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Crohn's Disease Forum » General IBD Discussion » This is how I'm going to put my Crohn's into remission


 
07-24-2013, 08:23 AM   #301
acemagic
 
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Location: Calgary, AB, Canada
Hey Jennifer,

Wow... really picking my story apart huh? lol I feel like I'm under the microscope.

I'm not blaming the doctors. I know they're sharing what they've learned. But i've also read time and time again that the role of diet doesn't get taught very heavily in medical school. It doesn't hurt to listen to all schools of thought and try to find out what works.

Regarding your questions, I should clarify because you're right. I sometimes make guesstimates and generalize about my past. Here are the exact answers:

Your first comment: I've had 4 SURGERIES> 3 resections, 1 ostomy reversal surgery.

Your second comment: I'm 32 now. When I'm writing quickly, I just think back to the approximate age I was, when I was diagnosed (which was around 20- for easy math). In reality I was 17 or 18... Can't remember which exactly. Hence the difference.

You're third comment: I have been on more than 4 meds, but I can't remember all the names. I could go to my doctor and ask for a full list, but I've just spoken about the specific ones I can recall. However, in recent discussions with my doctor, he had told me that I've been on everything available except Humira. Some other names I can recall off the top of my head are Methotrexate and Infliximab. If you're interested and if memory serves me correctly, I was constantly nauseous on Methotrexate and Infliximab gave me the same symptoms as the 6MP did.... I think. It's honestly difficult to recall why i was pulled off.

And your final comment: My doctor had to pull me off Remicade because by intestines were too narrow. Any more Remicade and there was a chance that they would fuse together.

Hope that helps clear things up!

-Adam

Last edited by acemagic; 07-24-2013 at 09:24 AM.
07-24-2013, 05:25 PM   #302
Jennifer
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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.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-24-2013, 11:02 PM   #303
acemagic
 
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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
11-25-2013, 07:09 PM   #304
acemagic
 
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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
11-25-2013, 08:31 PM   #305
JohnnyRottenAppleseed
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Join Date: Oct 2011
Location: Colorado
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.
11-25-2013, 08:35 PM   #306
Ozboz
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I'm on falgyl now and I'm in horrible pain
11-25-2013, 08:36 PM   #307
JohnnyRottenAppleseed
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Paleo is the way to go. Google "American Gut". They are finding that paleo diet favors a gut flora that is anti inflammatory.
11-25-2013, 08:42 PM   #308
kiny
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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.

Last edited by kiny; 11-25-2013 at 09:00 PM.
11-25-2013, 09:01 PM   #309
LovingtheCoast
 
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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
11-25-2013, 10:32 PM   #310
hugh
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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
__________________
'Liberation can only be gained by practice, never by discussion'
SN Goenka
11-26-2013, 12:21 AM   #311
JohnnyRottenAppleseed
Senior Member
 
Join Date: Oct 2011
Location: Colorado
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.
11-26-2013, 12:38 AM   #312
acemagic
 
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Join Date: Feb 2012
Location: Calgary, AB, Canada
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
11-26-2013, 12:58 AM   #313
wildbill_52280
Senior Member
 
Join Date: Sep 2009
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
11-26-2013, 09:34 AM   #314
mccindy
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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.
__________________
Cindy

current diagnosis is undiagnosed (possible Celiac disease)

Colonoscopy done August 2013, no evidence of Crohn's seen, biopsies done and one polyp removed.
Polyp is precancerous adenoma

(Diagnosed with a diffuse astrocytoma (brain tumor) 5/31/13.
Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)
11-26-2013, 11:47 AM   #315
LaLaNapa
 
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Join Date: Jun 2012
Location: Yountville, California
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!
11-26-2013, 11:48 AM   #316
JohnnyRottenAppleseed
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Join Date: Oct 2011
Location: Colorado
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!!!! $$$$$$$$$$$$
11-26-2013, 11:52 AM   #317
JohnnyRottenAppleseed
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Join Date: Oct 2011
Location: Colorado
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.
11-26-2013, 12:06 PM   #318
acemagic
 
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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
11-26-2013, 12:16 PM   #319
JohnnyRottenAppleseed
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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.
11-26-2013, 12:18 PM   #320
JohnnyRottenAppleseed
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Also you are in canada. Have you tried medical cannabis? It works in disease and symptoms.
11-26-2013, 12:24 PM   #321
JohnnyRottenAppleseed
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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!
11-26-2013, 12:46 PM   #322
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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.
11-26-2013, 12:49 PM   #323
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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.
11-26-2013, 09:13 PM   #324
Ozboz
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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
11-26-2013, 10:19 PM   #325
JohnnyRottenAppleseed
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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.
11-27-2013, 12:56 PM   #326
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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.
11-27-2013, 01:06 PM   #327
JohnnyRottenAppleseed
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Mine went away without biologics or surgery. Also biologics are contraindicated if you have an infection. Abscesses are infections.
11-27-2013, 02:07 PM   #328
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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
11-27-2013, 02:09 PM   #329
mccindy
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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.
11-27-2013, 02:34 PM   #330
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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.
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