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I really need some advice (please). SCD & drugs.

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Posted 4/9/2014 4:22 PM (GMT 0)
Hey all,

I was diagnosed when I was 21, 3 flares in my life and no surgery. I've been told I am lucky with this disease. Basically I have been almost medication free for over a year, however there is still active inflammation and a stricture right now in my terminal illeum. I have zero symptoms, zero pain, and I'm vegetarian so I already eat very conservatively. I had a CT scan on the weekend that clearly showed I have some issues that need resolving.

I really REALLY don't want to be on something that can cause cancer in the long run (imuran) but I feel as though I don't have a choice. I just started taking 9mg Budesonide and 150mg Imuran daily. I'm going to start the SCD diet shortly (April 19th, once I return from a vacation) and I'm going to schedule a follow up ultrasound/appointment three months from that day. I'm wondering what all of your opinions are, does the SCD diet work, and are these drugs going to kill me?

I feel like I'm losing control and it's scary.

Thanks in advance :(
Posted 4/9/2014 4:45 PM (GMT 0)
Hi! Welcome to the forum and let me preface by saying I have very little knowledge of many drugs for crohns because I also have a very mild case and am currently only on two drugs. I have not had to step up to drugs like Imuran or Humira at this point. Other forum members will be along I am sure that are more knowledgeable on that. One thing I will say is knowledge is power. I know it is scary to think of all the possible side effects but you also have to weigh what is going on now and what that potentially do down the road if not treated. I worry with taking Entocort for my flare right now..but it is helping and I am trying to combine that with healthy eating and exercises still working on that piece tho! Talk to your dr about your concerns. My dr leaves all medication decisions up to me. We talk he gives me my options and then talks about possible side effects but he lets me be in control which is a great feeling. I went for over a decade with no medication because they thought I had IBS. I wonder now if I had been on something could I have slowed this disease down even more. Any time you have inflammation damage is happening and should be addressed.
Many on this forum have also tried SCD and can speak to that.
I hope everything goes well for you!
Posted 4/9/2014 6:25 PM (GMT 0)
I was diagnosed with cd in the colon and a very little bit in the illium in 2007 and I went on the SCD diet, and in 5 months my rectal fistulas were healed and my other symptoms like blood and mucus in my bms were gone.  The only drug I was on was pentassa.  To this day, I am symptom free and have been since 2007 and I still follow the diet.

The scd diet seems to work best in people with CD in the colon and or people with very lttle damage in the illium.  For people who have had CD for years and have a lot of damage in the illium, the scd diet dose not seem to work that well.  

Since you seem to have minimal damage so far, the SCD should help you to control it and keep it from getting worst if you can follow the diet with fanatical dedication.    Since you area a vegitarian already,  it won't be a big deal becoming SCD compliant.  I suggest reading the book "breaking the vicious cycle" which tells you everything you need to know. 

 

Posted 4/9/2014 6:58 PM (GMT 0)
I started SCD in June 2013. I saw a difference very quickly. I am still on medication, but have had fewer flares and far less pain. BMs are near-normal, usually, most of the time.

It is worth the trouble to see if it helps you. If it does, great. if it doesn't, oh well.

But you do have to vigilant. The happy thing after a few months, the carb craving lessens.
Posted 4/9/2014 8:29 PM (GMT 0)
There's been some discussion here about needing to know whether your stricture is scar tissue or active inflammation. If it's active inflammation, the budesonide should help, and the SCD should help you maintain a remission if you can achieve it.

If it's scar tissue I'm pretty sure the only way to resolve that is surgery. There have been some cases here where biologics make things worse by causing strictures to get more narrow in the short term. So I think your plan so far is a good one. I'm sorry that you've had to go on a med you are afraid of, but I think the cancer risk is extremely small. There are other more likely side effects of Imuran that you should keep your eye on.
Posted 4/9/2014 11:31 PM (GMT 0)
hello, im new here...as well

what tests have you done any antibody test or specific crohns tests , or celiac??? Results??? These would all be blood tests.

I started the SCD diet over two years ago... I got alot better..it some what worked but didnt get me there.. but I then modified my diet from that to Paleo /low sugar and starch and that fixed me up.

i see your vegan so this is not for you most likely. If your a vegan you most likely like natural things. But From alot of special testing i think i found my problem .. they say your never cured.. but i dont feel that way right now.. I posted an intro on me and what ive done. Id be happy to give you any input --from what ive done. Its worked for me , but we are all different you may pick up some tips from what i wrote
LOOK at the main page _ youll see a title (HELLO NEW -- guy feels good

You can try a few cheap things... olive leaf extract (google it) kills bacteria and some yeast..

Natural things you can try if your case is minor
1) olive leaf extract pill--- bacteria / and or yeast killer
2) caprylic acid pill -- yeast killer
3) grapefruit seed extract- drops in water-- bacteria killer

Many people eat 2 to 3 spoons of coconut oil a day-- said to be a yeast killer. I did this and still cook with it now

google all three and learn what they are and what effect they have , and how to use them... these may help you.. I used all these rotating them. Be wise and read what they are and how to use them

more isnt better and dont use them all at the same time.. I am not a doctor - but you can read and learn what and how to use them.. You can buy them at your local vitamin shoppe or at amazon
Posted 4/9/2014 11:39 PM (GMT 0)
as well find a probiotic that is free of everything-- that could make you flare..

I found and use RENEW LIFE 50 billion.. been taking for over 2 years.... free of milk,soy, starch,grain, nuts
Posted 4/10/2014 12:47 AM (GMT 0)
I started on Imuran after the prednisone at the beginning. I had 3 rounds of entocort over a year or year and a half. I was told I was steroid dependant. After starting canabis and the SCDiet (as well as Imuran), I never went back to steroids.

I have tried to reduce my Imuran but after a while it catches up to me and I have to go back to 150 mg for a while, but on a average I take 100, 125 mg.

If i run out of cannabis or go off the Diet drastically then I'm into a flare.

I'm still learning. But this disease isn't going anywhere in the near future. So ya got to find out what works for you. And which way you want to go >> meds, natural product or both. But obviously get it under control first, and then experiment.
Posted 4/10/2014 11:45 AM (GMT 0)
The most important part of the SCD diet is the home made yogurt.  Without eating it, you have no way to repopulate your gut wuth good bacteria.  The scd diet kills off the bacteria and yeast in your gut by depriving them the carbs and sugar they thrive on. To get your gut back to normal you have to eat the homemade yogurt to put  the good bacteria back into your intestines. 

Probiotics will not work since they don't contain enough bacteria. To equal the amount of bacteria in one cup of yogurt, you would have to take 100 pobiotic pills. 

Store bought yogurt will not work because most contain sugar, and are not fermented enough to eliminate the lactose. Lactose is a food source for bacteria, so eating store bought yogurt is just feeding the bad bacteria in your gut. 

Home made yogurt fermented 24 hours is the only way to repopulate your gut with good bacteria.  Following scd diet without eating homemade  yogurt is just a waste of your time.   

Posted 4/10/2014 12:54 PM (GMT 0)
I don't know much about drugs and meds but as you can see in your responses that there are veterans here who are very knowledgeable. Perhaps you can find a maintenance med that that affects the site of your inflammation that is milder than Imuran. A mesalamine such as Pentasa? I would think that since you are not on meds right now that a milder drug might be sufficient. I don't know much about this and defer to your doctor.

I am a strong believer in diet affecting IBD but official diets never worked for me. Many of the foods that are illegal under SCD, Paleo, Makers, etc. are perfectly fine for me to eat, and other foods that the SCD considers OK will trigger flares for me. I guess because everyone is different.

So I prefer a food diary. Two very common triggers are gluten and dairy. I suggest avoiding gluten for 2-3 weeks to see if your symptoms lessen. Then try the same for dairy. Many veterans of this disease, whether they believe in diet modification or not, find that their lives are much simpler if they avoid certain foods.

Our signatures indicate some of us find that supplements such as vitamin D, fish oil, PROBIOTICS, and sometimes a soluble fiber such as psyllium. Get your blood levels of vitamin D checked, and while you are at it check your B12 and folate.

Another supplement that might help as far as strictures are concerned is Phosphatidylcholine. It has been used to prevent stricture formation of colonic tissue in animal studies. It couldn't hurt since PC is a wholesome supplement for nutritional support even for healthy people. But be forewarned: I took phosphaticylcholine for a few months after I received my diagnosis and it made me worse.

Most PC is derived from soybeans and one theory is that since 95 percent of soy is GMO, and GMOs are saturated with Roundup (glyphosate) which is associated with gut problems. So I switched to PC from non-GMO soy and sunflowers and no problems. I am not sure if that theory is valid but I do know that for whatever reason I was much better after switching to non-GMO PC.
Posted 4/10/2014 2:10 PM (GMT 0)
NY-Sooner

That is true about the yeast and bacteria-----------------but

for me.. It didnt help me I felt better on SCD and Yogurt. But the very yogurt wasnt helping me. AS yeast feed on milk . What I found was in advanced testing you cant get at the DOCS office only at http://www.elisaact.com/nonhc/our-unique-testing-method.asp I was reactive to the milk.. due to the yeast eating it..Nothing a lactose test or a standard allergy test told me (i came up negative here)later found in other advanced testing. at great plains lab. OAT tests and STOOL tests http://www.greatplainslaboratory.com/home/eng/full_oat.asp and http://www.greatplainslaboratory.com/home/eng/stool.asp take a look at the sample reports ...this really help me out. If your yeast is high it eats the sugars your eating -- milk is a sugar.. your good bacteria wont seed and plant if your over ran. Again this was just my case... you can try the yogurt first...Like he says It may work for you....nothing to loose... but if it doent help look here...

As well if you live in an area in the USA -- and you have a LAB corp get one of your docs to do a IBD EXPANDED panel test # 162045 this checks antibodies( your GP can do it or gastro) its a pass or fail. you can read it your self
ALCA -- sugars
AMCA--- candida yeast
ASCA --- bakers brewers yeast
ACCA---- shell fish etc

if you reactive to sugars only --- then try removing them
if you react to --- AMCA --candida yeast or ASCA-- bakers brewers yeast you will most likely react to ALCA as well as the yeasts from both of these EAT sugar..

Just something I found in my two years of testing etc... I found like 90 percent Of docs dont you the IBD EXPANDED PANEL TEST... as its newer less then 2 years old. for LAB CORP

This test and the great plans really set me in the right direction... I couldnt get any good bacteria in to stick due to the BAD PH level and over growth of yeast.. Nothing my doc look for or at.. Once I fixed this.. My good bacteria rose and rose... Just my experience , we are all different here.. But really worth a try

to me its a starting point-- none of these tests are cheap... from there I did the elisa act test which told me what foods I was reactive to... they matched the IBD EXPANDED PANEL.. I then then fecal gut testing enterolab.. these reactive foods here came back as well as sugars that feed my yeast.

Again just my experience -- could work for other or may not

this is my experience over 2 years doing this test..I found docs dont look at yeast or treat for it all of us on here learned yeast or selves to some degree.

MY OWN STUDY---- :) the first test is when I WAS really sick!!!!!!!! I changed my diet , after OCT I added in natural antifungals that kill yeast and my number dropped in half....as the number got lower i got better and my bacteria began to grow...which I can show in another great plans test result
**** AGAIN **** this was just me. may not work for other *******

IBD expanded PANEL STUDY PALEO eating/low sugar/low starch killing CANDIDA fungus with antifungals

March 2012
ALCA 64 0-60 POSITIVE “negative less 45, Equivocal 45-50, Positive over 60”
AMCA 204 0-100 POSITIVE “negative less 90, Equivocal 90-100, Positive over 100”
gASCA 13 0-50 Negative
ACCA 58 0-90 Negative
pANCA tieter
_________________________________________________________________________________________Oct 2012
ALCA 40 0-60 Negative
AMCA 184 0-100 POISITVE “negative less 90, Equivocal 90-100, Positive over 100”
gASCA 14 0-50 Negative
ACCA 23 0-90 Negative
pANCA Negative
_____________________________________________________________________________________
Feb 2013
ALCA 36 0-60 Negative
AMCA 99 0-100 EQUIVOCAL “negative less 90 , Equivocal 90-100, Positive over 100”
gASCA 21 0-50 Negative
ACCA 16 0-90 Negative
pANCA Negative
____________________________________________________________________________________
May 2013 NEGATIVE FOR ALL
ALCA 35 0-60 Negative
AMCA 74 0-100 Negative
gASCA 13 0-50 Negative
ACCA 16 0-90 Negative
pANCA Negative
_____________________________________________________________________________________
Sept 2013 NEGATIVE FOR ALL
ALCA 23 0-60 Negative
AMCA 58 0-100 Negative
gASCA 11 0-50 Negative
ACCA 18 0-90 Negative
pANCA Negative

DEC 2013 NEGATIVE FOR ALL
ALCA 37 0-60 Negative
AMCA 74 0-100 Negative
gASCA 11 0-50 Negative
ACCA 16 0-90 Negative
pANCA Negative
Posted 4/10/2014 4:40 PM (GMT 0)
Thank you all for your help and responses. I am definitely going to try the SCD diet.

The reason why this is tough for me, is because I literally n e v e r experience any symptoms. It's difficult to treat something that doesn't give me any indication of what's going on. It makes me not want to be on meds, eventhough I know these are necessary to help reduce inflammation and the current stricture I have going on (it's 4cm).

I have done my research and decided that I will never go on humira. I would much rather go on a liquid diet, (although that sounds extreme), the thought of being on something that is likely to give me cancer scares me too much to risk it. Every pharmacist I talk to tells me the same thing, humira is more of a 'heavy hitter' than imuran, it's a new drug and it's riskier. Therefore I will stick with imuran and hope that it works.

I have been lucky, my crohn's hasn't impacted my life barely at all the only thing that gets to me is the medication and side effects.

My GI tries to 'scare' me into taking humira everytime I see her. She's convinced that's the only drug that does anything. I'm really hoping SCD in combination with imuran will help me turn this thing around and show her otherwise.

I am going to take some of those supplements, thank you for your recommendations!

Has anybody else experienced a GI who uses 'scare' tactics and makes you feel like you're going to die everytime you leave their office?! Lol. Sounds crazy but yeah!!

I hope it is inflammation and not scar tissue.
Posted 4/10/2014 4:55 PM (GMT 0)
Read my intro look on the main page " hello new on here "
I wrote a longg message you may find or be able to use some tips from it

My gi chased me out the door....I note that in my intro
Posted 4/10/2014 5:01 PM (GMT 0)
Hi, I'm not sure what your saying ....If you have 0 pain and are living a normal life , for the most part. Why would you even consider taking meds?? My advise, having had 3 surgeries. Don't take meds unless you absolutely have too. Second , go get another GI doctor. Doctors are like mechcanics, some are great others not so much, Its your body !! Sounds like you eat very healthly, there is a book I suggest reading . " Clean Gut " by Dr Alejandro Junger. This guys a Cardiologist trained in NY that was sick and tired of prescribing traditional medicine's. He looks at dealing with the core problem "Naturally" not a quick fix through pain meds and such .I wish you luck !

Hattrick :)

Posted 4/10/2014 5:02 PM (GMT 0)
You can also be taking a bad risk not taking meds you are the only one who can make that choice
Posted 4/10/2014 5:07 PM (GMT 0)
I had no pain then one day bam....it started .it doesnt start over night..why I say read my intro...you maybe able to find your cause from advanced testing
Posted 4/10/2014 5:56 PM (GMT 0)
Guyfeelsgood - I did read it, it is quite interesting. Further testing is something I will consider if SCD proves not to work for me. I will be doing scd and on imuran for 3 months, then have another ultrasound. If nothing improves, I will look into that type of advanced testing.

Hattrick, the reason I have to be on meds eventhough I feel 100% good, is because I have a stricture (4cm) and an area of inflammation in my terminal illeum. I had a CT scan done during my most recent flare (first one in 7 years) on the weekend. If I don't deal with this inflammation and stricture apparently it could get worse, develop scar tissue and cause me to need surgery.

I will NEVER take Humira though. That's for sure :)
Posted 4/10/2014 6:08 PM (GMT 0)
What is your diet if you dont mind me asking??can you list all the foods you eat types etc
Lots of fruit??? Or Beans potatos starches??? Fish person or
All vegan ...or meats ... grain guy breads pastas
Or a mix of it all??? Any foods bug you that you know of


Have you bad any crohns bloods tests???
Posted 4/10/2014 6:24 PM (GMT 0)
Sure I don't mind. I'm Vegetarian so I eat:

-Quinoa
-Veggie products (soy) / tofu
-Vegetables including peppers, carrot, onion, mushroom, zucchini, etc. I don't eat cali or broccoli or kale (too scared they will cause problems)
-Avocado
-Banana
-salads of all sorts (minus Kale)
-No cabbage (trigger!)
-wholegrain bread
-Peanut butter
-Cheeses
-Eggs
-Almond or Soy Milk
-Coffee
-Alcohol - wine
-Lentils
-Chickpeas
-Tomato soup
-minimal pasta
-tons and tons of hot sauce (which I will be stopping with scd ofcourse).
-Yogurt
-Smoothies
-Oatmeal
-Granola
-sweets sometimes
-I sometimes drink coffee with cream instead of almond milk (when I buy it from somewhere).

A lot of these foods will be changing/stopping with SCD.

I have had full bloodwork including the inflammatory marker test, it came back slightly above normal.

So as you can see, I will be cutting out a ton of that crap. Lol
Posted 4/10/2014 6:31 PM (GMT 0)
What we are all not told...is really what a bowel movement should be like...no one tells you this growing up...

Shouldnt be hard as stone ..or hard to pass..
Should nt float...
Be greasy for kill the bathroom from smell
Or be all loose..

Should be from my research solid but forumed yet like soft surve ice cream
Ive read optium time of transit is 12 to 24hrs depending on person and food type.

Im 41 I never had that my whole life until now..and its been two years

Foods effect us all different and can cause inflammation Or breakdown the gut barrier.. A hard stool can open an area to infection.. it comes down to solving that ..fixing yourself....to keep that nasty stuff from getting in and causing infection
Posted 4/10/2014 6:41 PM (GMT 0)
I have a good test for you and maybe others another thing I did!!!! I forgot to mention

Crohns sucks or anyone who wants to try ...try this!!

Create an account on --myfitnesspal.com log all your food you eat every day for two weeks....you can put in food amounts etc drinks beer wine...anything

Report back what it says fat protein carbs and sugar..

You will be surprised what your sugar amount is...
Please take this test.......first you will be scratch ing your head.

Sugar will be high .....yeast eat sugar like a mad man so do bad bacteria
As well crohns sucks ..look at the phase 1 or 2 diet from doug kaufmann www.knowthecause.com simular to scd but finds finds to eat that yeast dont like
On my cell ill look over the food tonight
Posted 4/10/2014 7:43 PM (GMT 0)
Guysfeelsgood, I actually have been using myfitnesspal for months. It's awesome. I am going to be cutting out all sugar, carbs, and anything else 'not legal' according to scd. So hopefully it helps.

Honestly my decision to not go on more serious meds like Remicade or Humira may not be the 'best' solution in the long run, but it's my body and my decision so I'm going to have to tell my GI doc that it's what I choose. With the zero symptoms I experience, the pros of those drugs do NOT outweigh the cons.

I'm hopeful that a positive mindstate, scd diet, and imuran will help. If they don't, I will do advanced testing, acupuncture, and other natural means :)
Posted 4/10/2014 7:52 PM (GMT 0)
As you see from my story...I did no meds...the tests pin pointed it for me

Using standard tests and advanced testing... bei g a vegan your going to have if rough limiting sugar... sugar digests as starch milk and grains..

I would get your gi doc to do the IBD EXPANED PANEL. Before you go to strict..your going to have it hard alot of foods on your list you cant eat scd
Posted 4/11/2014 12:25 PM (GMT 0)
Being symptom free means you are in remission, but you still have to take some sort of medication in order to maintain it. I cannot give any advice on Imuran since I've never tried it, although my GI insists I should. I have a small stricture in the TI, then when I went for a second colonoscopy, the stricture wasn't that bad, which meant it was caused mostly by inflammation. I don't want to think about what would have happened if I wasn;t taking medication daily. Unfortunately with this disease, you can feel just fine, but inflammation is "working" inside sometimes.

Try not to let this rule your life, my opinion is stick to your meds, try to be stress free, exercise, and I'm sure since you have such a mild case of Crohns, you'll be just fine! turn
Posted 4/11/2014 12:42 PM (GMT 0)
I have been symptom free for 7 years while on the SCD diet, but I still take pentassa 1000mg 3 times a day with meals as a precaution.  Pentassa is such a mild drug with very little side effects as compared with immuran o 6mp, so  I don't feel bad about taking it.  My current GI is more conservative and feels that there is no need to take a hard core immune surpresant drug that can do other harm if it is not needed, and he says if pentassa and the diet are working for you, then why change.
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