Re: UC question

[Guest guest]

My 14 year old son has UC (just diagnosed on 7/31). He started the diet on August 16th, so it hasn't even been a month, but I'm pretty sure it's helping. He has been really bad about taking his medication - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind him, but he probably only "remembers" about 2/3 of the time. Anyway, he's improving despite that, so I think the diet is helping.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? Yep - it sounds like he is improving fast.Also, check out LDN - it is a great therapy for UC people - much more effective than Asacol.And that has been the experience of many of us now on this list. (It needs to becombined with a restrictive diet as well in order to work.) http://health.groups.yahoo.com/group/lowdosenaltrexone/?yguid=19643Speaking of asacol, you might get the doc to give you sulfasalazine or colazol rather than Asacol, as both of the other two help deal with the bacterial problem. IME, in hindsight, the sulfasalasine (AZULFIDINE) worked better than the colazol, but, as I said, that is in hindsight - and there couldhave been other factors involved, like a deterioration of condition with time so that I cannot be sure. Anyway this is what Elaine said about asacol:Elaine writes: I know that the Asacol seems to be without efficacy for 98% of the people to whom I speak. But the azulfidine does not breed yeast and it is one of the older and more effective drugs. I was told this story by the president of a drug company: In spite of the fact that azulfidine was the tried and tested help for almost 50 years, the patent began running out. (By the way, the azulfidine fools microbes, bacteria and yeast, into picking up a "counterfeit" molecule with which they make their own folic acid and which they need to multiply) The generic drug companies started producing azulfidine since the patent ran out and the big companies now had a competitive product, just as good, but much cheaper. So the big companies started a big hype about the azulfidine: that they had finally found out what the active component was (this was! a lie, they knew for years it minimized the growth of microbes) and that this component would be put in a new breakthrough drug called 5-amino salicylic acid. You know it as Asacol and a few others.The terrible thing about this was that the active component in Azulfidine was not so much 5-amino salicylic acid as it was the sulfated form of para-amino-benzoic-acid which was designed to fool bacteria into picking it up and trying to make their own folic acid out of it (they cannot use preformed folic acid as we do). So every doctor connected with the powers-that-be went about lecturing about this new discovery. I attended a lecture while doing research in London, Ontario at St. ph Hospital and Dr. W. C. Watkins gave the hype on the new drug. I had learned otherwise in microbiology and I raised my hand to say 'BUT WE DO KNOW WHICH COMPONENT IN AZULFIDINE IS MOST EFFECTIVE' and he waved me down. There are better and moreeffective drugs Colazol also works with a twopronged attack: one of the prongs is to keep bacterial growth down.________________________________Also - this is the athletic son - right?Make sure he keeps on exercising, as the endorphins boost (which is what the LDNintensifies) will help him the most with modulating his immune system into wellness. (LDN is incredibly helpful for many people with auto immune health issues.) So exercise is a great natural remedy for him, if he's well enough for it. For myself, I always felt better after exercising, every single time, which is whyat times I would force myself to do it. But I never knew about the gut/endorphinreceptor/exercise connection. I just knew that it provided relief from symptomsand contributed to my overall health. 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.Well, down the line you might have to consider switching GIs or add other people to the team.

[Guest guest]

Hang tough. It took me 3 1/2 years. Steroids made me bleed more. What counts is

he's heading in the right direction. Ron

>

> My 14 year old son has UC (just diagnosed on 7/31). He started the diet on

August 16th, so it hasn't even been a month, but I'm pretty sure it's helping.

He has been really bad about taking his medication - Asacol 800mg 3X/day and

Rowasa enemas. I really do try to remind him, but he probably only " remembers "

about 2/3 of the time. Anyway, he's improving despite that, so I think the diet

is helping.

>

> 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.

>

> Thanks,

> Liz

>

[Guest guest]

Liz,

It took me 3 months on SCD and Lialda to stop bleeding.

I am like a 14 year old because I have troubles remembering to take any meds or vitamins. That's why I asked my GI to prescribe Lialda because it is a sustained release with once a day dosing--perfect for the 14 year old in me. ( I am at least 3 decades more than that!) It is more expensive, but you can get a discount card through the company and it reduced the cost greatly. It also increases the compliance factor.

There have been discussions on here in the past about Vit E suppositories and enemas for UC that help reduce the inflammation in the colon. If you are interested in the study about Vit E enemas and UC ( if you think a 14 yr old would do it) let me know, I'll try to find it and post it.

Even though I have a mild form of UC--proctosigmoiditis, I credit SCD and Lialda for controlling my symptoms so quickly. Use your judgement. It sounds like he is improving rapidly and will continue. Once a day B made my GI yawn.

You're doing a great job!

Terry

UC question

My 14 year old son has UC (just diagnosed on 7/31). He started the diet on August 16th, so it hasn't even been a month, but I'm pretty sure it's helping. He has been really bad about taking his medication - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind him, but he probably only "remembers" about 2/3 of the time. Anyway, he's improving despite that, so I think the diet is helping.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.Thanks,Liz

[Guest guest]

Liz,

It took me 3 months on SCD and Lialda to stop bleeding.

I am like a 14 year old because I have troubles remembering to take any meds or vitamins. That's why I asked my GI to prescribe Lialda because it is a sustained release with once a day dosing--perfect for the 14 year old in me. ( I am at least 3 decades more than that!) It is more expensive, but you can get a discount card through the company and it reduced the cost greatly. It also increases the compliance factor.

There have been discussions on here in the past about Vit E suppositories and enemas for UC that help reduce the inflammation in the colon. If you are interested in the study about Vit E enemas and UC ( if you think a 14 yr old would do it) let me know, I'll try to find it and post it.

Even though I have a mild form of UC--proctosigmoiditis, I credit SCD and Lialda for controlling my symptoms so quickly. Use your judgement. It sounds like he is improving rapidly and will continue. Once a day B made my GI yawn.

You're doing a great job!

Terry

UC question

My 14 year old son has UC (just diagnosed on 7/31). He started the diet on August 16th, so it hasn't even been a month, but I'm pretty sure it's helping. He has been really bad about taking his medication - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind him, but he probably only "remembers" about 2/3 of the time. Anyway, he's improving despite that, so I think the diet is helping.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.Thanks,Liz

[Guest guest]

Liz,

It took me 3 months on SCD and Lialda to stop bleeding.

I am like a 14 year old because I have troubles remembering to take any meds or vitamins. That's why I asked my GI to prescribe Lialda because it is a sustained release with once a day dosing--perfect for the 14 year old in me. ( I am at least 3 decades more than that!) It is more expensive, but you can get a discount card through the company and it reduced the cost greatly. It also increases the compliance factor.

There have been discussions on here in the past about Vit E suppositories and enemas for UC that help reduce the inflammation in the colon. If you are interested in the study about Vit E enemas and UC ( if you think a 14 yr old would do it) let me know, I'll try to find it and post it.

Even though I have a mild form of UC--proctosigmoiditis, I credit SCD and Lialda for controlling my symptoms so quickly. Use your judgement. It sounds like he is improving rapidly and will continue. Once a day B made my GI yawn.

You're doing a great job!

Terry

UC question

My 14 year old son has UC (just diagnosed on 7/31). He started the diet on August 16th, so it hasn't even been a month, but I'm pretty sure it's helping. He has been really bad about taking his medication - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind him, but he probably only "remembers" about 2/3 of the time. Anyway, he's improving despite that, so I think the diet is helping.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.Thanks,Liz

[Guest guest]

>There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

>

Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

Thanks everyone for your responses!

Liz

[Guest guest]

>There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

>

Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

Thanks everyone for your responses!

Liz

[Guest guest]

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's been completely different for me. I've never had mucous, and B only when I'm SUPER flared up. D has always been my issue. The first thing to come and the last thing to go. I've had D 2-3x a day for the past couple/few weeks, but I'm around that three month mark. Hoping it's just the 'three month flare'! I woke up last night with a splitting headache, but it was gone this morning and I feel a lot better today than I did yesterday or the day before. I'm hoping I'm over the hump now! Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

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's been completely different for me. I've never had mucous, and B only when I'm SUPER flared up. D has always been my issue. The first thing to come and the last thing to go. I've had D 2-3x a day for the past couple/few weeks, but I'm around that three month mark. Hoping it's just the 'three month flare'! I woke up last night with a splitting headache, but it was gone this morning and I feel a lot better today than I did yesterday or the day before. I'm hoping I'm over the hump now! Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

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's been completely different for me. I've never had mucous, and B only when I'm SUPER flared up. D has always been my issue. The first thing to come and the last thing to go. I've had D 2-3x a day for the past couple/few weeks, but I'm around that three month mark. Hoping it's just the 'three month flare'! I woke up last night with a splitting headache, but it was gone this morning and I feel a lot better today than I did yesterday or the day before. I'm hoping I'm over the hump now! Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

Interesting how the same disease can affect people differently. I hope

everything calms down for you so you can start adding back some food! I'm

really impressed that you are so dedicated at your age!

Liz

> It's been completely different for me. I've never had mucous, and B

> only when I'm SUPER flared up. D has always been my issue. The first

> thing to come and the last thing to go. I've had D 2-3x a day for the

> past couple/few weeks, but I'm around that three month mark. Hoping

> it's just the 'three month flare'! I woke up last night with a

> splitting headache, but it was gone this morning and I feel a lot

> better today than I did yesterday or the day before. I'm hoping I'm

> over the hump now!

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

Interesting how the same disease can affect people differently. I hope

everything calms down for you so you can start adding back some food! I'm

really impressed that you are so dedicated at your age!

Liz

> It's been completely different for me. I've never had mucous, and B

> only when I'm SUPER flared up. D has always been my issue. The first

> thing to come and the last thing to go. I've had D 2-3x a day for the

> past couple/few weeks, but I'm around that three month mark. Hoping

> it's just the 'three month flare'! I woke up last night with a

> splitting headache, but it was gone this morning and I feel a lot

> better today than I did yesterday or the day before. I'm hoping I'm

> over the hump now!

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

Interesting how the same disease can affect people differently. I hope

everything calms down for you so you can start adding back some food! I'm

really impressed that you are so dedicated at your age!

Liz

> It's been completely different for me. I've never had mucous, and B

> only when I'm SUPER flared up. D has always been my issue. The first

> thing to come and the last thing to go. I've had D 2-3x a day for the

> past couple/few weeks, but I'm around that three month mark. Hoping

> it's just the 'three month flare'! I woke up last night with a

> splitting headache, but it was gone this morning and I feel a lot

> better today than I did yesterday or the day before. I'm hoping I'm

> over the hump now!

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

>

>

>> There have been discussions on here in the past about Vit E

>> suppositories and enemas for UC that help reduce the inflammation

>> in the colon. If you are interested in the study about Vit E enemas

>> and UC ( if you think a 14 yr old would do it) let me know, I'll

>> try to find it and post it.

>>

>

> Gay B. sent me some info on vit. E enemas - mixing it with the

> Rowasa. Is it the same thing? He can handle doing the enemas,

> better than I thought he would. His UC is down at the rectum, so

> enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI

> said he should have stopped bleeding within a month. I thought he

> was making good improvement. I think the GI just wants to push more

> meds. I have to call him on Friday to give an update and then he'll

> decide if my son needs the steroid enemas. I suppose I could forget

> to call until Monday and then wait a little longer to see if he

> really needs them. I've read other stories about people having

> worse bleeding with the steroids and I don't want to get caught in

> that trap.

>

> I'm also looking into the LDN. I just want to get him off of all

> meds as soon as possible. Is LDN a short term thing or would he

> have to stay on it long term?

There does not seem to be a uniformity of opinion on that.

Dr. McCandless takes her ASD kids off when they improve

significantly, but other people think that it is beneficial for

auto-immune people to stay on long term, because it

will help prevent the occurrence of other auto immune

problems - apparently people with the tendency to auto-

immune issues often have more than one problem.

Other people like Dr. Bihari, who helped develop LDN

as a protocol against cancer has everyone in his office

on LDN as a health measure, more like taking health

supplements as a preventative and for general health.

Dr. McCandless also thinks its the best frontline defense

against swineflu - and she mentioned in a recent post

that her entire family except one grown up child is on it

and several of her grandkids.

> I did mention it to the GI and he said he would look into it. I

> didn't know the Asacol was so ineffective. What's the point of it

> then?

Revenue.

Mara

[Guest guest]

>

>

>> There have been discussions on here in the past about Vit E

>> suppositories and enemas for UC that help reduce the inflammation

>> in the colon. If you are interested in the study about Vit E enemas

>> and UC ( if you think a 14 yr old would do it) let me know, I'll

>> try to find it and post it.

>>

>

> Gay B. sent me some info on vit. E enemas - mixing it with the

> Rowasa. Is it the same thing? He can handle doing the enemas,

> better than I thought he would. His UC is down at the rectum, so

> enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI

> said he should have stopped bleeding within a month. I thought he

> was making good improvement. I think the GI just wants to push more

> meds. I have to call him on Friday to give an update and then he'll

> decide if my son needs the steroid enemas. I suppose I could forget

> to call until Monday and then wait a little longer to see if he

> really needs them. I've read other stories about people having

> worse bleeding with the steroids and I don't want to get caught in

> that trap.

>

> I'm also looking into the LDN. I just want to get him off of all

> meds as soon as possible. Is LDN a short term thing or would he

> have to stay on it long term?

There does not seem to be a uniformity of opinion on that.

Dr. McCandless takes her ASD kids off when they improve

significantly, but other people think that it is beneficial for

auto-immune people to stay on long term, because it

will help prevent the occurrence of other auto immune

problems - apparently people with the tendency to auto-

immune issues often have more than one problem.

Other people like Dr. Bihari, who helped develop LDN

as a protocol against cancer has everyone in his office

on LDN as a health measure, more like taking health

supplements as a preventative and for general health.

Dr. McCandless also thinks its the best frontline defense

against swineflu - and she mentioned in a recent post

that her entire family except one grown up child is on it

and several of her grandkids.

> I did mention it to the GI and he said he would look into it. I

> didn't know the Asacol was so ineffective. What's the point of it

> then?

Revenue.

Mara

[Guest guest]

hI -- I also have a 15 year old with UC. We have been doing SCD for 4 years. For

my son, he needs still needs meds. Presently he is taking sulphazine and I do

feel it absolutely helps more than Asacol. His UC is also on the left side and

he takes the enemas as well. I would love the detailed info on adding vit e to

the enema. I once tried a probiotic enema for a few days and it put him into a

flare -- so hesitant to change things -- but I would add vit e to the rowasa if

I had exact dose... so anyone out there who knows about this please post... I

think your son is doing great -- just be on top of it and STEER CLEAR of

steroids for as long as you can. He can become dependent on the steroid enema

and that would be very hard for him to get off of. Feel free to mail me off

line. Judy

>

>

>

> >There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

> >

>

> Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

>

> I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

>

> Thanks everyone for your responses!

> Liz

>

[Guest guest]

hI -- I also have a 15 year old with UC. We have been doing SCD for 4 years. For

my son, he needs still needs meds. Presently he is taking sulphazine and I do

feel it absolutely helps more than Asacol. His UC is also on the left side and

he takes the enemas as well. I would love the detailed info on adding vit e to

the enema. I once tried a probiotic enema for a few days and it put him into a

flare -- so hesitant to change things -- but I would add vit e to the rowasa if

I had exact dose... so anyone out there who knows about this please post... I

think your son is doing great -- just be on top of it and STEER CLEAR of

steroids for as long as you can. He can become dependent on the steroid enema

and that would be very hard for him to get off of. Feel free to mail me off

line. Judy

>

>

>

> >There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

> >

>

> Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

>

> I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

>

> Thanks everyone for your responses!

> Liz

>

[Guest guest]

hI -- I also have a 15 year old with UC. We have been doing SCD for 4 years. For

my son, he needs still needs meds. Presently he is taking sulphazine and I do

feel it absolutely helps more than Asacol. His UC is also on the left side and

he takes the enemas as well. I would love the detailed info on adding vit e to

the enema. I once tried a probiotic enema for a few days and it put him into a

flare -- so hesitant to change things -- but I would add vit e to the rowasa if

I had exact dose... so anyone out there who knows about this please post... I

think your son is doing great -- just be on top of it and STEER CLEAR of

steroids for as long as you can. He can become dependent on the steroid enema

and that would be very hard for him to get off of. Feel free to mail me off

line. Judy

>

>

>

> >There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

> >

>

> Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

>

> I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

>

> Thanks everyone for your responses!

> Liz

>

[Guest guest]

I can't really say how quickly scd helped me because I was basically in some

form of remission when I started but I was diagnosed with UC in high school as

well. I was a year older than your son so I feel kind of like I know what he's

going through. I went back and forth between asacol and asulfadine. The latter

stopped working for me (and it started turning my teeth a little orange). The

asacol was hard to deal with because of how often I had to take it (like your

son I'd often forget a dose, plus for me it was like having a reminder 3x a day

that I'm sick and who wants to feel that way?). I'd really recommend asking

about Lialda. I think that played a big part in me getting off of prednisone.

Unfortunately it took 12 years for a doc to have me switch. And as much as I

dislike doing the rowasa at night I have to admit that it does help (me anyway

and my colitis is in the same spot). It helps to keep them by your bed (as a

reminder) and having a trash can near there as well helps so you can do the meds

and then just turn out the light and go to sleep. I hope your son feels better

really soon. I had to be hospitalized a couple times in high school and had to

go on steroids. And emotionally speaking, that's a bad time to have your body

have to deal with the side effects. Because of it I'm significantly more in

touch with what is and isn't affecting my body but I do still have body image

issues because of it. Bleh! I hope your son doesn't have to go through

anything like that!

Good luck!!

Stacey

>

> My 14 year old son has UC (just diagnosed on 7/31). He started the diet on

August 16th, so it hasn't even been a month, but I'm pretty sure it's helping.

He has been really bad about taking his medication - Asacol 800mg 3X/day and

Rowasa enemas. I really do try to remind him, but he probably only " remembers "

about 2/3 of the time. Anyway, he's improving despite that, so I think the diet

is helping.

>

> 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.

>

> Thanks,

> Liz

>

[Guest guest]

I have UC and was seeing great improvement on the diet (started seriously last

fall with the typical beginner mistakes) as well, with residual bleeding being

my only last symptom as of June thi year. Similar to your son it sounds like -

not a lot at one time, not every bm, but it just wouldn't go away. I found out

that lactose is the #1 filler for Asacol and decided to go without it for a few

days to see how I did - I figured a few days wouldn't hurt and I could always

start it up again - kinda like forgetting it on a weekend trip! That was wihtout

consulting my doc and I would NOT advise anyone to do so, of course My

bleeding stopped within 3-4 days. Now, I have a pretty mild history - only one

major flare in the 3 years since I was dx - but that flare was just last summer.

So, I did tell my doc the next month at my regularly scheduled visit and he

really would like me to take Lialda instead. However, I'm completely symptom

free as long as I moderate my food (too many cashews cause a bit of blood

recently, but it went away after that one bm and cutting the cashews out). so

I've got the script on my fridge and I'm mulling it over. I will perhaps do

more research on LDN and counter with that. Of course, that is just my

experience and you will have to weigh everything for yourself and your son. I

did mention the residual bleeding to my doc and he was never too concerned about

it and it had continued for several months on the Asacol.

Hope this is helpful to you in deciding the next course of action! It's a

tricky road we travel - doing things are own way...

UC, dx Nov 05

no meds, SCD since Nov 08

>

>

>

> >There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

> >

>

> Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

>

> I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

>

> Thanks everyone for your responses!

> Liz

>

[Guest guest]

I have UC and was seeing great improvement on the diet (started seriously last

fall with the typical beginner mistakes) as well, with residual bleeding being

my only last symptom as of June thi year. Similar to your son it sounds like -

not a lot at one time, not every bm, but it just wouldn't go away. I found out

that lactose is the #1 filler for Asacol and decided to go without it for a few

days to see how I did - I figured a few days wouldn't hurt and I could always

start it up again - kinda like forgetting it on a weekend trip! That was wihtout

consulting my doc and I would NOT advise anyone to do so, of course My

bleeding stopped within 3-4 days. Now, I have a pretty mild history - only one

major flare in the 3 years since I was dx - but that flare was just last summer.

So, I did tell my doc the next month at my regularly scheduled visit and he

really would like me to take Lialda instead. However, I'm completely symptom

free as long as I moderate my food (too many cashews cause a bit of blood

recently, but it went away after that one bm and cutting the cashews out). so

I've got the script on my fridge and I'm mulling it over. I will perhaps do

more research on LDN and counter with that. Of course, that is just my

experience and you will have to weigh everything for yourself and your son. I

did mention the residual bleeding to my doc and he was never too concerned about

it and it had continued for several months on the Asacol.

Hope this is helpful to you in deciding the next course of action! It's a

tricky road we travel - doing things are own way...

UC, dx Nov 05

no meds, SCD since Nov 08

>

>

>

> >There have been discussions on here in the past about Vit E suppositories and

enemas for UC that help reduce the inflammation in the colon. If you are

interested in the study about Vit E enemas and UC ( if you think a 14 yr old

would do it) let me know, I'll try to find it and post it.

> >

>

> Gay B. sent me some info on vit. E enemas - mixing it with the Rowasa. Is it

the same thing? He can handle doing the enemas, better than I thought he would.

His UC is down at the rectum, so enemas should be effective.

>

> It's nice to hear that people think he's progressing fast. The GI said he

should have stopped bleeding within a month. I thought he was making good

improvement. I think the GI just wants to push more meds. I have to call him

on Friday to give an update and then he'll decide if my son needs the steroid

enemas. I suppose I could forget to call until Monday and then wait a little

longer to see if he really needs them. I've read other stories about people

having worse bleeding with the steroids and I don't want to get caught in that

trap.

>

> I'm also looking into the LDN. I just want to get him off of all meds as soon

as possible. Is LDN a short term thing or would he have to stay on it long

term? I did mention it to the GI and he said he would look into it. I didn't

know the Asacol was so ineffective. What's the point of it then?

>

> Thanks everyone for your responses!

> Liz

>

[Guest guest]

I have a 15 year old son with UC. The diet was a huge help to him. At

least the doctor is talking about steroid enemas instead of pills.

That seems like it wouldn't have as many side effects. Others on the

list may think differently, but if he's still bleeding on Friday, I

would go ahead and do the enemas to get the bleeding stopped as soon as

possible. The healing can continue with the diet, but I think you need

to take care of the blood. Check with the doctor, but I'd think the

steroid enemas would only be a temporary thing. If he keeps improving

on the diet, hopefully the doctor will come around on it. My son is on

more medication then yours is taking -- he had 2 very rocky years after

he was diagnosed before finding SCD, and it's difficult to know when to

wean off of the meds. It's great that you found the diet so quickly.

Hope this helps.

Cathy

SCD 2007

On Monday, September 7, 2009, at 12:23 PM, caralycalnikmom wrote:

>  

> My 14 year old son has UC (just diagnosed on 7/31). He started the

> diet on August 16th, so it hasn't even been a month, but I'm pretty

> sure it's helping. He has been really bad about taking his medication

> - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind

> him, but he probably only " remembers " about 2/3 of the time. Anyway,

> he's improving despite that, so I think the diet is helping.

>

> 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.

>

> Thanks,

> Liz

>

>

[Guest guest]

I have a 15 year old son with UC. The diet was a huge help to him. At

least the doctor is talking about steroid enemas instead of pills.

That seems like it wouldn't have as many side effects. Others on the

list may think differently, but if he's still bleeding on Friday, I

would go ahead and do the enemas to get the bleeding stopped as soon as

possible. The healing can continue with the diet, but I think you need

to take care of the blood. Check with the doctor, but I'd think the

steroid enemas would only be a temporary thing. If he keeps improving

on the diet, hopefully the doctor will come around on it. My son is on

more medication then yours is taking -- he had 2 very rocky years after

he was diagnosed before finding SCD, and it's difficult to know when to

wean off of the meds. It's great that you found the diet so quickly.

Hope this helps.

Cathy

SCD 2007

On Monday, September 7, 2009, at 12:23 PM, caralycalnikmom wrote:

>  

> My 14 year old son has UC (just diagnosed on 7/31). He started the

> diet on August 16th, so it hasn't even been a month, but I'm pretty

> sure it's helping. He has been really bad about taking his medication

> - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind

> him, but he probably only " remembers " about 2/3 of the time. Anyway,

> he's improving despite that, so I think the diet is helping.

>

> 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.

>

> Thanks,

> Liz

>

>

[Guest guest]

I have a 15 year old son with UC. The diet was a huge help to him. At

least the doctor is talking about steroid enemas instead of pills.

That seems like it wouldn't have as many side effects. Others on the

list may think differently, but if he's still bleeding on Friday, I

would go ahead and do the enemas to get the bleeding stopped as soon as

possible. The healing can continue with the diet, but I think you need

to take care of the blood. Check with the doctor, but I'd think the

steroid enemas would only be a temporary thing. If he keeps improving

on the diet, hopefully the doctor will come around on it. My son is on

more medication then yours is taking -- he had 2 very rocky years after

he was diagnosed before finding SCD, and it's difficult to know when to

wean off of the meds. It's great that you found the diet so quickly.

Hope this helps.

Cathy

SCD 2007

On Monday, September 7, 2009, at 12:23 PM, caralycalnikmom wrote:

>  

> My 14 year old son has UC (just diagnosed on 7/31). He started the

> diet on August 16th, so it hasn't even been a month, but I'm pretty

> sure it's helping. He has been really bad about taking his medication

> - Asacol 800mg 3X/day and Rowasa enemas. I really do try to remind

> him, but he probably only " remembers " about 2/3 of the time. Anyway,

> he's improving despite that, so I think the diet is helping.

>

> 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.

>

> Thanks,

> Liz

>

>

[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