Re: Re: Grrrrr Doctors

[Guest guest]

Remember

that healing is never a linear process, there are going to be frequent ups and

downs during the first year on SCD, less often the 2nd year, and so

on. Most of us on SCD go through a system flare, or regression, about 12

weeks into SCD (or 3 months), and then again at 6 and 9 and 12 months, or some

variation of that. It is the way our bodies heal.

And

tapering off medications, especially steroids, will cause a regression as the

body has to adjust to the loss. As does introducing a “new”

food that our digestions aren’t ready to cope with.

All

of which means that you have to fall back to the easier foods for a week or two

until the symptoms start improving again. It helps to fall back to intro.

diet foods for 2 days or so, to help the digestive symptoms calm down, then add

a few of the softest, easiest-to-digest foods for you. Stay with the safe

foods for several weeks until you feel you are back on track again. Then

go onwards, slowly.

When

it comes to healing our digestions, there aren’t always any other choices

besides SCD and medications. So we have to make it work somehow, even if

it there are these ups and downs. The good thing is that the longer you

are on SCD, the less often the regressions, and the faster we recover from

them.

Kim M.

SCD 6+ years

Sphincter of Oddi dysfunction 7 years

neurological & spinal deterioration 4 years

currently dealing with skin issues on hands and arms

(carcinomas)

>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Sherry,

Thank-you for posting your story. Now, I see there are others

out there. I sit here crying , my husband was up last night all night

went to bathroom 5 times , 3 so far this morning. He has been on diet

10 wks now, first 7 wks things were getting better but I reduced his

steroids and he went into a bad flare,then for extra fun I gave him

lentils because nurse said work on his iron level. He has had this uc

for 5 months now and Lost 44 lbs on the diet 10 wks and gain 0 lost

more. I don't know what to do.

[Guest guest]

Lentils are very advanced.  Have you tried dark chicken, liver and/or pate for iron.  They say shrimp, cherries, shellfish are high in iron.  Spinach, dark leafy greens (if tolerated).  Don't eat with dairy.  Do eat with vitamin C (I spritz everything with lemon juice and drink grape juice) so it absorbs better.  I also recently had iron infusions which seems better than supplements or blood transfusions for me--not sure how you feel about that.

 

Make sure everythign is cooked, peeled and deseeded, no husks for a long time to gain instead of losing.  I just browse--not a moderator or counselor.  Good luck.  I ate a lot of chicken soup and baked fish the first (forever?) and baked chicken.  I'm not sure if it takes longer the worse you are or if crohn's is just worse than the others but eventually it does seem to get better if you avoid the triggers.  I couldn't eat very much fruit for a long time or salads at all.  Kind of hard to find a core group of foods and just work around that until everything starts falling together.  Also, with the yogurt I started with like 1/8t. and took a long time working up. 

 

Good luck, I am sure you are frustrated.  Lots of parmesan, butter (good fats), hold off on baked goods and nut butter maybe, ground meat can cause problems--cuts of meat may be better.

(still don't eat lentils)

 

Remember that healing is never a linear process, there are going to be frequent ups and downs during the first year on SCD, less often the 2nd year, and so on.  Most of us on SCD go through a system flare, or regression, about 12 weeks into SCD (or 3 months), and then again at 6 and 9 and 12 months, or some variation of that.  It is the way our bodies heal.

 

And tapering off medications, especially steroids, will cause a regression as the body has to adjust to the loss.  As does introducing a “new” food that our digestions aren’t ready to cope with.

 

All of which means that you have to fall back to the easier foods for a week or two until the symptoms start improving again.  It helps to fall back to intro. diet foods for 2 days or so, to help the digestive symptoms calm down, then add a few of the softest, easiest-to-digest foods for you.  Stay with the safe foods for several weeks until you feel you are back on track again.  Then go onwards, slowly. 

 

When it comes to healing our digestions, there aren’t always any other choices besides SCD and medications.  So we have to make it work somehow, even if it there are these ups and downs.  The good thing is that the longer you are on SCD, the less often the regressions, and the faster we recover from them.

 

Kim M.

SCD 6+ years

Sphincter of Oddi dysfunction 7 years

neurological & spinal deterioration 4 years

currently dealing with skin issues on hands and arms (carcinomas)

 

>>>>>>>>>>>>>>>>>>>>>>>>>>>> 

 

Sherry, Thank-you for posting your story. Now, I see there are othersout there. I sit here crying , my husband was up last night all night

went to bathroom 5 times , 3 so far this morning. He has been on diet10 wks now, first 7 wks things were getting better but I reduced hissteroids and he went into a bad flare,then for extra fun I gave himlentils because nurse said work on his iron level. He has had this uc

for 5 months now and Lost 44 lbs on the diet 10 wks and gain 0 lostmore. I don't know what to do.

--

41 cd

scd 12/05

[Guest guest]

At 02:55 PM 10/2/2010, you wrote:

My Husband has UC been diganosed

3 years ago. He has ran through the whole gambet of drugs and is

currently on Remicade which was really giving him no major relief and

Surgery was on the horizon. He has been on the SCD diet for about 2

months now. He is feeling fantastic with the diet and reports that 95% of

his UC symptoms are gone. He has other problems that are vexing him which

took him to see his specialist. Who has very clearly stated that he feels

diet has no bearing on UC. Hubby during his sickness has lost 30-40

pounds and is currently holding. But his specialist is insisting that he

go back on Carbohydrates again to build his weight up in case of another

flare up cause he can't afford to lose more weight. Hubby is in with this

plan but I am thinking that it is going to throw him into a flare up and

tail spin again and we are going to have to start all over again to fix

the damage that is done. I know there is little I can do. But I am truly

dreading that first bite of carbs.

I hate people who are ignorant.

SCD is the SPECIFIC Carbohydrate Diet.

It is NOT a LOW carbohydrate diet.

The elimination of crappy grains and potatoes does not mean he is not

eating carbohydrates.

If his doc wants him to add carbs, do it with winter squashes, and

carrots, and homemade yogurt and honey and fruit. Heck, one Medjool date

has 15 grams of carbs! A banana has something like 26 grams of carbs. A

cup of cooked carrots has around 13 grams of carbs. Butternut squash -- a

cup of cubes has 19 grams!

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

preach it sister...you go Marilyn......LOL... Sorry just loved that post...

To: BTVC-SCD Sent: Sat, October 2, 2010 3:26:21 PMSubject: Re: Re: Grrrrr Doctors

At 02:55 PM 10/2/2010, you wrote:

My Husband has UC been diganosed 3 years ago. He has ran through the whole gambet of drugs and is currently on Remicade which was really giving him no major relief and Surgery was on the horizon. He has been on the SCD diet for about 2 months now. He is feeling fantastic with the diet and reports that 95% of his UC symptoms are gone. He has other problems that are vexing him which took him to see his specialist. Who has very clearly stated that he feels diet has no bearing on UC. Hubby during his sickness has lost 30-40 pounds and is currently holding. But his specialist is insisting that he go back on Carbohydrates again to build his weight up in case of another flare up cause he can't afford to lose more weight. Hubby is in with this plan but I am thinking that it is going to throw him into a flare up and tail spin again and we are going to have to start all over again to fix the damage that is done. I know

there is little I can do. But I am truly dreading that first bite of carbs.I hate people who are ignorant.SCD is the SPECIFIC Carbohydrate Diet.It is NOT a LOW carbohydrate diet.The elimination of crappy grains and potatoes does not mean he is not eating carbohydrates.If his doc wants him to add carbs, do it with winter squashes, and carrots, and homemade yogurt and honey and fruit. Heck, one Medjool date has 15 grams of carbs! A banana has something like 26 grams of carbs. A cup of cooked carrots has around 13 grams of carbs. Butternut squash -- a cup of cubes has 19 grams!

— Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle