Re: UC question now Vit E enema study

[Guest guest]

Liz--here is the study. I don't think it is the same thing as Gay's email to you.

Asacol, Rowasa and Lialda are all the same drug. The Rowasa enemas are to deliver locally what he is getting systemically with the Asacol.

I just love the convenience of the once a day dosing with the Lialda. I personally would miss doses if I had to take it more than once or twice a day.

Having a steroid delivered locally in the form of an enema has less systemic absorption than oral, and therefore less side effects.

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.

I am hoping to start LDN in the near future, but my goal is not necessarily to be med free ( though that would be nice)-it is to mange my disease with as little disruption to the rest of my organ systems long term. I already take my Lialda every other day. this is an increase as I had weaned down to once or twice a week, but we went on vacation and I could not entirely mimic my home SCD diet.

http://www.wjgnet.com/1007-9327/14/5990.pdf

Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.

Terry

Re: UC question

>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]

Liz--here is the study. I don't think it is the same thing as Gay's email to you.

Asacol, Rowasa and Lialda are all the same drug. The Rowasa enemas are to deliver locally what he is getting systemically with the Asacol.

I just love the convenience of the once a day dosing with the Lialda. I personally would miss doses if I had to take it more than once or twice a day.

Having a steroid delivered locally in the form of an enema has less systemic absorption than oral, and therefore less side effects.

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.

I am hoping to start LDN in the near future, but my goal is not necessarily to be med free ( though that would be nice)-it is to mange my disease with as little disruption to the rest of my organ systems long term. I already take my Lialda every other day. this is an increase as I had weaned down to once or twice a week, but we went on vacation and I could not entirely mimic my home SCD diet.

http://www.wjgnet.com/1007-9327/14/5990.pdf

Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.

Terry

Re: UC question

>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]

Liz--here is the study. I don't think it is the same thing as Gay's email to you.

Asacol, Rowasa and Lialda are all the same drug. The Rowasa enemas are to deliver locally what he is getting systemically with the Asacol.

I just love the convenience of the once a day dosing with the Lialda. I personally would miss doses if I had to take it more than once or twice a day.

Having a steroid delivered locally in the form of an enema has less systemic absorption than oral, and therefore less side effects.

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.

I am hoping to start LDN in the near future, but my goal is not necessarily to be med free ( though that would be nice)-it is to mange my disease with as little disruption to the rest of my organ systems long term. I already take my Lialda every other day. this is an increase as I had weaned down to once or twice a week, but we went on vacation and I could not entirely mimic my home SCD diet.

http://www.wjgnet.com/1007-9327/14/5990.pdf

Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.

Terry

Re: UC question

>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]

> Bleeding once a day is of concern only if your son is anemic. On this list,

they say that the bleeding is the last symptom to go. That was correct for me,

as well.

>

> Terry

Interesting. His hematocrit was in the low normal range and his RBC's and

Hemoglobin were slightly low, but not low enough that the GI thought he should

do anything about it. I'm just trying to give him a bit more red meat than

normal. My son told me today that the bleeding is less than last week even, but

not stopped.

Sorry to be a bit off topic here - thanks for all the info!

Liz

[Guest guest]

> Bleeding once a day is of concern only if your son is anemic. On this list,

they say that the bleeding is the last symptom to go. That was correct for me,

as well.

>

> Terry

Interesting. His hematocrit was in the low normal range and his RBC's and

Hemoglobin were slightly low, but not low enough that the GI thought he should

do anything about it. I'm just trying to give him a bit more red meat than

normal. My son told me today that the bleeding is less than last week even, but

not stopped.

Sorry to be a bit off topic here - thanks for all the info!

Liz

[Guest guest]

> Bleeding once a day is of concern only if your son is anemic. On this list,

they say that the bleeding is the last symptom to go. That was correct for me,

as well.

>

> Terry

Interesting. His hematocrit was in the low normal range and his RBC's and

Hemoglobin were slightly low, but not low enough that the GI thought he should

do anything about it. I'm just trying to give him a bit more red meat than

normal. My son told me today that the bleeding is less than last week even, but

not stopped.

Sorry to be a bit off topic here - thanks for all the info!

Liz

[Guest guest]

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.the vitamin E suppository is by Carlson's:http://www.nextag.com/serv/main/buyer/productm.jsp Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.Not for me. Mara

[Guest guest]

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.the vitamin E suppository is by Carlson's:http://www.nextag.com/serv/main/buyer/productm.jsp Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.Not for me. Mara

[Guest guest]

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.the vitamin E suppository is by Carlson's:http://www.nextag.com/serv/main/buyer/productm.jsp Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.Not for me. Mara

[Guest guest]

I believe the Carlson supps have 30 IU of Vit E and the study dose was 8000 IU. Some people have done well on this list with the commercial supps.

Terry

Re: Re: UC question now Vit E enema study

You can mimic the study's dose of Vit E in an enema--if you are interested in making this enema for your son, please email me off list, as I feel this is off topic. Vit E obviously has even less side effects than a steroid or Rowasa enema.

the vitamin E suppository is by Carlson's:

http://www.nextag.com/serv/main/buyer/productm.jsp

Bleeding once a day is of concern only if your son is anemic. On this list, they say that the bleeding is the last symptom to go. That was correct for me, as well.

Not for me.

Mara

[Guest guest]

I believe the Carlson supps have 30 IU of Vit E and the study dose was 8000 IU. Some people have done well on this list with the commercial supps. TerryI knew the Carlsons had a lowish amount, but not that the recommended dosage was so high.So are those vitamin e suppositories by prescription? Also - just want to say, my God, the English in that article!Mara

[Guest guest]

Mara,

LOL--you made me go back and read this study ( I haven't looked at it for a year).

The study dose that put the pts. in remission was 8000 IU/day. There is no commercial suppository with that dose---you have to make up the enema yourself. One year ago I did the research for this but never actually made the enema nor tried this. Liz has emailed me off list--I will try to find my instructions, I saved them somewhere, but I'm just put the twins to bed and I'm making yogurt, white bean hummus and tuna for tomorrow. So, if you're interested, email me off list and I'll send it when I find it. I remember it's only a little involved--you have to split open Vit E gelcaps.

To clarify, there are some people on the list who have written that the Carlson 30 IU supps have done them some good.

Terry

Re: Re: UC question now Vit E enema study

I believe the Carlson supps have 30 IU of Vit E and the study dose was 8000 IU. Some people have done well on this list with the commercial supps.

Terry

I knew the Carlsons had a lowish amount, but not that the recommended dosage was so high.

So are those vitamin e suppositories by prescription?

Also - just want to say, my God, the English in that article!

Mara

[Guest guest]

> > Bleeding once a day is of concern only if your son is anemic. On

> > this list, they say that the bleeding is the last symptom to go.

> > That was correct for me, as well.

>

> Not for me.

>

> Mara

>

Me neither...I think it's the first symptom to go for me and it's a concern

regardless of my h&h levels.

Stacey

[Guest guest]

> > Bleeding once a day is of concern only if your son is anemic. On

> > this list, they say that the bleeding is the last symptom to go.

> > That was correct for me, as well.

>

> Not for me.

>

> Mara

>

Me neither...I think it's the first symptom to go for me and it's a concern

regardless of my h&h levels.

Stacey

[Guest guest]

Thanks fr the study info. Interesting! Has anyone out there used vit e in an

enema and had a good result? Details please. Judy

>

> Liz--here is the study. I don't think it is the same thing as Gay's email to

you.

>

> Asacol, Rowasa and Lialda are all the same drug. The Rowasa enemas are to

deliver locally what he is getting systemically with the Asacol.

> I just love the convenience of the once a day dosing with the Lialda. I

personally would miss doses if I had to take it more than once or twice a day.

>

> Having a steroid delivered locally in the form of an enema has less systemic

absorption than oral, and therefore less side effects.

>

> You can mimic the study's dose of Vit E in an enema--if you are interested in

making this enema for your son, please email me off list, as I feel this is off

topic. Vit E obviously has even less side effects than a steroid or Rowasa

enema.

>

> I am hoping to start LDN in the near future, but my goal is not necessarily to

be med free ( though that would be nice)-it is to mange my disease with as

little disruption to the rest of my organ systems long term. I already take my

Lialda every other day. this is an increase as I had weaned down to once or

twice a week, but we went on vacation and I could not entirely mimic my home SCD

diet.

>

>

>

http://www.wjgnet.com/1007-9327/14/5990.pdfhttp://www.wjgnet.com/1007-9327/14/5\

990.pdf>

>

>

> Bleeding once a day is of concern only if your son is anemic. On this list,

they say that the bleeding is the last symptom to go. That was correct for me,

as well.

>

> Terry

>

>

>

>

>

>

>

> Re: UC question

>

>

>

>

> >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

>