10 days into SCD with 5 year old daughter...now bloody diarrhea??

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andersceam
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/19/2009 10:29 PM (GMT -6)   
New to the list....we just started SCD with my 5 year old and I could use lots of help.  She was diagnosed 2.5 years ago and after several bad experiences with the standard treatment we started on our alternative treatment path, ultimately leading us to SCD.  We had already implemented many of the things in the diet - minimally processed foods, no 'white sugar', mainly organic/chemical free, minimally processed foods and it made a small difference.  Her inflammation numbers have been high lately.  We started entecor recently, but want to use a few 'drugs' as possible. 
So - we are 10 long days into the diet and she actually started having bloody diarrhea on day 7.  Initially it was only 1-2 BMs per day and no blood.  Now it is 2-3 with blood.  Is it true that it gets worse before it gets better?  Or do I need to reevaluate what I am allowing her??

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/20/2009 12:18 AM (GMT -6)   
I'm sorry to hear that your 5 year old daughter has Colitis. I can understand your wanting to try alternative treatments. Five years old is really young to have Colitis.

Usually I can tell right away when something is working or not working. But everyone is different.

Have you tried any other alternative treatments?

There is vast information on this forum. Hopefully, you can find something that helps.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 1/20/2009 12:42 AM (GMT -6)   

I am so sorry to hear that your child is sick with this crummy disease.  And I am not so sure I would take the it gets worse before it gets better scenario either.  What does your pediatric GI say?  I would err on the side of being overly cauutious with a child of that age.  And if you have already implemented the diet changes with only a worsening, then maybe that isnt the only way to go.  I will keep you and your child in my prayers, as it is bad enough us adults suffer with UC, let alone a child who has difficulty understanding whats going on.  

-------------------------------------------------

yuckygut

diagnosed 1998

now of prednisone and colazal

drink 1 Haldi daily to remain in remission 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 1/20/2009 7:00 AM (GMT -6)   
Not to be discouraging but the SCD diet doesn't work for everyone. It didn't work for me. I am not saying to give up but definitely don't think it is a magic cure. There are other paths worth trying and it is extremely important to keep a journal of what she eats and her reactions to various foods. I have found that I don't tolerate corn well but others have issues with wheat or sugar. Most of us don't tolerate lactose it seems. I hope you can find something that helps your daughter besides medication. I had to give in and start taking 5ASAs because I was too weak and sick to put up with the illness anymore, it was taking over my life. In my case, I think it was the right choice, I feel a lot better. Have you tried any kinds of rectal meds? 2-3 BMs a day is not too bad. I hope she is feeling better soon. It makes me feel so bad when such a young person is afflicted with this terrible illness. Best of luck to you both. If I can help you in any way, feel free to ask.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/20/2009 8:27 AM (GMT -6)   
I think it's time to re-evaluate your treatment regime.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


princesa
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Date Joined Aug 2007
Total Posts : 2204
   Posted 1/20/2009 9:53 AM (GMT -6)   

We can offer more helpful advice if you'll tell us specifically what she's been eating on the SCD. There are many mistakes "newbies" to the diet make that can cause problems initially. Too much nut flour and using beans or raw veggies are examples that, while allowable and fine for people who've been on the diet a while, can pose possible problems for a new person who's still extremely ill and who's colon is in a delicate condition. Also, individuals sometimes have allergies or sensitivities to specific foods that are fine for other people.

In addition to the dietary changes, I'd consider adding omega3 supplements to reduce inflammation and l-glutamine or Mucosaheal for cut healing and to try to stop the bleeding - if you're not doing these things already. I personally believe diet manipulation plays an important part in healing, but used alone is generally not enough. Other healing supplements and probiotics are needed to work in conjunction with the diet.

I'd also check out the SCD listserve or forums where there are more people with a much deeper knowledge of the diet than you'll generally find here.


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


andersceam
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/20/2009 11:00 AM (GMT -6)   
She started out with broiled chicken or hamburgers, homemade jello (grape or apple), and scrambled eggs. 
 
By day 2 I let her have 1/2 a banana, and chicken meatballs.  She didn't have a BM until this day and the first part was formed, the second much looser.  It made me think that maybe the eggs or banana were not being handled well. 
 
Day 4 we added more because the intro diet was hard on her and we had only 1 bm in 3 days with no blood.  We let her have a little cheese and applesauce, and homemade ketchup, no bm that day. 
 
Day 5 same food - small bm, loose.
 
Day 6 - my husband gave her an apple (mistake, he is not as up to speed).  Added canned green beans, no BM.
 
Day 7 - Tried homemade pizza from SCD cookbook (has nutflour), otherwise same food.  2 BM, 2nd with blood, both loose.  Belly hurt at bedtime.
 
Day 8 - finally homemade yogurt (with honey), added grilled steak.  No BM
 
Day 9 - SCD legal sausage, carrot juice.  4 BMs (from 4am to midnight), bloody and loose (i didn't get to see all of them).
 
What is hard is that she doesn't always tell us how she feels, or exaggerates.  She has had this disease since she could talk and probably as long as she remembers (3 years old).  So I don't think she knows how to feel any different.  How soon do you usually have a reaction to a food?  Are eggs something that can be bothersome?  Thanks for any advice.  She is on steroids now anyway because her fecal cal has been high since November.  So she was already somewhat flared up when we started.  We are trying to use this with her meds to get into remission.  Thanks for any help.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/20/2009 11:02 AM (GMT -6)   
My God, 5 years old with this miserable disease...may she be blessed and blessed.

I agree with suebear and I'd have her treatment reviewd asap.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/20/2009 11:55 AM (GMT -6)   
the saddest thing is that you said she doesn't know of any other way to feel- that's got to be true! I can't imagine thinking that those types of bowel habits are "normal", so very, very sad. Think how amazed she'll be when she is finally in remission. Why, may I ask, have you not looked into surgery???? She can't be a happy kid....& you can't be a happy parent, either. My heart goes out to you, really.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/20/2009 12:49 PM (GMT -6)   
andersceam said...
She started out with broiled chicken or hamburgers, homemade jello (grape or apple), and scrambled eggs. 
 
By day 2 I let her have 1/2 a banana, and chicken meatballs.  She didn't have a BM until this day and the first part was formed, the second much looser.  It made me think that maybe the eggs or banana were not being handled well. 
 
Day 4 we added more because the intro diet was hard on her and we had only 1 bm in 3 days with no blood.  We let her have a little cheese and applesauce, and homemade ketchup, no bm that day. 
 
Day 5 same food - small bm, loose.
 
Day 6 - my husband gave her an apple (mistake, he is not as up to speed).  Added canned green beans, no BM.
 
Day 7 - Tried homemade pizza from SCD cookbook (has nutflour), otherwise same food.  2 BM, 2nd with blood, both loose.  Belly hurt at bedtime.
 
Day 8 - finally homemade yogurt (with honey), added grilled steak.  No BM
 
Day 9 - SCD legal sausage, carrot juice.  4 BMs (from 4am to midnight), bloody and loose (i didn't get to see all of them).
 
What is hard is that she doesn't always tell us how she feels, or exaggerates.  She has had this disease since she could talk and probably as long as she remembers (3 years old).  So I don't think she knows how to feel any different.  How soon do you usually have a reaction to a food?  Are eggs something that can be bothersome?  Thanks for any advice.  She is on steroids now anyway because her fecal cal has been high since November.  So she was already somewhat flared up when we started.  We are trying to use this with her meds to get into remission.  Thanks for any help.
 
So, it sounds like she was actually doing fairly well until Day 7, is that correct?
 
For some reason, I also didn't do well on the "intro diet." In my experience, the SCD can be used quite succesfully, but it's not a clear cut, one size fits all kinda deal. It does take some individual adjustments. Also, since you indicate your daughter has been sick for a long time, you have to be prepared for healing to take a proportional amount of time. Alternative therapies such as diet and natural supplements do not give the immediate results that pharmaceuticals sometimes do. As tough as it is, a certain amount of patience is necessary.
 
Over the years, I've found there's a subset of SCD foods that tend to be the most gentle and best tolerated by an inflammed gut. I would suggest the following: very tender baked or broiled white meat of chicken or turkey or mild white fish, scrambled eggs, soft cooked veggies with no peels (green beans, baby English peas, carrots, winter squash, peeled zuchinni), peeled, baked apples and pears, flavored organic apple sauces, very ripe bananas, peanut butter and nut butters. Stews and soups are good choices and blending them can make them even easier to digest. Fruit juices should be diluted half and half with filtered water.
 
The foods I would avoid until she's feeling better and bleeding has stopped are spicy and/or fatty meats, red meat, anything fried, nuts or nut flour products, raw or crispy cooked vegetables, all peelings on vegetables or fruits and I would even try dropping the yogurt for now since many people have problems with dairy - either the lactose or casein, the dairy protein - and try giving her a non-dairy probiotic supplement instead.
 
While she's in this very delicate state, you might also consider supplementing her food with a predigested shake called Absorb Plus that's specially designed to deliver nutrition to the compromised guts of IBDers.
 
I'd also suggest you check with the parents of other small children on the SCD for any kid-specific tips they may have. If you need help getting in touch with SCD groups or have further questions for me, please feel free to email.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 1/20/2009 2:21 PM (GMT -6)   
     My heart goes out to your daughter and you as her mother....I just cannot imagine having a child go through this ordeal.  The best diet that worked for me was a low residue.  I will give you a sampling:
      Breakfast: rice crispy cereal with Silk (I could not tolerate milk at the time).
      Lunch:  1/2 turkey sandwich on white bread, applesauce or jello
      Dinner: baked salmon (this by far, is very soothing to the intestinal tract but I know a five year old's taste may not adapt to it but I hope she could eat some of it), baked sweet potato and cooked (well cooked, almost mushy) carrots.
      Best if she stayed away from raw fruits and vegetables, spicy and fried foods.  You could get a sample of a low residue diet online.
      Good luck and God bless.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/20/2009 4:55 PM (GMT -6)   
andersceam said...
How soon do you usually have a reaction to a food? Are eggs something that can be bothersome?


I usually react to food right away. I'll have severe diarrhea within two hours if I eat something that my body can't handle. (Yes. It can go through me that fast.) However, everyone is different. Some people don't have any response to food, good or bad.

Yes. Eggs bother me when I'm flaring. They are considered to be a pro-inflammatory food so maybe that's why.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Russ Nobbs
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/27/2009 12:35 PM (GMT -6)   
princesa has good suggestions. It sounds like the diet was ok up to a point. Try to go back to that point and follow princsa's suggestions. I was helped immensely by the SCD but not everyone is.

Depending on your options I suggest finding a good naturopath (ND) or even homeopath or an MD who follows complementary and alternative medical practices. I am helped by probiotics and Chinese herbs but those are big pills for a 5 year old.

Edited to add http://www.pecanbread.com/ since it is especially for kids.
Crohn's since 1996, Rx of Sulfa & Pred helped symptoms, but turns out I am deathly allergic to Sulfa. Sulfa nearly killed me with "drug fever" and finally kidney failure. I survived and discovered SCD diet, Chinese herbs, Probiotics, Fish oil. etc. Exploring theory that physical trauma may be root of my autoimmune disease.

Today Rx med free and mostly symptom free. Turned 65 in'08.
SCD does not work for everyone. (Neither does every drug therapy work for every one.)
But SDC DOES work for 1000's of IBD sufferers.

Post Edited (Russ Nobbs) : 6/27/2009 12:45:22 PM (GMT-6)


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/27/2009 1:55 PM (GMT -6)   
it takes along time to heal when you do a diet. Dont' expect it to go away in 7 days. That is impossible. Im doing raw foods diet and have been on it for 2 weeks. i cant expect to see a difference until about 6 months
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1X 500mg pentasa in the morrning and 1 X250g Asacol every other evening
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/27/2009 10:08 PM (GMT -6)   
Congratulations, you've made a wise decision to pursue this course for your daughter.  You have my empathy.  As a UC survivor, I have been through the pain and suffering for 10 years but can't imagine the suffering that you feel because your child has this dreaded disease.  Certainly at this point, I would advocate her taking all of her medications until you notify your physician if you choose to discontinue any of them in the future.

My advice at this time would be to cut out the yogurt. I'm about 8 weeks into the diet and still have problems with it. I would also advocate cutting out the grape juice. For some reason, I would always have bleeding and D after drinking that stuff. I don't know if they add sugar to it or not. Instead of the yogurt at this time, I would look for a probiotic for KIDS that has cellulose, gelatiin, and active bacteria. The probiotic should not have maltodextrose, potato starch, lactose, or soybean oil.

Absolutely no raw fruit, only cooked apples and cooked pears are ok at this stage. If you need help, there are stages of this diet listed on pecanbread.com for the intro diet, stage 1, stage 2, 3, 4, and 5.   NUT FLOUR is a STAGE 4 food, and should not be started initially!  Check out this site for more information.  BTW,  I am in no way affiliated with this site!  Just resources that I have used in my recovery. 

http://www.pecanbread.com/new/scdfoods1.html#beyond


Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.

Post Edited (blueclassring) : 6/27/2009 10:13:32 PM (GMT-6)


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 6/27/2009 11:40 PM (GMT -6)   
It is hard to tell because everyone is so differen't with diet. I don't really follow SCD completely, but some how I slowly improved without help of much drugs, at least for now.

With me it was avoid: wheat, spicey stuff, cheeses, tomato too much Catsup really bothered me, greasy stuff, I stopped peanut butter as well and used Sunflower butter with honey on it instead, many people are allergic to peanuts so I didn't want to take a chance. Some milk was ok but not a lot, soymilk I could tolerate a bit more. Couldn't do yogurt.

Things ok to eat for me: Eggs, softly cooked meats, chicken, fish, banana, turkey, peel apples was ok for me eventually, canned spinach, steamed carrots, spelt flour and some rice for grains, other foods I can't think of right now.


Give Boswellia supplements a try, 3 times a day, it can take over a month and see if they help her symptoms. you can get some side effects if you take too much for too long (as I did double dosage for 2 of 4 months), so don't over do it with Boswellia, but I really think it helped, drink lots water too. Vitamin A, D, E are good to take as well. A and E for healing, D plays a role in immune system functioning and possible link to autoimmune disease. Quality probiotics can be very important as well.

As a note, Asacol and Colazal had me bleeding like crazy, so the drugs don't always do what they say for everyone, soon as I stopped Colazal and took a very low dosage of Sulfasalzine the bleeding stopped the next day.

Prayer is always a good idea.

Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 6/28/2009 3:23 PM (GMT -6)   
Diet is definitely highly individual. Some things irritate some people but not others. Also, the SCD doesn't help everyone.

Considering your daughter is still in an active flare, I'd cut out dairy and anything greasy (like the pizza), and stick to low-fiber foods. Also, omega-3 supplements and probiotics seem to help a lot of people, maybe you should consider using them. You can even just add more fish to her diet to get her lots of omega-3's (considering they're one of the few dietary factors the CCFA backs, I'd definitely put stock in them).

And don't stop her medications unless you talk to a doctor.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 6/28/2009 4:09 PM (GMT -6)   
according to the book, you should do the intro diet first, then after a few days, add one food item at a time. And, it can take up to a month to have any results if it is gonna work. Read chapter 9 of the vicious cycle book. I pray it works for you.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 6/28/2009 4:15 PM (GMT -6)   
Folks, the OP hasn't posted on this thread since she instigated it six months ago.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/28/2009 9:37 PM (GMT -6)   
Wow, I didn't even notice that. Who replied first?
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.

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