Re: hello! new to this group, second attempt at SCD (doing well!)

[Guest guest]

welcome back! glad you're improving - hang in - are you allergic to yolk and

whites - if not that could help a lot with variety

eileen

>

> Hello, I am a 36 year old software engineer and father of a 1.5 year old boy

(and expecting a girl in December). I was diagnosed with Ulcerative Colitis

about two years ago now although I have probably had it much longer. This last

flare up which led to the definitive diagnosis was preceded by some sort of

stomach issue that was treated with antibiotics. I have not been the same since

then, having lost 25 pounds off an already thin frame. I'm sure that sounds

familiar to many of you.

>

> I tried SCD about a year ago but wasn't fully ready to commit to it then.

Needless to say, I didn't get good results. After nearly exhausting all the

traditional medical alternatives, my GI wanted me to try Humira. That's what it

took to get me to reconsider other alternatives which led me back to SCD.

>

> I have been doing the SCD for six weeks now and I am seeing extremely

> encouraging results. It is now rare and almost shocking to have any blood or

even mucus in my stools. I still have occasional constipation and very thin

stools but the consistency, color, and smell has been improving almost daily.

>

> The first two weeks were very, very difficult. I was very nauseated and

somewhat depressed about everything I had to give up. Eventually my nausea went

away, and I was able to diversify my meals enough to keep me going. Another

challenge has been eliminating all the things that I thought were SCD safe but

are not like certain spices and supplements that I had been using. I am still

actively tweaking the diet to find what works best for me. For example, I don't

tolerate (legal) carbs as well for dinner as I do for breakfast.

>

> At this point, I am down to just 10mg of Prednisone and 150mg of Imuran daily.

I think I could probably taper off of the drugs entirely except that I also

developed pemphigus (an auto-immune disease that has affected me primarily in my

mouth and lips) that is being managed by that same combination of drugs and

hasn't, yet, responded as well to the SCD. It seems that I was allergic to the

mesalamine drugs which I now believe may have contributed to this secondary

condition because it flared up each time I started on a new course of those

drugs.

>

> One of the other challenges for me is that I developed a host of other food

allergies in the past two years that make the SCD that much more difficult for

me. The most difficult ones are allergies to eggs, pork, turkey, avocados, and

bananas. That really limits me, obviously.

>

> One thing that has helped my spirits a great deal is planning out my weekly

menu ahead of time. When I had to think about each meal, one at a time, it just

made it that much more difficult to deal with. Now I know what to expect. It has

also made my wife's life that much easier since she prepares the majority of my

meals.

>

> Anyway, I'm glad that I found this resource. I know from other experiences

that sharing support with other people battling the same circumstances really

helps.

>

[Guest guest]

Hi ,

Welcome to the group! I don’t have Ulcerative Colitis, so

others will have to address your UC concerns (I have Crohn’s). I wanted

to say welcome, and hang in there!

Have you researched LDN? www.LowDoseNaltrexone.org is a good

place to start. It is used for a variety of auto-immune issues. Several of us

on this list use LDN with good results.

Are you able to tolerate the 24 hour SCD yogurt? That, and/or a

probiotic in capsule form will help replenish your gut after the course of

antibiotics. But you probably already know that!

Carol

CD 23 yrs SCD 6 yrs B12 shots LDN cream 1 yr

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of glopez

Hello, I am a 36 year old software engineer and

father of a 1.5 year old boy (and expecting a girl in December). I was

diagnosed with Ulcerative Colitis about two years ago now although I have

probably had it much longer. This last flare up which led to the definitive

diagnosis was preceded by some sort of stomach issue that was treated with

antibiotics. I have not been the same since then, having lost 25 pounds off an

already thin frame. I'm sure that sounds familiar to many of you.

_,_._,___

[Guest guest]

I just wanted to add that mesalamine meds have quite often had negative

reactions for a lot of us - Pentasa in my case, specially when I was up to 16

pills a day, it just made my stomach ache! I tapered off of them pretty soon,

and started SCD sometime after my surgery for small bowel resection and removal

of the terminal ileum.

I too had been on prednisone - upto 65 mg a day just prior to the surgery. One

of the docs was chasing me down with 6MP which I vehemently refused - made him

so very angry, he was quite obnoxious and really quite nasty! I tapered off of

the prednisone a few months after my surgery and eventually started SCD - the

best thing I did.

Considering the foods you are allergic to, maybe you could have some fish and

beef for variety. I take it you can tolerate chicken. Yes, bananas and avocado

are filling items, and easy to grab and eat on the go, so that is a bit

difficult to deal with.

Can you have dairy products? In which case a few slices of cheese, apple sauce,

pear sauce, help for snacking. If you can have yogurt, Dry Curd Cottage Cheese

(used among other things for making cheesecake), they also help as snacky foods.

Just btw, I have frozen the cheesecake in small bottles - it works great when it

is half thawed, chilled, a bit crunchy, so easy to carry. When you are better

healed you can add medjool dates and almond flour baked goods, just not yet, of

course.

Can you have freshly squeezed carrot juice? If you can, then water it down

50-50, add a pinch of salt if you like - refreshing and filling, specially if

you have those cheese slices with it. Just try, say 1/3 of a glass (ie 50%water

and 50% carrot juice) to begin with, to see how it works for you, then you can

slowly increase the quantity upto maybe 1/2 a glass at a time. Eventually, you

may not need to water it down at all.

As healing continues, you will find that some foods you could not eat at the

start, are better tolerated, so take heart in that.

Weekly planning of the menu is definitely very helpful, and it is great that

your wife is handling that aspect of the diet, for cooking is pretty exhausting,

mostly in the beginning, but gets easier with planning ahead.

Your job is one of the stressful professions, what with constant deadlines and

rapid technology upgrades. It would help if you can squeeze in some 'me time'

during the day to just relax and unwind, even if it is to do some deep breathing

for 10 minutes each time. There is a definite brain-gut connection,

physiologically as well as emotionally.

Good Luck!

Suneeti (Crohns, SCD 2000)

[Guest guest]

Thanks for all the suggestions.

I'm not sure about dairy yet. I am experimenting with it as I think it may be

aggravating my pemphigus. I tried eating just egg whites but I think I was

reacting to that as well. I recently took an allergy test from Optimum Health

Resource Laboratories but I haven't gotten the results back yet. Once I do, I

hope I can expand my diet a bit more still.

I am eating almond flour goodies in moderation though I mostly limit them to

breakfast when I seem to tolerate them best. I seem to handle raw veggies and

low glycemic fruits just fine, also in moderation.

Although I am only six weeks in, I was doing well enough before SCD that I am

able to tolerate later stage SCD foods fairly well. Though I was not doing so

bad before, I couldn't get rid of the bleeding altogether so that's what got me

back to the SCD.

>

> I just wanted to add that mesalamine meds have quite often had negative

reactions for a lot of us - Pentasa in my case, specially when I was up to 16

pills a day, it just made my stomach ache! I tapered off of them pretty soon,

and started SCD sometime after my surgery for small bowel resection and removal

of the terminal ileum.

> I too had been on prednisone - upto 65 mg a day just prior to the surgery. One

of the docs was chasing me down with 6MP which I vehemently refused - made him

so very angry, he was quite obnoxious and really quite nasty! I tapered off of

the prednisone a few months after my surgery and eventually started SCD - the

best thing I did.

>

> Considering the foods you are allergic to, maybe you could have some fish and

beef for variety. I take it you can tolerate chicken. Yes, bananas and avocado

are filling items, and easy to grab and eat on the go, so that is a bit

difficult to deal with.

> Can you have dairy products? In which case a few slices of cheese, apple

sauce, pear sauce, help for snacking. If you can have yogurt, Dry Curd Cottage

Cheese (used among other things for making cheesecake), they also help as snacky

foods. Just btw, I have frozen the cheesecake in small bottles - it works great

when it is half thawed, chilled, a bit crunchy, so easy to carry. When you are

better healed you can add medjool dates and almond flour baked goods, just not

yet, of course.

> Can you have freshly squeezed carrot juice? If you can, then water it down

50-50, add a pinch of salt if you like - refreshing and filling, specially if

you have those cheese slices with it. Just try, say 1/3 of a glass (ie 50%water

and 50% carrot juice) to begin with, to see how it works for you, then you can

slowly increase the quantity upto maybe 1/2 a glass at a time. Eventually, you

may not need to water it down at all.

> As healing continues, you will find that some foods you could not eat at the

start, are better tolerated, so take heart in that.

>

> Weekly planning of the menu is definitely very helpful, and it is great that

your wife is handling that aspect of the diet, for cooking is pretty exhausting,

mostly in the beginning, but gets easier with planning ahead.

> Your job is one of the stressful professions, what with constant deadlines and

rapid technology upgrades. It would help if you can squeeze in some 'me time'

during the day to just relax and unwind, even if it is to do some deep breathing

for 10 minutes each time. There is a definite brain-gut connection,

physiologically as well as emotionally.

> Good Luck!

> Suneeti (Crohns, SCD 2000)

>

[Guest guest]

I've seen references to LDN in my reading on this group and elsewhere but I

haven't been able to figure out how to get some?

>

> Hi ,

>

> Welcome to the group! I don't have Ulcerative Colitis, so others will have

> to address your UC concerns (I have Crohn's). I wanted to say welcome, and

> hang in there!

>

> Have you researched LDN? www.LowDoseNaltrexone.org is a good place to start.

> It is used for a variety of auto-immune issues. Several of us on this list

> use LDN with good results.

>

> Are you able to tolerate the 24 hour SCD yogurt? That, and/or a probiotic in

> capsule form will help replenish your gut after the course of antibiotics.

> But you probably already know that!

>

> Carol

>

> CD 23 yrs SCD 6 yrs B12 shots LDN cream 1 yr

>

>

>

> From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf

> Of glopez

>

> Hello, I am a 36 year old software engineer and father of a 1.5 year old boy

> (and expecting a girl in December). I was diagnosed with Ulcerative Colitis

> about two years ago now although I have probably had it much longer. This

> last flare up which led to the definitive diagnosis was preceded by some

> sort of stomach issue that was treated with antibiotics. I have not been the

> same since then, having lost 25 pounds off an already thin frame. I'm sure

> that sounds familiar to many of you.

>

> _,_._,___

>