Your success rate with SCD - UC patients please reply!

[Guest guest]

My husband Fred has been in a UC flare for most of this year. He began

the SCD April 21, and even though I'm encouraged by his improvement, he

is becoming impatient that he's not in remission yet. When he began the

diet he was also on a daily nutrients bag of 1,250 calories infused

through a picc line, steroids, Asacol, mesalamine and steroid enemas, as

well as Remicade infusions, and supplements with some illegal fillers.

The illegal supplements he dropped within a few days of realizing they

were a no-no. He dropped the Asacol and enemas within a couple weeks of

beginning the diet as well. By mid-May he was off all UC meds but

Remicade. (4th infusion due July 11.) He ended the nutrients bag a week

ago. He does take Actigall for his autoimmune liver disease (bear bile

acid), which has a tiny amount of one illegal filler in it, but he

really NEEDS to take this one. We are following SCD 99.9%.

Fred is interested in knowing other ulcerative colitis patients'

experiences with the success, or lack of success they've achieved while

on the SCD. He wants the good, the bad, and the ugly, but he'd be

especially encouraged by the good! I'll leave it up to the moderator of

this group, as I don't want to tie up the posts, so if you'd rather

reply to my email address, that's fine. It's shelleyhussey@....

Questions:

1) How long were you UCers on the SCD before noticing improvement? Were

you taking other meds at the time?

2) Are any UCers in remission? If so, do you attribute your remission

solely to the SCD? How long have you been in remission?

3) Are any UCers taking meds or natural " meds " such as Bosswelia, in

addition to the SCD?

4) Have any UCers been in remission while on the diet, and then had a

flare? If so, was it brought under control quickly? How? If not, did

medication help bring it under control eventually? How long did it take

to get under control?

5) Have any UCers NOT EVER been in remission while on this diet? If so,

do you stay on it because you feel better, regardless? Have more energy?

Has it caused improvement in your frequency/watery issues even if not

completely successful?

6) When Fred began the diet, he was going on average 8-9 times a day,

very watery. In the last week his average was 4-5/day, until he had a

few 6/day this week. Gets very discouraged when the frequency goes up.

Things less watery, but he has a long way to go. Is his response

typical? I've heard this diet does not produce linear results.

7) He is losing weight after not having the nutrients bag of extra

calories. Cannot eat much of the baked goods, as too much nut flour

gives him diarrhea. I'm going to start making the yogurt with cream,

rather than whole milk. Any other tips for adding weight? He was up to

194 two weeks ago (while on the nutrients bag), now down to 184. (He's

6'4 1/2 " and feels, looks his best in the 190s.)

8) How many UCers have had success with LDN? How long did it take to get

a response? Any negative experiences? Did your gastro prescribe it for

you? If not, who did?

Thank you so much! I'm excited about getting some answers for Fred from

you wonderful people!

Wife of Fred, PSC, 03/04, UC, 03/06, currently flaring, started SCD 04/21/09

(PSC acronym for primary sclerosing cholangitis, an autoimmune liver

disease that tends to " partner " with UC and Crohns.)

[Guest guest]

In just this mornings postings, Kyloie had a great one. Katy

Hello all, I haven't visited this site for a while but wanted to let you know that I had a colonoscopy a couple of months ago and recently finally got around to going to the Doctor to get my biopsy results. All my results were clear and normal, there was no sign of UC. It took me about 3 to 4 years on SCD to get to this stage, and there were some very big ups and downs including a big flare about 2 years into the diet which required me to use prednisolone for the first time. I persevered because I could feel in myself that I was better on the diet than off. I am continuing with the diet and will do so for a long time before I am brave enough to do any experimenting. I am also continuing to take a very low dose of Colazide (2 capsules) as some extra insurance, on my Doctor's recommendation. My quality of life is normal, I enjoy my food and am extremely thankful that I found the SCD. My only frustration is that during my Doctor's consult he advised me that SCD might improve inco-ordination of the bowel but does not work on the inflammation. It seems my clean colonoscopy is not enough proof for a Dr - only a clinical study would be. KylieUC 6 yrsSCD 4 yrs

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