This is how I'm going to put my Crohn's into remission

[Jennifer]

Thank you for clearing that up acemagic. I pick posts apart to try and make sure that everything is legit honestly. I've always been protective of the members on the forum even well before I became the administrator.

Infliximab is the same as Remicade. Have you been on Cimzia (a biologic) or Azathioprine/Imuran (supposed to be more mild than 6MP). Also were you ever put on Entocort (a steroid that's more mild than Prednisone but only works in certain areas of the intestine and as a steroid is meant to be temporary) or Mesalamine meds such as Asacol, then there's also sulfa drugs like Azulfidine. Have you talked to your GI about trying Enteral Nutrition? I'm also curious as to what dose of 6MP you took and how long in order for it to cause so much damage (did you have blood work at least once a month while on it?).

Maybe listing the meds like I did above may help you remember which ones you've taken. After 22 years I remember all the meds I've been on but the doses can be harder for me to recall so I understand how things can be forgotten over time.

 

[acemagic]

Okay that's my bad... I haven't been on infliximab. I've been on Imuran. I imagine my doctor didn't put me on Infliximab for the same concern of intestinal narrowing. Imuran also paralyzed me. It happened pretty quickly. It wasn't a listed side effect but I got massive bruising on my legs within a couple of days and then suddenly they were non functional. Scariest moment of my life. That was 6MP. When I started the Imuran I immediately started noticing bruising, so I quit it right away. I unfortunately couldnt tell you the dose. It was way too long ago.

Cimzia doesn't ring a bell. Maybe it's not available up in Canada? Entocort doesn't ring bell either, but Asacol does. I believe I was on that in my earlier years. It's honestly hard to keep track after this long. I've had so many hospital visits that they all blend together. Enternal nutrition is something I would definitely consider if it came down to it. But right now I can eat and still feel okay, so I dont think I'm at that point yet. Im also considering a fecal transplant if it comes down to it, but Im not 100% yet.

-Adam

 

[acemagic]

Hey guys,

It's been exactly 4 months since I last posted, and I wanted to give a solid unbiased update on my condition, as it might help some of you along the way, and I'm hoping to grab some suggestions!

First and foremost, I went strict strict strict diet over the last month or so. I think I've had 2 days total where I cheated, but only because I was out of town. Other than that, I've been rock solid. Meats, fruits, veggies, nuts + seeds. I had some SCD legal cheese a couple of times too. The reason I went so strict is because I got some bad news:

I started feeling a "hardness" in my left butt cheek about 6 weeks ago. I had never had a hemorrhoid before, so I kind of assumed it was that. The hardness wasn't a lump, but more of a "wall". It extended from the inside of my left butt cheek, around the top of my crack (these are technical terms, by the way) and over to my right butt cheek. By the time I noticed it on my right butt cheek a couple of weeks later, I figured I should see a doctor. Also, it burned SOOOO bad sometimes when i went to the bathroom. Also it hurt to sit.. really badly.

Anyways, the doctor says: It's an abscess and I need to go into the hospital to get it removed. Day surgery. no big deal. I took the next day off work, waited for 8 hours in the hospital, only to be told that i'm being put on antibiotics and I should see my GI and come back into the hospital if it gets worse.

Well, it turns out my GI couldn't see me for like 3 weeks, and after 3 days it felt like it was getting worse, so I went back to the hospital. This time, they did a CT scan and gave me the news: Perianal crohns. It wasn't an abscess at all, there was no collection of fluid. But essentially, my crohns has spread to my ass (again, "ass" is the technical term).

Naturally, I was pretty devastated. Not only was my crohn's back, but it was progressing. They gave me another 2 weeks of antibiotics and told me this: The antibiotics won't help get rid of the crohn's, but it's preventative, just in case an abscess forms. That part is important.

So, I start taking even more antibiotics. Cipro and flagyl, 2x daily. I also go strict strict SCD + paleo. Really only eating foods that are approved on BOTH lists. I'm also on 100 million probiotics to counteract the antibiotics.

Day 8 or so after starting the antibiotics and day 4 of being strict paleo: I go through my usual withdrawals. Cravings, exhaustion and those kinds of things.

Day 10 of antibiotics and day 6 of paleo: All of a sudden, my bump on my RIGHT side feels like it's shrinking. Is it the antibiotics? That seems weird considering what the doctor said, plus, why would it take 10 days to start working? I stick with both.. the antibiotics and the diet and I finally get my GI appointment.

My GI says a few things:
1- I'm the poster boy for what NOT to do when I have crohns. I didn't go on any medication and I tried to treat it through diet.
2- I need to go on Humira.
3- The CT scan wasn't the best indicator of what is happening down there, so he wants me to go for an MRI.

Now, I actually genuinely like my doctor, but I left that room feeling like garbage. I don't regret trying to fix myself through diet, I think it was a worthwhile venture, but in the end, I feel like he's right and I need to finally go on drugs.

Flash forward to 4 days ago. I feel umm a bit "wet" in my butt. I go to the washroom, and I'm leaking. I'm leaking a clear fluid through the inside of my butt cheek. The lumps that had appeared all those weeks ago are draining like a popped zit (sorry for the gross detail!).

I haven't stopped "leaking". I'm going to the bathroom every hour or so, just to drain this thing, but here's the kicker: there are no more bumps. There is no more wall of hardness. The draining has effectively drained all the gross clear fluid out of me, and I sit back, thinking about my tummy itself, and I realize... I haven't had a stomach ache, crohn's symptoms or ANY foul smelling gas in months. I've been so focused on my anal problems that I hadn't really thought about my intestines. But I'm actually totally fine. My bowel movements are still loose, but that could be the byproduct of 5 surgeries.

So I contact my doctor via email. I ask him: What is happening with the leakage? Is it a fistula? Or healing, like a zit?

His response is that it was obviously an abscess, and has now formed a fistula and is draining.

Here's my problem with that answer: While I don't deny that it's probably a draining abscess NOW, The CT SCAN said it wasn't an abscess. The CT scan there was no fluid at all. I was also told that the antibiotics wouldn't help the situation, but would prevent an abscess from forming. Yet here I sit, with an abscess, that is spontaneously draining and potentially healing itself. Any why are my guts feeling fantastic?

So the question is: Is the diet actually working? Or are the antibiotics shrinking an abscess that actually was there the whole time? If so, why did they take so long to kick in? I thought antibiotics take only a few days to work. Maybe things were THAT bad??

So here I sit. Scheduled to go on Humira for a disease that I'm not even sure is present anymore. I have an MRI scheduled for December 31st too to determine what is in my butt, but by the time Dec 31st rolls around, I can't fathom ANYTHING being there. I don't think I can go back to my doc and refuse the Humira again without feeling like a total idiot or him disowning me. I'd actually like to request a colonoscopy, but I'm sure he would scoff at that too, since I just had one around February, which showed active disease.

Whether I go on humira or not (I think I "have to", just to appease my loved ones and tackle this from both sides), what KILLS me is that I don't think I'm ever going to "know" I'm definitely going to stick to the Paleo/SCD stuff because my guts are showing the results, but I'm not sure what to do at this juncture.

What do you guys think? Request a colonoscopy? Start on the drugs even though they may not be necessary? Looking forward to your responses! Thanks so much!

-Adam

 

[JohnnyRottenAppleseed]

Dude, I was where you are a few years ago. I have been off all crhons meds for two years, and no antibiotics for over a year. Those things will come and go and drain until they disappear. They could get worse, I'm not a fortune teller. Just realize that Humira is a nuclear bomb. If you are symptom free, why take the risks? "Fatal Events"? Really? I would choose wisely. My doctor was angry I refused Humira. I was also put into remission with cipro and flagyl and cooking whole organic foods and probiotics. Make sure you take S Bhoulardii and a probiotic with bifidus and acidophilus. You can also eat organic yogurt for probiotics but definitely use the S Bhoulardii.

 

[Ozboz]

I'm on falgyl now and I'm in horrible pain

 

[JohnnyRottenAppleseed]

Paleo is the way to go. Google "American Gut". They are finding that paleo diet favors a gut flora that is anti inflammatory.

 

[kiny]

Don't know what to tell you but please take care of yourself.

I personally would never put my life into the hands of a diet to treat a serious disease.

I know some don't agree, but there is not one single shred of evidence that diets like paleo or SCD help for crohn's disease.

Listen to your doc please, or find a doc you feel comfortable with.

Don't become one of those people who loses their intestine because they thought they could do it on their own, every single one would have listened to their doc if they could go back in time.

I feel diets like SCD and Paleo cause much more harm to this community than good. There are people who use those diets while under supervision and treatment of their doctor, which is fine, and there are people who use those diets because they think it's going to help them treat their disease on their own.

Don't be like those people, because you will regret it. And the reason doctors aren't advising people to go on those diets is because they have also seen those people, and those people end up losing their intestine. Doctors are there to help you, listen to them please.

If you don't like a doc, then find one you do like, but don't throw all of their advice overboard, this isn't a disease you can just treat on your own.

 

[LovingtheCoast]

Adam,

Good to hear your update.

I am scheduled to start Humira tomorrow. The nurse comes by tomorrow afternoon to help me with my loading doses, then, I theoretically will be taking Humira until it stops working. This has been a long time coming...

It has taken me 9 months to finally be at peace with this decision. I dedicated myself to every alternative approach, working very closely with my ND whom I adore. Working with her has changed my life: I feel better than ever! I sleep like a baby, have "semi" regular eliminations, have more energy, a much happier disposition, and even things like my nails are long and strong.

That said, my Crohn's is still beyond my control. Despite my best efforts, and a very careful strict diet, I still have set-backs that keep me home from work for days, cancelling social plans, curled up in terrible pain and sometimes nausea/vomiting, D and C. I feel like I hit the reset button each time and it really hurts physically, mentally, and emotionally.

As such, I am going to keep working with my ND, and eating mostly paleo. But I am also going to start Humira. I didn't want to start it until I was finally at peace with the decision - remember, what you think matters. If you are not comfortable with it, don't start it until you are. The right mindset is key. Healthcare is totally patient-driven, so if you would like another colonoscopy, ask for it, nevermind what your GI says!!

Take your time with the decision - don't rush it and don't do it to appease others. It's a major commitment, so think it through carefully. It's your life, your health and your body. I admire how hard you've worked through it all. You must have tremendous grit, strength and support!!

Believe me, I WISH I could heal myself without any meds, but I have come to grips with the fact that I need some additional assistance. Hopefully, not forever.

Good luck, and keep up posted.
Steph

 

[hugh]

HFirst and foremost, I went strict strict strict diet over the last month or so. I think I've had 2 days total where I cheated, but only because I was out of town. Other than that, I've been rock solid. Meats, fruits, veggies, nuts + seeds. I had some SCD legal cheese a couple of times too. The reason I went so strict is because I got some bad news:

Adam, Glad you went 100%,
90/10 might be fine for most people but not us.....

My GI says a few things:
1- I'm the poster boy for what NOT to do when I have crohns. I didn't go on any medication and I tried to treat it through diet.
2- I need to go on Humira.
3- The CT scan wasn't the best indicator of what is happening down there, so he wants me to go for an MRI.

Yet here I sit, with an abscess, that is spontaneously draining and potentially healing itself. Any why are my guts feeling fantastic?

So here I sit. Scheduled to go on Humira for a disease that I'm not even sure is present anymore. I have an MRI scheduled for December 31st too to determine what is in my butt, but by the time Dec 31st rolls around, I can't fathom ANYTHING being there. I don't think I can go back to my doc and refuse the Humira again without feeling like a total idiot or him disowning me. I'd actually like to request a colonoscopy, but I'm sure he would scoff at that too, since I just had one around February, which showed active disease.

Now, first and foremost, my opinion isn't worth a damb, but if you are feeling 'fantastic' then Dec 31 isn't a long way away..... Your call.

It's your arse (literally) so demand a colonoscopy and tell him that you will take humira if you need to based on the results of the scope?????

But remember 90/10 =fail

I'd agree with your doc (sort of) – trying to treat it with diet is ineffective -unless you commit 100%, but I think you get that now...

Paleo isn't as low carb as Wolff/Cordain ect. recommend. Paleo carbs are ok if tollerated.

Whether I go on humira or not (I think I "have to", just to appease my loved ones and tackle this from both sides), what KILLS me is that I don't think I'm ever going to "know" I'm definitely going to stick to the Paleo/SCD stuff because my guts are showing the results, but I'm not sure what to do at this juncture.
What do you guys think? Request a colonoscopy? Start on the drugs even though they may not be necessary? Looking forward to your responses! Thanks so much!

-Adam

Once again, I don't know squat, and it's you decision, but don't do it because you think other people think you are stupid.

Good Luck

 

[JohnnyRottenAppleseed]

Hey guys,

It's been exactly 4 months since I last posted, and I wanted to give a solid unbiased update on my condition, as it might help some of you along the way, and I'm hoping to grab some suggestions!

First and foremost, I went strict strict strict diet over the last month or so. I think I've had 2 days total where I cheated, but only because I was out of town. Other than that, I've been rock solid. Meats, fruits, veggies, nuts + seeds. I had some SCD legal cheese a couple of times too. The reason I went so strict is because I got some bad news:

I started feeling a "hardness" in my left butt cheek about 6 weeks ago. I had never had a hemorrhoid before, so I kind of assumed it was that. The hardness wasn't a lump, but more of a "wall". It extended from the inside of my left butt cheek, around the top of my crack (these are technical terms, by the way) and over to my right butt cheek. By the time I noticed it on my right butt cheek a couple of weeks later, I figured I should see a doctor. Also, it burned SOOOO bad sometimes when i went to the bathroom. Also it hurt to sit.. really badly.

Anyways, the doctor says: It's an abscess and I need to go into the hospital to get it removed. Day surgery. no big deal. I took the next day off work, waited for 8 hours in the hospital, only to be told that i'm being put on antibiotics and I should see my GI and come back into the hospital if it gets worse.

Well, it turns out my GI couldn't see me for like 3 weeks, and after 3 days it felt like it was getting worse, so I went back to the hospital. This time, they did a CT scan and gave me the news: Perianal crohns. It wasn't an abscess at all, there was no collection of fluid. But essentially, my crohns has spread to my ass (again, "ass" is the technical term).

Naturally, I was pretty devastated. Not only was my crohn's back, but it was progressing. They gave me another 2 weeks of antibiotics and told me this: The antibiotics won't help get rid of the crohn's, but it's preventative, just in case an abscess forms. That part is important.

So, I start taking even more antibiotics. Cipro and flagyl, 2x daily. I also go strict strict SCD + paleo. Really only eating foods that are approved on BOTH lists. I'm also on 100 million probiotics to counteract the antibiotics.

Day 8 or so after starting the antibiotics and day 4 of being strict paleo: I go through my usual withdrawals. Cravings, exhaustion and those kinds of things.

Day 10 of antibiotics and day 6 of paleo: All of a sudden, my bump on my RIGHT side feels like it's shrinking. Is it the antibiotics? That seems weird considering what the doctor said, plus, why would it take 10 days to start working? I stick with both.. the antibiotics and the diet and I finally get my GI appointment.

My GI says a few things:
1- I'm the poster boy for what NOT to do when I have crohns. I didn't go on any medication and I tried to treat it through diet.
2- I need to go on Humira.
3- The CT scan wasn't the best indicator of what is happening down there, so he wants me to go for an MRI.

Now, I actually genuinely like my doctor, but I left that room feeling like garbage. I don't regret trying to fix myself through diet, I think it was a worthwhile venture, but in the end, I feel like he's right and I need to finally go on drugs.

Flash forward to 4 days ago. I feel umm a bit "wet" in my butt. I go to the washroom, and I'm leaking. I'm leaking a clear fluid through the inside of my butt cheek. The lumps that had appeared all those weeks ago are draining like a popped zit (sorry for the gross detail!).

I haven't stopped "leaking". I'm going to the bathroom every hour or so, just to drain this thing, but here's the kicker: there are no more bumps. There is no more wall of hardness. The draining has effectively drained all the gross clear fluid out of me, and I sit back, thinking about my tummy itself, and I realize... I haven't had a stomach ache, crohn's symptoms or ANY foul smelling gas in months. I've been so focused on my anal problems that I hadn't really thought about my intestines. But I'm actually totally fine. My bowel movements are still loose, but that could be the byproduct of 5 surgeries.

So I contact my doctor via email. I ask him: What is happening with the leakage? Is it a fistula? Or healing, like a zit?

His response is that it was obviously an abscess, and has now formed a fistula and is draining.

Here's my problem with that answer: While I don't deny that it's probably a draining abscess NOW, The CT SCAN said it wasn't an abscess. The CT scan there was no fluid at all. I was also told that the antibiotics wouldn't help the situation, but would prevent an abscess from forming. Yet here I sit, with an abscess, that is spontaneously draining and potentially healing itself. Any why are my guts feeling fantastic?

So the question is: Is the diet actually working? Or are the antibiotics shrinking an abscess that actually was there the whole time? If so, why did they take so long to kick in? I thought antibiotics take only a few days to work. Maybe things were THAT bad??

So here I sit. Scheduled to go on Humira for a disease that I'm not even sure is present anymore. I have an MRI scheduled for December 31st too to determine what is in my butt, but by the time Dec 31st rolls around, I can't fathom ANYTHING being there. I don't think I can go back to my doc and refuse the Humira again without feeling like a total idiot or him disowning me. I'd actually like to request a colonoscopy, but I'm sure he would scoff at that too, since I just had one around February, which showed active disease.

Whether I go on humira or not (I think I "have to", just to appease my loved ones and tackle this from both sides), what KILLS me is that I don't think I'm ever going to "know" I'm definitely going to stick to the Paleo/SCD stuff because my guts are showing the results, but I'm not sure what to do at this juncture.

What do you guys think? Request a colonoscopy? Start on the drugs even though they may not be necessary? Looking forward to your responses! Thanks so much!

-Adam

If you are symptom free then hold off on Humira. Get a colonoscopy and a 2nd opinion. Why take a drug that can kill or maim you if you aren't sick anymore? Think about it.

 

[acemagic]

You guys are so amazing. THANK YOU so much for the responses. It's abundantly clear that there are varying views on the subject.

JohnnyO: The Humira is supposedly going to fix the abscess/fistula that I have, says the doc. I hear where you're coming from about the risks though - hence the post. I'm petrified too. I did ask my doc what the odds were and he told me that the increased risk of cancer is actually half of what it is to die on the operating table. So I actually have twice as much chance dying during my next operation than I do taking the Humira. He also said that out of 500 patients he has treated, not a single one has had a "severe" reaction in any form, and that includes, any cancers, sepsis, or bad infections.

LovingTheCoast: You have no idea what a relief it was to read your post. You're exactly in the same boat as I am. As much as I hate that you're going through it too, it's so good to know that someone else has tried the ND approach and is still going the Humira route. Thank you sooo much for posting!

I have no doubt that the Paleo solution is doing some good, but Kiny may be right. It might be naive of me to just put all my eggs in one basket for the sake of "knowing" that the diet did or did not work for me. If I take a guess and I'm wrong, I could lose my whole intestine, which I'd like to save for a little while longer. Doctors are in it to help patients. If more patients died on these drugs that it helped, we wouldn't be taking them.....right? lol

-Adam

 

[wild_one353]

since you are so ambitious, how bout trying a fecal transplant?
glad you are going on meds tho, i have been doing the med free approach since day 1, which is 4 years now. nothing is more dangerous then that, i wish i had utilized the available meds, but i have done ok this way too. i will be doing a fecal transplant soon.

http://www.crohnsforum.com/showthread.php?t=52400

 

[mccindy]

I think what you really need to consider is this: Crohn's doesn't "go away". It flares up, and gets better, and can go into remission. It sounds like your dietary changes caused the Crohn's in your gut to go into remission, which is good, and a likely indication that you are doing the right thing with your diet. The new flare of Crohn's in your anal region shows that it has continued to spread, and eventually caused the abscess and fistula you are experiencing now. This would indicate that the dietary changes haven't completely put all your Crohn's into remission, and this would be why your GI wants you to start the Humira. There are times when you need to accept the inevitable, and you will probably discover that it's the combination of medication and diet control that gives you the relief you've been hoping for.
It sounds like you have a GI who is on your side and understanding, so be grateful for that and keep working with him to get yourself as under control as possible.

 

[LaLaNapa]

Hi Adam:

Just wanted to send support your way. Unfortunately, I understand what you are going through. I've been Paleo (98% at least!) for year and a half and on LDN since Spring 2013. And my one year follow up colonoscopy just last week shows progressive disease: inflammation active again in my colon and my TI narrowing further from ongoing inflammation. It's just so frustrating as I feel fine. I know my MD wants me to step up to Entocort followed by 6MP. But my ND wants to put me back on the protocol I was on last year (before my prior colonoscopy which had showed improvement - inactive disease in the colon at least). I wish I hadn't stopped that, even if it was a ton of supplements every day. But I am seriously thinking about Entocort. (And please...any "pro-med guerrillas" hold off on comments.) But I already battle depression and anxiety and even she thinks it will be risky for me due to side affects of...yeah, depression and anxiety.

So anyway, I guess we at least learned to fight for our health and our wishes. There is such as a thing as a patient's right of self-determination. Health should be in our control...sadly with the state of the human race, it seems it's not really in anyone's control: doctors or patients.

Best wishes to you!

 

[JohnnyRottenAppleseed]

I don't see why doctors or patients think an abscess and a flare are the same thing. Are you taking any immunsuppressants? My abscesses finally went away after I went off 6mp. Most people and Doctors will tell you to take Humira or the next great pharmaceutical drug. Just ask yourself why you have to sign all of those legal documents to limit the doctors liability when taking this toxic drug? Just remember, it is YOUR decision and YOU have to live and die with your choices. I decided I would live and die without that drug. I would rather die of natural causes than from a life threatening infection. Of course your dr will sing the praises of Humira! It costs $30,000 a year!!!! $$$$$$$$$$$$

 

[JohnnyRottenAppleseed]

You guys are so amazing. THANK YOU so much for the responses. It's abundantly clear that there are varying views on the subject.

JohnnyO: The Humira is supposedly going to fix the abscess/fistula that I have, says the doc. I hear where you're coming from about the risks though - hence the post. I'm petrified too. I did ask my doc what the odds were and he told me that the increased risk of cancer is actually half of what it is to die on the operating table. So I actually have twice as much chance dying during my next operation than I do taking the Humira. He also said that out of 500 patients he has treated, not a single one has had a "severe" reaction in any form, and that includes, any cancers, sepsis, or bad infections.

LovingTheCoast: You have no idea what a relief it was to read your post. You're exactly in the same boat as I am. As much as I hate that you're going through it too, it's so good to know that someone else has tried the ND approach and is still going the Humira route. Thank you sooo much for posting!

I have no doubt that the Paleo solution is doing some good, but Kiny may be right. It might be naive of me to just put all my eggs in one basket for the sake of "knowing" that the diet did or did not work for me. If I take a guess and I'm wrong, I could lose my whole intestine, which I'd like to save for a little while longer. Doctors are in it to help patients. If more patients died on these drugs that it helped, we wouldn't be taking them.....right? lol

-Adam

You assume the FDA and Big Pharma care about you instead of profits. Ask the 35,000+ people who were killed by properly prescribed and FDA approved VIOXX.

 

[acemagic]

You assume the FDA and Big Pharma care about you instead of profits. Ask the 35,000+ people who were killed by properly prescribed and FDA approved VIOXX.

Hey Johnny,

Oh, no no. I definitely don't have any illusions about that. I know for a fact that they're in it for the profits. What I mean to say is that Humira has been around for 10 years now and if it didn't work at all, or killed more patients than it helped, we would have heard about it by now, either through the media or through the forums or Internet.

Yes I have heard PLENTY about the terrible side effects and they need to list those side effects or risk getting sued and losing everything, but if it actually wasn't helping people at all, we would have heard first hand accounts of people suffering on it. For those that are on it that have posted here, I've heard mostly good stuff.

-Adam

 

[JohnnyRottenAppleseed]

I would only take it if I was facing imminent Surgury or death. My GI wanted to put me on it in 2010. I'm med free 3 years later. Of course that could change. He was just very insistent I start right away. He was wrong and I was right. My body. My choice. Choose wisely is all I'm saying. And as far as Doctors go, I had a surgeon tell me one of his patients almost died from complications. By the sound of it he probably wishes he did. Several operations and months in hospital he survived. He told me that if it was dealing with draining abscesses or Humira he would suffer with the abscesses. I did and they went away after a year of going on and off cipro and flagyl. Just my experience. I'm not giving you medical advice just my experiences.

 

[JohnnyRottenAppleseed]

Also you are in canada. Have you tried medical cannabis? It works in disease and symptoms.

 

[mccindy]

JohnnyO, I have to say that, although I am not a "pro-med guerilla", I am a bit put off by your adamant anti-pharmaceutical rants. While it is true that some people do well without medications, it is also true that medications often provide relief for many others. To advise someone to absolutely refuse medications against the advice of his doctor is offensive. There are many different medications available, and sometimes it takes a few different meds to find the right ones for certain people. Other people can get by with dietary changes. Unless you are a medical expert and very familiar with each individual's diagnosis and conditions, you should never advise to extremes. And telling people they will die or wish they were dead if they use the medications prescribed by their doctors is also something you should think very hard about, and then only say to yourself, not to them. This forum is not about scaremongering and hard lines, it's about support and advice.

 

[acemagic]

I would only take it if I was facing imminent Surgury or death. My GI wanted to put me on it in 2010. I'm med free 3 years later. Of course that could change. He was just very insistent I start right away. He was wrong and I was right. My body. My choice. Choose wisely is all I'm saying. And as far as Doctors go, I had a surgeon tell me one of his patients almost died from complications. By the sound of it he probably wishes he did. Several operations and months in hospital he survived. He told me that if it was dealing with draining abscesses or Humira he would suffer with the abscesses. I did and they went away after a year of going on and off cipro and flagyl. Just my experience. I'm not giving you medical advice just my experiences.

Also you are in canada. Have you tried medical cannabis? It works in disease and symptoms.

You dr, like mine, is full of crap. You are not supposed to take Humira if you have infections. I changed my mind at the 11th hour when the Humira was already shipped. I know I would be dead if I took that crap as I was getting terrible abscesses while on 6mp. I've been off 6mp for two years and guess what? No more abscesses! The commercial even says tell your doctor of you suffer from infections. It is contraindicated!

The thing is, I don't want to wait until I'm close to death to start. I've been through 5 surgeries in the last 15 years. My crohn's is fairly "aggressive" even though I don't feel any pain. The fact is that if this is perianal crohn's, then the disease has progressed despite being on a fairly strict dietary regime. I totally agree with you. Go the dietary route. Heck, this entire thread is based around that concept. But considering that the disease appears to be progressing despite my best efforts, I think it probably makes sense to attack it from every angle. I'm still hesitant though - don't get me wrong and I will still stay true to the diet, even when on the Humira.

As far as medical marijuana goes, I do take the Rick Simpson oil about once every two weeks. I don't like the high feeling I get, and the marijuana that doesnt get you high, but has a high level of "healing" properties is impossible to get up here. It's a particular strain that I can't seem to find. So the oil is the next best thing. I was taking small amounts every day for a while there, but still not getting restful sleep because I kept getting high. I can try reintroducing it now though, in even smaller doses.

6mp was a nightmare for me too. I lasted 4 days on it and it paralyzed my legs with bruises. However, Remicade did wonders for me. 1 dose and I was completely in remission for a full year, with no pains at all. Humira is closer to remicade in composition than it is to 6MP. It might actually work for me.

 

[Ozboz]

Yeah getting the right strain of MMJ is very important for it too work on lowering inflamation
I'm using cannatonic at the moment which is to be a strain that's really good for crohn's but still not seeing the results I want but I do have fairly aggressive crohn's and an infection so maybe when the infection goes the MMJ will work better

 

[JohnnyRottenAppleseed]

I didn't realize you had operations already. It sounds like you know what you are doing. I wish you the best either way! I know what it's like desperately trying everything to cure yourself while the specialists practically mock you for trying anything besides their mainstream suggestions.

 

[Crohnie1023]

Perinatal disease is difficult to treat period. As a nurse it sounds to me that you indeed had an abscess and when put on antibiotics it created a fistula in order to drain. Fistula do not usually just go away even with biologics...most require that your crohns be under control and then surgically they r repaired. Have u tried steroid enemas ? You need to treat it locally also. To know the extent of your perinatal/ Crohn's disease u need an MRI enterography at a major medical center who knows how to read and interpret them. Many local hospitals can't even recognize fistula on MRI...you need expertly trained radiologists. When peri anal disease becomes extensive...the recommendation is usually a temporary or permanent ileostomy depending on what has been removed prior. A friend of mine has 6 perinatal fistulas and this has been the recommendation of Cleavland clinic, the university of Chicago and the university of michigan. I don't say this to scare you...I say that it is time you got aggressive and dealt with experts only within your surrounding community. Biologics ( although I don't take them myself ) may give you your life back along with continuing your diet.

 

[JohnnyRottenAppleseed]

Mine went away without biologics or surgery. Also biologics are contraindicated if you have an infection. Abscesses are infections.

 

[acemagic]

I have an MRI scheduled for December 31st. In the meantime, I'm still taking antibiotics and the fistula hasn't stopped draining. It's pretty gross. I'm going back to the bathroom every half hour to absorb the fluid. I'm hoping like crazy that it will resolve on it's own and by the time Dec 31st rolls around, there's nothing to see, but from what I've read, it's more likely that I'll need the Anti-TNF to do it. My GI says that the Humira will likely help with the closing of the fistula, so Crohnie123: you and my GI disagree there.

Crohnie: No I haven't tried steroid enemas. You're saying I should be doing those to assist with the healing?

JohnnyO: You're right about that too. Abscessed are infections and I shouldnt start the Humira if I have one. I'll email my doctor about that, since I think the Humira folks are lining me up for my first dose in a couple of weeks.

I'll keep you guys posted. Thanks again!

-Adam

 

[mccindy]

While biologics can increase the risk of infection due to their immunosuppressive tendencies, they are not contraindicated in the presence of infection. Often the primary condition they are administered for is of higher priority than an infection, which can be treated independently.
Once an abscess starts to drain, it often will resolve on its own, without requiring the use of an antibiotic, but sometimes they are necessary.
Each person's body is different and reacts to medications, diets and infections differently. What works for one person might not work for someone else.

 

[michelle222]

Hi AceMagic,

I hope that the diet goes well. I am currently going off of 6MP and instead of doing Remicade, which my doctor recomends, I am trying to control my disease through diet. I meet with an MD and clinical nutritionist at Columbia the first week in January to see how to adjust my diet to control this disease. He has had Crohn's since he was 19 and, after spending his life trying to figure out how to control his Crohns through diet, has developed a diet and probiotic formula that has kept him in remission and flare free for something like 50 years. A friend of mine with UC has also done this diet and has been in remission since (albeit only 3 years). So anyway, I completely understand where you're coming from.

That being said, I am continuing to stick with my GI doctor as well and monitor my Crohn's along the way with blood tests and colonoscopies every 6-12 months. While my doctor doesn't agree with my decision, we compromised that I would try the diet for 6 months and if I am not doing better (and continuing to do better into the future) I will discuss Remicade again. I think it's really important if you are going this route to make sure you are getting checked out frequently by doctors.

Anyway, I hope things go well and please keep us updated.

 

[serrickson]

My son, 10 years old, has been on Paleo for 6 months. Zero doctor support, but for medication. The result? Well, his calprotectin dropped 1200 points in a month (to normal). He GAINED 15lbs. Iron etc., now normal. THEN the calprotectin dropped again to BELOW 20, as of two weeks ago. He's on Azathioprine and MTX, diagnosed over 3 years ago when he was 6, while suffering perianal disease. Two years ago his calprotectin was 3000 (while on AZA and steriods). YES--3000!!!! His doctor is utterly shocked, although he doesn't know our son is 100% Paleo, but does know I toy with his diet. Even if I told him he won't believe me, he insists diet has nothing to do with Crohn's. Paleo is HARD, a nightmare for me as a stay at home dad to prepare and research, even worse for a 4th grader to follow. But it works, at least for the past 6 months. I'm convinced MILK and GLUTEN are the root of all evils, at least for our son. Nevertheless, the diet has been worth it!! But one HAS to be 100%!

 

[VeganOstomy]

Paleo is the way to go. Google "American Gut". They are finding that paleo diet favors a gut flora that is anti inflammatory.

That's not what the current scientific research says. Not only do paleo diets increase inflammation (with average crp levels being more than double of that vs a vegetarian) but high meat diets do not favor or gut bacteria.

Ever wonder why almost all the paleo gurus out there sell lots of supplements, take laxatives and drink a lot of coffee?

 

[acemagic]

That's not what the current scientific research says. Not only do paleo diets increase inflammation (with average crp levels being more than double of that vs a vegetarian) but high meat diets do not favor or gut bacteria.

Ever wonder why almost all the paleo gurus out there sell lots of supplements, take laxatives and drink a lot of coffee?

Do you have a source for that? That's the very first I've heard that.

-Adam

 

[VeganOstomy]

Do you have a source for that? That's the very first I've heard that.

-Adam

I have several years worth of research on the subject. It would take some time to gather my sources, but you may find some quick data be searching "vegan gut flora" or something like that. You'll find studies which show the composition of the gut bacteria, but I find it more valuable to look at research that shows the byproduct of those bacteria. We know that certain bacteria can offer immune boosting benefits through the byproducts they produce, while other bacteria produce far more damaging byproducts.

For the high inflammation levels in paleo dieters, I found data from studies published by several "paleo gurus" then compared their results with studies on vegans or vegetarians. There was a lot of work involved in cross checking the data, but it was quite clear: even the research that was suppose to support lower inflammation in paleo followers produced poor results when compared with plant based diets.

There's a lot of misinformation on the paleo websites. I've challenged them many times only to be banned and blocked from their site. You'll also find that many of the studies those sites mention in favor of high animal product diets are actually funded by groups such as the Cattlemen Board or the Egg board...

 

[SoIhaveUC]

I have tried extreme low carb diets and spent a lot of money on various natural programs. When doing the diet my stomach felt better and my weight at the time seemed to balance, it also helped with joint pain; but saying that, my disease in located in the rectum, and the diet did nothing for that. I have always had bleeding there, and it has not gone away even with the diet. I used to rave about the diets, but now I realise that it is so individual, and I have met some people who say they are in complete remission. However, I have realised it does not work for everyone and now I am at a stage in my UC life where I have to say, "you got to find out what works for you." I have to say my rectum does not like me whatever I do. Nikimazur, I am in the same position as you are where I am now starting to include grains, and I am really not sure if I want to, but it might be the best thing for me. I had my first baked potato the other night in 3 years. No kidding

 

[DGH]

Great read. I saw that you might think Grains are a part of what inflames it.

This might be a dumb question, but is spaghetti a grain? I've been eating a ton of spaghetti the past week due to trying to gain weight and working out, and thus far my crohns has been seeming to be getting better. I haven't added any new meds (yet). Ill let you know if I continue eating a lot of grains if anything changes.

As a person with crohns for almost 20 years now with 2 re-sect surgeries, but now having daily symptoms almost completely gone for several years with no medications, specifically wheat [spaghetti}, and wheat products, are extremely inflammatory. Not just for people with crohns, but people in general. For actual clinical studies, check out pubmed .com This site is extremely supported by the medical profession and is more educational than anything else you will be exposed to in my opinion. I do most of my research there and devised my own aproach from what I learned there to almost eliminate daily symptoms..Good luck to you....DGH

 

[hugh]

I have tried extreme low carb diets and spent a lot of money on various natural programs. When doing the diet my stomach felt better and my weight at the time seemed to balance, it also helped with joint pain; but saying that, my disease in located in the rectum, and the diet did nothing for that. I have always had bleeding there, and it has not gone away even with the diet. I used to rave about the diets, but now I realise that it is so individual, and I have met some people who say they are in complete remission. However, I have realised it does not work for everyone and now I am at a stage in my UC life where I have to say, "you got to find out what works for you." I have to say my rectum does not like me whatever I do. Nikimazur, I am in the same position as you are where I am now starting to include grains, and I am really not sure if I want to, but it might be the best thing for me. I had my first baked potato the other night in 3 years. No kidding

Paleo doesn't have to be low carb, and it definitely doesn't have to be very low carb.
I know most peoples intro to paleo (mine included - SCD) is very low carb, but 'paleo dogma' has softened alot in the last 30 years with people coming to realise that our evolution from forest dwelling apes (food -mainly plant but with a large helping of insects) to human grassland dwellers we would have relied on starchy tubers to survive.
Paleo ranges from full on carnivore to raw vegan, and if you can find your own 'sweet spot', the point that works for you physically and ethically then that's great.
We are all different, and do better on different diets, but this range can be accommodated within paleo.

There is no place for shitloads of sugar, vegetable oil, gluten (especially as we have it today), and chemical crap in a healthy diet.

It's unfortunate that some people try to pretend that the debate is between vegetarian and meat eaters when it isn't.
One can have a healthy vegetarian diet or an unhealthy vegetarian diet.
One can have a healthy omnivorous diet or an unhealthy one
One can even have an unhealthy paleo diet.

Bring back the carbs but try paleo carbs first and see if that's enough.
Try a strict medium carb paleo and see if the bleeding stops?
I'm a great believer in pro-biotic foods, i eat dairy if i want to and make great cakes with almond flour, coconut flour and tapioca (casava) flour.
Since becoming aware of Paul Jaminet's work, i've even added in white rice.

So enjoy the potato, it's paleo (but not SCD), and enjoy carbs,

It would be nice if the vegan liberation army put up a bit of science and a bit less waffle.
Googling wheat and gut flora would be more illuminating,

There's a lot of misinformation on the paleo websites. I've challenged them many times only to be banned and blocked from their site. You'll also find that many of the studies those sites mention in favor of high animal product diets are actually funded by groups such as the Cattlemen Board or the Egg board...

Yeah, and the vegans are funded by monsanto (who's growing all that tofu?).
We can all throw accusations and misinformation around, but it's not helpful

 

[VeganOstomy]

Yeah, and the vegans are funded by monsanto (who's growing all that tofu?).
We can all throw accusations and misinformation around, but it's not helpful

That's an ignorant statement, considering most gmo's are grown for livestock and tofu isn't a requirement for living off a plant-based diet.

 

[nogutsnoglory]

Hugh, that really is uncalled for. Unlike the meat industry which is heavily involved in lobbying and flawed research to promote their products the vegan community doesn't have a major manufacturer on its side. Sure soy manufacturers will tout the benefits of soy but the animal industry is unified and powerful. Most vegans likely care not only about animal welfare but also the health of their bodies and the environment and I'm sure many are consciously trying to avoid GMO's.

 

[mccindy]

Personally, I thought it was a little funny - as tofu is made, not grown. There are always going to be industries who want to push through their own agenda, and it's up to us as the consumers to decide what we want to put into our bodies. Vegan or omnivore, we all have the right to decide what we're going to eat, and others shouldn't try to push their own agenda. Just give some info, and let people decide for themselves.


GMOs affect meat and plant food alike.

 

[hugh]

That's an ignorant statement, considering most gmo's are grown for livestock and tofu isn't a requirement for living off a plant-based diet.

Soy, wheat, sugar, corn,
- industrial agriculture is as damaging (if not moreso) than industrial meat production, Growing grain on the vast destructive scale makes Caged Animal Feeding Operations possible, not the other way around.
It's the grain industry that is profiting from CAFO's as much as the meat industry, and they are on the same side.

Hugh, that really is uncalled for. Unlike the meat industry which is heavily involved in lobbying and flawed research to promote their products the vegan community doesn't have a major manufacturer on its side.

I'm against CAFO's and the meat industry.
It's a nasty poisonous and inhumane way to produce meat, and produces an inferior product
Likewise i'm against commercial agriculture,
It's a nasty poisonous and inhumane way to produce vegetable based foods, and produces an inferior product.
Likewise i'm against commercial food production,
It's a nasty poisonous and inhumane way to produce 'food-like products', and produces an inferior product.

The paleo community also doesn't have a major manufacturer on their side, but both have large industries that will align themselves to self promote as much as is profitable, and both sides will use whatever 'science' available to promote their own cause.

Personally, I thought it was a little funny - as tofu is made, not grown. There are always going to be industries who want to push through their own agenda, and it's up to us as the consumers to decide what we want to put into our bodies. Vegan or omnivore, we all have the right to decide what we're going to eat, and others shouldn't try to push their own agenda. Just give some info, and let people decide for themselves.

GMOs affect meat and plant food alike.

I'm glad someone did .

It's getting a bit off topic but that's where we wandered.....
…....great debate, covers nutrition and ethics, 1hour 44min.
Don't Eat Anything With A Face
http://intelligencesquaredus.org/iq2-tv/item/1022-dont-eat-anything-with-a-face
I haven't got to the end yet, but both sides are against CAFO and concerned with animal welfare and food quality

Hi AceMagic,

I hope that the diet goes well. I........
….....Anyway, I hope things go well and please keep us updated.

+1, hope you are travelling well.....

 

[VeganOstomy]

Soy, wheat, sugar, corn,
- industrial agriculture is as damaging (if not moreso) than industrial meat production

While i agree that our current farming methods are not ideal, can you explain what those foods or how they are grown hasto do with the statement that "vegans are funded by monsanto"? I had no idea that eating corn or wheat automatically makes you vegan.

Soy - most is grown for livestock.
Wheat - what about it? Vegan exclusive?
Sugar - vegan exclusive?
Corn - most is grown for livestock.

Your attack on people who simply want to end unnecessary violence is baseless.

My comment was an observation that the paleo world - especially the gurus like Sisson or Wolf, base their knowledge (and attacks on plant-based diets) on misinformation, myth and meat-industy sponsored studies. Those studies are often ripped apart for having poor methodology or simply skewing the results to form a favorable conclusion.

 

[hugh]

While i agree that our current farming methods are not ideal, can you explain what those foods or how they are grown hasto do with the statement that "vegans are funded by monsanto"? I had no idea that eating corn or wheat automatically makes you vegan.

Hmmmmmmm, my comment was......
“Yeah, and the vegans are funded by monsanto (who's growing all that tofu?).
We can all throw accusations and misinformation around, but it's not helpful “

The second line acknowledges it to be 'accusation and misinformation' , perhaps a bit subtle but I thought most people would pick up on it.
Obviously not....
….but to clarify, it was a poke at your cheap shot. Sorry if it confused you.

Soy - most is grown for livestock.
Wheat - what about it? Vegan exclusive?
Sugar - vegan exclusive?
Corn - most is grown for livestock.

I've never tried to say eating corn, soy, wheat or sugar makes you a vegan, that would be silly, and trying to imply that I did is a bit purile.
I'm simple trying to bring the discussion back to reality, and away from the misdirection that you employ.
In this case, foods that help or hinder health of people with intestinal issues, and corn, wheat, sugar, and GMO,s are top of the list
I'm not spouting an ideology, i'm suggesting that people try a healthy diet and see if it suits them.
You seem to have the strange (but very common) idea that 'science' you agree with is correct and 'science' you disagree with is conspiracy.

My comment was an observation that the paleo world - especially the gurus like Sisson or Wolf, base their knowledge (and attacks on plant-based diets) on misinformation, myth and meat-industy sponsored studies. Those studies are often ripped apart for having poor methodology or simply skewing the results to form a favorable conclusion.

That's hilarious, I was just thinking about how much vegan/vegetarian based 'science that i've seen demolished by people that I find to be believable, but then I can admit that my belief does not automatically make me right.

A diet that is all plants is not a plant-based diet, it is a plant diet.

I'm happy to disagree with you and I think we've taken enough space on this post, Perhaps start
another post for those who are interested?

 

[VeganOstomy]

I'm happy to disagree with you and I think we've taken enough space on this post, Perhaps start
another post for those who are interested?

No thanks, I see where this is going and I'm not interested in continuing.

These disagreements are never settled on forums - I'll let the researchers and scientists sort it out, not the supplement salesmen or the Cattlemen Beef Board.

 

[Bent128919]

Hi! I'm lex. New to this forum. I'm 20 years and for The past month I have been having some major issues with constipation. My stomach feels horrible enemas barely work and more problems keep arising. I noticed a bump in the back of my throat, right above my uvula . It's is red and so is my uvula. My throat is sore as well. It looks as though it could be an ulcer. I'm not sure if it is an ulcer or something more/less serious, as I know ulcers can be a result of Crohn's disease. I'm not sure if the two are linked or not. But I am really concerned about my throat and the fact that I have been having bowel issues for The past month. I do have some blood when I wipe, but I didn't know if that was from straining or not. I've also noticed mucus in the stool. Here is a picture of mouth , do u ever get these sores with your Crohn's? ( ignore all my fillings , sorry! Haha) does any of this sound familiar at All? I heard constipation was not common with Crohn's

IMG_1923.jpeg

 

[mccindy]

Bent128919, You should probably have that looked at - a large red sore bump like that could be the beginning of an infection and should be treated. My niece had one (she has no GI issues) and ended up with an enormous abscess in her throat that had to be drained and removed.
As far as constipation, I know several people who have been diagnosed with Crohn's who have constipation as a symptom. I myself have been diagnosed with Crohn's, and then had that diagnosis taken away, and been told it's IBS, but I've always had constipation as a symptom. The blood and mucus are not normal. You should get the throat checked out right away, and then get a referral to see a GI about the blood/mucus.

 

[mccindy]

I'm happy to disagree with you and I think we've taken enough space on this post, Perhaps start
another post for those who are interested?

IF you do decide to start another post, I'd be happy to attend. I find it interesting to have such discussions, even when opinions differ. I like to hear everyone's side of the argument and see where things end up.

 

[Bent128919]

Mccindy, thanks a lot! I'm going to post the same thread to the general forum so I can get more opinions too. I'm stuck at school in the snow so cant get to a doctor just yet

 

[Togashi Deckard]

For years I could eat all grains with seemingly no problem, though I was never in complete remission... My stool and bowel movements never became completely normal.

However, since my flare-up in November, I've discovered wheat gives me way more mucous and makes me bleed. Extremely disappointing, since wheat is the main ingredient in most of my favorite foods.

The Maker's Diet seems to agree with your original post... There are healthier forms of grains, but according to the author basically non-paleo things (and dairy in a lot of forms, I believe) are more dangerous for sufferers.

(He claims to have put his Crohn's into remission with the diet.)

 

[Ozboz]

I got told by several GI's that diet doesn't affect crohn's or it's symptoms but how can diet in a digestive disorder not affect it I have removed several items from my diet and feel better in a few days doctors huh who do ya trust

 

[Togashi Deckard]

Doctors have no motivation to encourage people to seek solutions unless those solutions are prescribed or surgical. Those are the things that get doctors paid. (Doctors get treated to all kinds of trips and stuff by pharmaceutical companies... Doctors know who butters their bread.)

 

[mindiemonster]

My doctor told me that diet is important, but what works (diet-wise) for one person won't work for another and that you have to figure it out yourself. That said, what works best for me is a whole foods diet that doesn't have any milk or wheat or corn. I don't know if that diet has a fancy, sellable name, but it's pretty simple. When I'm feeling well I'm not eating anything that's processed - but I still keep my diet balanced. I still have carbs, but they're not from white rice or white potatoes or white flour. I have desert - but I make it myself from whole grains and raw sugar. My energy is up, when I'm eating right, my bowel movements are as low as they've ever gotten (about six to eight a day - largely due to the large amount of scar tissue).

 

[serrickson]

All I know is that Paleo gave our 10 year old son his life back after 4 years of hell.

Four years of trying all sorts of diets and medications.

Four years of watching my kid lose a part of his childhood.

He STOOD the entire first half of first grade due to fistula. All day, standing, because of perianal disease hell. Just the tip of the iceberg.

He was to be admitted last year after losing 15% of his body weight in a few weeks because the doctor hadn't a clue as to what was wrong with him. This was the straw that made us try Paleo.

Research? I got research. We're on year two now of Paleo. Still growing, 3/4" as of yesterday as compared to a few months ago. Still on MTX and AZA, but his labs have had that new car smell of perfection for over a year now.

He can run.

He can actually get up in the morning.

He can eat when normal people should eat.

He can laugh.

He can socialize, have sleepovers, participate.

He can smile just for the hell of it. Before Paleo, he use to cry for the hell of it.

Maybe it lasts another week, a month, or a year? All I know is that Paleo, when done right, like we try to do, gives way more than it takes away. So I'm an advocate for it, I don't care what other people do, but people need to know it's an option that works in many instances. Ask my son, he'll tell you. But then again, ask yourself: what 9 year old eats like this, for as long as this? One who feels great, that's who.

I guess to me it means a lot because everything is multiplied 1000x with a kid. If I was diagnosed with Crohn's today, especially after all this with our son, it would be no big thing. I've already had the gift of childhood. To see a kid change like this, it's all the research I need.

 

[DaisyB]

How long is it taking people to notice a change in health after moving to a Paleo diet? I've been Paleo for about five weeks now and just been stuck on another course of Pred. I'm worried the new diet isn't working but not sure how long it should take to see results?

 

[hugh]

How long is it taking people to notice a change in health after moving to a Paleo diet? I've been Paleo for about five weeks now and just been stuck on another course of Pred. I'm worried the new diet isn't working but not sure how long it should take to see results?

That will depend on what you are eating and how sick you are,
Paleo covers alot of food and many may be ones you don't tolerate well.

Some people just 'go paleo' and it seems to work for them and others have more going on (intolerances, allergies, disbiosis, abscesses, etc) and would probably be better served by a more structured introduction.

SCD,GAPS and Paleo A/I protocol all have an introductory phase that restricts foods to a bare minimum (bone broth, boiled chicken, pureed carrots, etc) and reintroduces 'allowed/legal' foods slowly to see if they are tolerated and builds up to a varied diet of tolerated 'allowed' foods.

If you just start a 'paleo diet' you may be eating foods that you react badly to (eggs are a VERY common trigger)

This is the paleo diet i would recommend you try,
the period of limiting food is about 30 days(?) and hopefully by then you know which paleo foods you should avoid.
Paleo A/I protocol...
"The first dietary recommendation for those with autoimmune disease is to adhere to a strict paleo diet with no cheating. To be clear, this means: no grains, no legumes, no dairy, no refined sugars, no modern vegetable oils, no processed food chemicals. While other people may be able to enjoy the occasional bowl of rice or corn chips or even ice cream, if you suffer from an autoimmune condition you are not one of these people. Gluten should be banned for life. Grains and legumes should never be consumed. Dairy of any kind (even grass-fed ghee which can still have trace lactose and dairy proteins!) should be avoided initially. This may be true for the rest of your life but some people may be able to reintroduce many foods after their diseases are in remission."
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

SCD and GAPS intro diets could be used instead as there are more websites giving step by step instructions.....

Just to be very clear, the intro diets are
1/ to allow some healing to occur (simple easy to digest foods)
2/ staggered introduction of foods to identify problem foods

The SCD Intro Diet
http://pecanbread.com/f/how/introdiet.html
The Stages of SCD
http://pecanbread.com/p/how/stages.html

 

[DaisyB]

That will depend on what you are eating and how sick you are,
Paleo covers alot of food and many may be ones you don't tolerate well.

Some people just 'go paleo' and it seems to work for them and others have more going on (intolerances, allergies, disbiosis, abscesses, etc) and would probably be better served by a more structured introduction.

SCD,GAPS and Paleo A/I protocol all have an introductory phase that restricts foods to a bare minimum (bone broth, boiled chicken, pureed carrots, etc) and reintroduces 'allowed/legal' foods slowly to see if they are tolerated and builds up to a varied diet of tolerated 'allowed' foods.

If you just start a 'paleo diet' you may be eating foods that you react badly to (eggs are a VERY common trigger)

This is the paleo diet i would recommend you try,
the period of limiting food is about 30 days(?) and hopefully by then you know which paleo foods you should avoid.
Paleo A/I protocol...
"The first dietary recommendation for those with autoimmune disease is to adhere to a strict paleo diet with no cheating. To be clear, this means: no grains, no legumes, no dairy, no refined sugars, no modern vegetable oils, no processed food chemicals. While other people may be able to enjoy the occasional bowl of rice or corn chips or even ice cream, if you suffer from an autoimmune condition you are not one of these people. Gluten should be banned for life. Grains and legumes should never be consumed. Dairy of any kind (even grass-fed ghee which can still have trace lactose and dairy proteins!) should be avoided initially. This may be true for the rest of your life but some people may be able to reintroduce many foods after their diseases are in remission."
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

SCD and GAPS intro diets could be used instead as there are more websites giving step by step instructions.....

Just to be very clear, the intro diets are
1/ to allow some healing to occur (simple easy to digest foods)
2/ staggered introduction of foods to identify problem foods

The SCD Intro Diet
http://pecanbread.com/f/how/introdiet.html
The Stages of SCD
http://pecanbread.com/p/how/stages.html

Thanks so much for this Hugh, it's really helpful. I've had a brief look through the links but I will have a more detailed look when I have some more time.

For the past five weeks I've been eating meat, fish, fruit and veg (and eggs). Guess I may have to scale back further. It's difficult too being on meds because that makes it harder to see what impact the diet is having, IMO. I find that when I've started out on any meds I'll have an improvement for a few weeks/months and then gradually start to get worse again. Not too sure what that means... I'm still new to all this and it's quite overwhelming.

 

[lenny]

I am doing the SCD for my son, but we have never been able to pinpoint any specific trouble foods and although he was technically in remission for a year, he has always been slightly symptomatic and now has an FCP of 500, so not in remission anymore.

He suffers from mild (by this board's standards) constipation, occasionally has pain while going or is super tired afterwards. He's also very underweight.

The diet worked perfectly for a close relative, so I had hope, but I am discouraged at this point. He has been eating all organic, grass fed, wild caught, homemade everything and his dr thinks he'd be worse off if he hadn't been on the diet, but how do we know that?

 

[hugh]

The diet worked perfectly for a close relative, so I had hope, but I am discouraged at this point. He has been eating all organic, grass fed, wild caught, homemade everything and his dr thinks he'd be worse off if he hadn't been on the diet, but how do we know that?

i can understand how frustrating that would be, i had improvements from SCD but switched to paleo because it made more sense and, thankfully, it worked better for me.
One option is to go back to the intro and see if you can identify any foods causing problems,
Another is to try tweaking, adding probiotics, removing potential trouble foods,
And while doing either, looking at other issues (sleep, meds, stress, etc).

The first thing to check is whether there is something in his current diet that shouldn't be there (some 'natural additive, might be eggs, could be too much dried fruit, maybe nuts...), and secondly, how closely he is following the diet.
Check how he went through the intro to work out which of the allowed foods they shouldn't be eating.
Cheating once a month (according to some SCD sites) is all it takes to keep you sick.....

Just because there are SCD treats and nut breads doesn't mean that someone on the SCD diet can eat them.........
Just because Eggs and Nuts are paleo doesn't mean someone on the paleo diet should be eating them.

I cannot overstate the importance of probiotic foods,
I am wary of yoghurt because even the SCD yoghurt gave me diarrhoea, but there are many dairy free probiotic foods.
Water kefir is amazing, and with a secondary fermentation it tastes sooooo good.
Sauerkraut is easy, cabbage and salt underwater

Eat food that is alive, there is so much linking gut bacteria to this disease
NOTE: introduce probiotics slowly, there can be reactions and unpleasantness

 

[lenny]

Thank you for responding.

I make all of his food and he has NEVER cheated. Fear of surgery is the motivator.

He's a bit picky. Eats a lot of yogurt, at least a lg bowl every day with honey sweetened cooked fruit. Also has a fruit smoothie everyday. His nuts are always blended into the smoothie. He tries to stay away from raw veggies because he thinks they cause trouble, so no lettuce, cabbage or sauerkraut etc. He mostly eats salmon, chicken, chicken soup, meat patties, cheese and a variety of blended, vegetable soups. He seems to feel the same, no matter what he eats, which is not terrible, but it isn't good.

 

[hugh]

I know this won't be popular but that's alot of sugar (dried fruit and honey) .
If this disease is a result of or related to disbiosis then reducing sugar for a while might be important. Nuts and dairy may not be a good idea. Veggies are nutritious but should be well cooked. Replacing normal foods with Scd imitations is not enough. As one website said "if you haven't done the intro you haven't done Scd".

Just my opinion and I only have two small posts to go on but sugar. Food in not supposed to be sweet. We just get addicted to it

One site (of quite a few) dealing with what to do when SCD isn't working.....

Here’s the breakdown of each of the four horsemen listed in order of most problematic:

Dairy: The protein Casein (Don’t worry – replace yogurt with dairy free probiotics like these)
Egg: The protein Albumin (Egg and dairy free SCD is possible – even for breakfast, find out how here)
Nuts: Nut and nut flour proteins (Find other recipes here)
Excessive fruit/honey: Way too much sugar feeds bacteria (Read about fructose malabsorption here)
Links are on original website
http://scdlifestyle.com/2011/03/what-to-do-when-the-scd-diet-isnt-working/

 

[Poppysocks]

I've done strict paleo.

I've eaten nothing but lean meats, and cooked/canned veggies. I didn't even eat fruit. I ate no grains, rice, or dairy. Nor did I eat nuts. I actually still pretty much eat like this.

And although improvements were seen. I DID end up getting sick again and having to go back on medication (Remicade). I've been on Remicade for probably around 14 years. Up to around December of last year I was getting remicades at 4x the maximum doseage every 4 weeks. I broke out in Shingles at the end of the year. This kind of gives you an indication of the severity of my disease. Ever since then I've changed my diet trying to get off remicade. But I just can't get off it completely it seems. With the change in diet though, I've been able to spread my Remicades out twice as long as before. It doesn't make me 100% though. I don't even know what 100% feels like. It pretty much just keeps the pain away. The last one I ended up going 11 weeks, but I was in pretty bad shape towards the end (blood, pain in rectum, unformed stools, weight loss, etc).

I think you're definitely right that diet can attenuate the symptoms of this disease, and possibly for some people with mild cases, they can even get off all medications. But thats not the case for me.

 

[hugh]

He's a bit picky. Eats a lot of yogurt, at least a lg bowl every day with honey sweetened cooked fruit. Also has a fruit smoothie everyday. His nuts are always blended into the smoothie.

this podcast @14:30 covers the 4 main problems (eggs, nuts, dairy, fruit/carbs) with SCD/paleo foods.
Might be worth a look to help tweak the diet......
http://blog.paleohacks.com/jordan-reasoner-gut-health/