. How

long on the diet or medication until all of his bleeding should stop? I

know this is an individual thing, but I'd like to know what other

people's experience has been. He doesn't have D anymore and he's only

having 1-2 BM's a day now and the urgency is pretty much gone. But he

still has B at least once a day. It is at least 50% better according to

him. The GI wants him to go on steroid enemas if the bleeding doesn't

stop by this Friday. I hate the thought of steroids.

>

> Should we give the diet a little longer trial before resorting to the

steroids? The GI isn't thrilled that we're doing the diet to start with,

but my son isn't his kid, so we're sticking with it.

I also have a mild case of UC and was on sulfasalazine for the first

year after being diagnosed. That stopped working after about a year, and

that's when I found SCD. At the time, my only symptom was loose stools.

I've been lucky enough never to have to deal with D, but my symptoms

before diagnosis were always C, bloating, mucous, and blood. The diet

caused major changes in my bowel habits right away, but it took several

months before my stools were consistently firm. I was able to get

completely off the sulfasalazine after being on the diet for a year, and

was med-free for almost 9 months. I never did experience any bleeding

until this year when I had outpatient surgery and received antibiotics

through an IV. Since then, I've had several episodes of bleeding, but

ironically no changes in my stool consistency. For the most part, I have

1-2 BMs daily and they're perfect! (Isn't it sad that we get so excited

about a nice stool?! LOL)

In my case, I resumed taking sulfasalazine in April, but even going back

to the intro diet and resuming meds didn't stop the B. I, like your son,

didn't have much - just traces - but pretty much every day. The only

thing that helped me was using Canasa suppositories. I didn't try

Rowasa, but the Canasa stopped the bleeding within 2 days. I was able to

taper off the Canasa after about 2 weeks. Has he tried Canasa?

I started LDN at the beginning of August and am just now reaching the

recommended dosage of 4.5 mg. A few days ago, I started having small

bits of B again, but I have also started to taper off the sulfasalazine.

So ... not sure what's causing it. It is truly a trial-and-error

process.

Since your son has only just begun the diet, I would continue on with

it. I would do whatever possible to stay away from steriods (simply from

what I've heard from others, not through my own experience, because I've

never taken them). Maybe he could try sulfasalazine instead of Asacol if

he's not allergic to sulfa, and maybe the Canasa suppositories would

work better than the Rowasa. My GI wasn't a big fan of the diet, either,

but I figure that the diet is something that's my choice and it

certainly can't hurt. Especially since your son is not consistent with

his meds, it will probably take longer and be a little more difficult to

get all of his symptoms under control and try to figure out what's

contributing to them than if he was really good about taking them. But

the facts that his BMs have gone down to 1-2 per day and the urgency is

going away are both awesome signs that the diet is working for him,

IMHO! Plus, I've learned that this UC/diet/meds journey is absolutely

one of many ups and downs.

Good luck!

Kathy

UC since 12/05

SCD since 7/07

med free 7/08-4/09

sulfasalazine 1,000 mg daily

LDN since 8/09