Kayla update again...

[Guest guest]

Hey everyone,

I don't think Kayla is getting any better. It has been 3 weeks on SCD

and this morning she is running a fever of 101. We have really not

introduced any new foods and she is still bleeding with diarreah,

although last night her stool was formed with just a little blood. But

she did wake up 2 times last night to go and 2 times this morning

which is alot for her, and there was more blood. Now she has the

fever as well. I have not given her the Humira injection yet as I

dont think it is working anyway. I stopped the Asacol because she

seemed to bleed more the couple of days she was taking it. She is

only eating the soup, smoothies with the SCD yogurt, eggs, cheese,

meat, pretty much all the same stuff as last week. She is down to 75

pounds or so. Any thoughts???

Therese with Kayla (13 with UC)

[Guest guest]

Theresa,I don't know if it will work for her or not but I went through a strange phase on SCD a few weeks ago where I was reacting to too much fruit (it was easier than cooking) and had all the same symptoms Kayla is experiencing but, in addition, I was also losing a lot of weight because I wasn't taking in enough calories - and those I was taking in weren't being absorbed because my guts were all torn up from the fruit (fructose) fed bad bacteria so my appetite was declining and I was malnourishing myself.  I corrected the situation by not just cutting back on the fruit (which in Kayla's case doesn't sound like a problem) but by significantly increasing the variety of foods I was eating. It worked spectacularly. My problem wasn't just that I was feeding the bad bacteria with too much fruit sugars but, more importantly, I wasn't giving the good bacteria enough food or variety of foods. I was also not eating as much because I was tired and didn't have enough of an appetite and the lack of variety made food even less appealing. Although I usually stick to adding just one food at a time so I can tell what I can tolerate and what I can't in this case adding more variety and nutrients (especially combining fats, carbs, and protein) made a difference literally over night. My appetite and energy came back and my symptoms from the fructose overload disappeared much faster than I would have expected. I don't know if anyone else has ever experienced this or if it's too risky to recommend but since nothing else appears to be working maybe it's worth considering. I assume that it was new fiber, food combinations that supported each other, significantly increasing the amount of food I was eating, as well as feeling more satisfied after eating, that made it work.The meals I added were basically egg casseroles that were loaded with vegetables (zucchini, spinach, etc.), meat (chicken, hamburger, etc.), and eggs. A friend of mine also came up with an applesauce bread (similar to those on the SCD website) that made breakfast tasty again. I love eating again and I'm eating more and finally gaining weight. And my energy is back.SCD works for me but it's taken me a while to learn what my body is asking for and what it doesn't like. This latest lesson was in variety and quantity. I needed to eat new foods, combine several foods together, and to find things that tasted good enough that I wanted to eat enough of it to break the cycle of fatigue and lack of appetite. I was focusing too much on individual foods that I tolerated and not enough on making meals that I would enjoy.Again, I wouldn't recommend this normally because I find it too difficult to identify what I can tolerate and what I can't if I add too many things at once (in fact I'm back to adding things one at a time now) - but it sounds like you are getting desperate and I imagine that Kayla is probably in need of a little change in her diet. Again, I don't know if it's too risky to try or not - but I found it worked for me and allowed me to stay on the diet instead of going back on meds (which allow me to eat everything but don't actually solve anything). HarveyCrohns 13 yearsSCD 9 monthsMed free and finally gaining weight and enjoying food againOn Dec 31, 2008, at 11:02 AM, Therese Fuhrman wrote:Hey everyone,I don't think Kayla is getting any better. It has been 3 weeks on SCDand this morning she is running a fever of 101. We have really notintroduced any new foods and she is still bleeding with diarreah,although last night her stool was formed with just a little blood. Butshe did wake up 2 times last night to go and 2 times this morningwhich is alot for her, and there was more blood. Now she has thefever as well. I have not given her the Humira injection yet as Idont think it is working anyway. I stopped the Asacol because sheseemed to bleed more the couple of days she was taking it. She isonly eating the soup, smoothies with the SCD yogurt, eggs, cheese,meat, pretty much all the same stuff as last week. She is down to 75pounds or so. Any thoughts???Therese with Kayla (13 with UC)

[Guest guest]

I am so sorry for what you and your daughter are going through. Some people have trouble with the yogurt at first, they even start out just with an eighth of a tsp. a day and still have problems. Do you post on pecanbread.com? That has some really good SCD advisors on it, they've been on SCD for years. Maybe any milk products might be troublesome right now for your daughter? Just a thought? I am so sorry for all the suffering. I wish I could be of more help to you. I know how it feels when nothing seems to help, and she is so thin. How long has she been on Humira? It took 8 weeks to have it help my daughter, but she can no longer take it anymore.I will say a prayer for you and Kayla.Best,BelleSubject: Kayla update again...To: BTVC-SCD Date: Wednesday, December 31, 2008, 9:02 AM

Hey everyone,

I don't think Kayla is getting any better. It has been 3 weeks on SCD

and this morning she is running a fever of 101. We have really not

introduced any new foods and she is still bleeding with diarreah,

although last night her stool was formed with just a little blood. But

she did wake up 2 times last night to go and 2 times this morning

which is alot for her, and there was more blood. Now she has the

fever as well. I have not given her the Humira injection yet as I

dont think it is working anyway. I stopped the Asacol because she

seemed to bleed more the couple of days she was taking it. She is

only eating the soup, smoothies with the SCD yogurt, eggs, cheese,

meat, pretty much all the same stuff as last week. She is down to 75

pounds or so. Any thoughts???

Therese with Kayla (13 with UC)

[Guest guest]

Hi Therese,

I'm so sorry that your daughter is going through such a rough spot right now. Have you tried removing the yogurt? A lot of people have trouble with it and I know that I've read posts in the past from people that said when they cut out the yogurt, the bleeding stopped.

Are you making your yogurt from cow's milk or goat's milk? A lot of people tolerate yogurt made from goat's milk a lot better than cow's milk.

I hope she feels better soon.

Best wishes,

Kim H.

husband, , CD 1999

SCD 2002

Hey everyone,I don't think Kayla is getting any better. It has been 3 weeks on SCDand this morning she is running a fever of 101. We have really notintroduced any new foods and she is still bleeding with diarreah,although last night her stool was formed with just a little blood. Butshe did wake up 2 times last night to go and 2 times this morningwhich is alot for her, and there was more blood. Now she has thefever as well. I have not given her the Humira injection yet as Idont think it is working anyway. I stopped the Asacol because sheseemed to bleed more the couple of days she was taking it. She isonly eating the soup, smoothies with the SCD yogurt, eggs, cheese,meat, pretty much all the same stuff as last week. She is down to 75pounds or so. Any thoughts???Therese with Kayla (13 with UC)

[Guest guest]

Dear Harvey,

Pls let me know if I should take bananas or not, I am taking lots of bananas dailly and cooked and peeled apple only 1 in the morning.

I cannot tolerate any other hard fruit, that is why taking bananas to get some energy, I have nothing else to eat, - no grains at all, no rice , no bread becuase SCD does not allow any.c

NO appetite and contantly losing weigt, weight loss within 1 year is 15 kilos.

Pls suggest

Sandhya

Hey everyone,I don't think Kayla is getting any better. It has been 3 weeks on SCDand this morning she is running a fever of 101. We have really notintroduced any new foods and she is still bleeding with diarreah,although last night her stool was formed with just a little blood. Butshe did wake up 2 times last night to go and 2 times this morningwhich is alot for her, and there was more blood. Now she has thefever as well. I have not given her the Humira injection yet as Idont think it is working anyway. I stopped the Asacol because sheseemed to bleed more the couple of days she was taking it. She isonly eating the soup, smoothies with the SCD yogurt, eggs, cheese,meat, pretty much all the same stuff as last week. She is down to 75pounds or so. Any thoughts???Therese with Kayla (13 with UC)

[Guest guest]

Sandhya-very ripe bananas are great, but protein is what gives us long term energy. As you see, Harvey writes that he ate eggs in vegetable casseroles--eggs are an excellent source of protein. Are you able to get aged cheeses in Vietnam? You need fats and protein. The carbs will come from peeled vegetables that you are able to tolerate. Why don't you bake or fry on low heat your apple and banana with butter or ghee--which is butter that has been cooked to bring the milk solids to the surface, which are then skimmed off. This clarified butter, or ghee, is sometimes easier to digest. What proteins are you eating--you say you have nothing else to eat, do you mean you can not tolerate anything else, or you literally have nothing else to eat? Please clarify. Please tell me what you eat on a daily basis so that I can suggest.

I also have UC--

Regards,

Terry

Re: Kayla update again...

Dear Harvey,

Pls let me know if I should take bananas or not, I am taking lots of bananas dailly and cooked and peeled apple only 1 in the morning.

I cannot tolerate any other hard fruit, that is why taking bananas to get some energy, I have nothing else to eat, - no grains at all, no rice , no bread becuase SCD does not allow any.c

NO appetite and contantly losing weigt, weight loss within 1 year is 15 kilos.

Pls suggest

Sandhya

Hey everyone,I don't think Kayla is getting any better. It has been 3 weeks on SCDand this morning she is running a fever of 101. We have really notintroduced any new foods and she is still bleeding with diarreah,although last night her stool was formed with just a little blood. Butshe did wake up 2 times last night to go and 2 times this morningwhich is alot for her, and there was more blood. Now she has thefever as well. I have not given her the Humira injection yet as Idont think it is working anyway. I stopped the Asacol because sheseemed to bleed more the couple of days she was taking it. She isonly eating the soup, smoothies with the SCD yogurt, eggs, cheese,meat, pretty much all the same stuff as last week. She is down to 75pounds or so. Any thoughts???Therese with Kayla (13 with UC)

[Guest guest]

Make sure the bananas are very ripe (no green on them at all). If you are eating bananas that aren't ripe enough you are making things worse. Ripe bananas are very easy to tolerate (and tasty). I like the banana pancakes (one egg and one ripe banana mashed together and fried like a pancake with honey on top).HarveyDear Harvey, Pls let me know if I should take bananas or not, I am taking lots of bananas dailly and  cooked and peeled apple only 1 in the morning. I cannot tolerate any other hard fruit, that is why taking bananas to get some energy, I  have nothing else to eat, - no grains at all, no rice , no bread becuase SCD does not allow any.c NO appetite and contantly losing weigt, weight loss within 1 year is 15 kilos. Pls suggestSandhya  --- On Wed, 12/31/08, Harvey Garrett <hgarrettadelphia (DOT) net> wrote:From: Harvey Garrett <hgarrettadelphia (DOT) net>Subject: Re: Kayla update again...To: BTVC-SCD Date: Wednesday, December 31, 2008, 12:07 PMTheresa,I don't know if it will work for her or not but I went through a strange phase on SCD a few weeks ago where I was reacting to too much fruit (it was easier than cooking) and had all the same symptoms Kayla is experiencing but, in addition, I was also losing a lot of weight because I wasn't taking in enough calories  - and those I was taking in weren't being absorbed because my guts were all torn up from the fruit (fructose) fed bad bacteria so my appetite was declining and I was malnourishing myself.  I corrected the situation by not just cutting back on the fruit (which in Kayla's case doesn't sound like a problem) but by significantly increasing the variety of foods I was eating. It worked spectacularly. My problem wasn't just that I was feeding the bad bacteria with too much fruit sugars but, more importantly, I wasn't giving the good bacteria enough food or variety of foods. I was also not eating as much because I was tired and didn't have enough of an appetite and the lack of variety made food even less appealing. Although I usually stick to adding just one food at a time so I can tell what I can tolerate and what I can't in this case adding more variety and nutrients (especially combining fats, carbs, and protein) made a difference literally over night. My appetite and energy came back and my symptoms from the fructose overload disappeared  much faster than I would have expected. I don't know if anyone else has ever experienced this or if it's too risky to recommend but since nothing else appears to be working maybe it's worth considering. I assume that it was new fiber, food combinations that supported each other, significantly increasing the amount of food I was eating, as well as feeling more satisfied after eating, that made it work.The meals I added were basically egg casseroles  that were loaded with vegetables  (zucchini,  spinach, etc.), meat (chicken, hamburger, etc.), and eggs. A friend of mine also came up with an applesauce bread (similar to those on the SCD website) that made breakfast tasty again. I love eating again and I'm eating more and finally gaining weight. And my energy is back.SCD works for me but it's taken me a while to learn what my body is asking for and what it doesn't like. This latest lesson was in variety and quantity. I needed to eat new foods, combine several foods together, and to find things that tasted good enough that I wanted to eat enough of it to break the cycle of fatigue and lack of appetite. I was focusing too much on individual foods that I tolerated and not enough on making meals that I would enjoy.Again, I wouldn't recommend this normally because I find it too difficult to identify what I can tolerate and what I can't if I add too many things at once (in fact I'm back to adding things one at a time now) - but it sounds like you are getting desperate and I imagine that Kayla is probably in need of a little change in her diet. Again, I don't know if it's too risky to try or not - but I found it worked for me and allowed me to stay on the diet instead of going back on meds (which allow me to eat everything but don't actually solve anything). HarveyCrohns 13 yearsSCD 9 monthsMed free and finally gaining weight and enjoying food againHey everyone,I don't think Kayla is getting any better. It has been 3 weeks on SCDand this morning she is running a fever of 101. We have really notintroduced any new foods and she is still bleeding with diarreah,although last night her stool was formed with just a little blood. Butshe did wake up 2 times last night to go and 2 times this morningwhich is alot for her, and there was more blood. Now she has thefever as well. I have not given her the Humira injection yet as Idont think it is working anyway. I stopped the Asacol because sheseemed to bleed more the couple of days she was taking it. She isonly eating the soup, smoothies with the SCD yogurt, eggs, cheese,meat, pretty much all the same stuff as last week. She is down to 75pounds or so. Any thoughts???Therese with Kayla (13 with UC)