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Crohn's Disease Forum » General IBD Discussion » Is it possible to avoid meds in Crohn's maintenance?


01-09-2015, 10:22 PM   #1
GBG
 
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Location: Boston, Massachusetts
Is it possible to avoid meds in Crohn's maintenance?

My 18-year-old son was just diagnosed with ileocecal and diffuse Crohn's involvement. He's doing great on elemental diet and Entocort, following the IBD remission diet, but his gastroenterologist is pushing to start maintenance meds. I've heard of people living medication free but it's all third hand. If you or a family member have managed your Crohn's without traditional medications, I would loveto hear how you've done this. Thanks very much in advance.
01-09-2015, 10:46 PM   #2
nogutsnoglory
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It's not adviseable for anyone with moderate to severe disease. Some mild cases can get away with it until they get worse.
01-09-2015, 11:09 PM   #3
my little penguin
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Please check out the parents of Ibd section
http://www.crohnsforum.com/forumdisplay.php?f=49

It has lots of facts and btdt parents

Basically the younger the age of dx ( 18 is still young to be dx ) the more severe the disease course.
Kids disease tends to spread and change from inflammatory to stricturing /fistulizing over a 10 year period after dx.
EEN is great but once food is introduced the inflammation does return
Same with entocort .

Most maintence meds are scary when the docs tell you about them
I was ready to kick and scream and keep my then 7 year old on EEN for life to avoid them.
Maintence meds take time to build up to be helpful.
6-mp, Aza and Imuran takes 3-6 months so he would have to stay in steriods until then.
Mtx takes 8 weeks less risk for boys to take this one.
Biologics ( remicade Humira ...)
These take 6 weeks remicade
3-5 months for Humira

Biologics were the scariest to read on paper but have had the least side effects for Ds and have given him normal again
6-mp went to his liver and wasn't enough for him
Mtx wasn't enough as a monotherapy either

Things to realize
By the number death from all other causes is much higher for an 18

For those under 14
Odds of death
By car 1 in 250
By drowning 1 in 1000
T cell lymphoma if you are a random person on the street no Ibd 2 in 10000
If you take combo biologic plus immunosuppressant 6 in 10000.

Risks taken everyday are so much higher
Taking meds saves as much of the bowel as possible for as long as possible since 70 years with crohns is a long time to create scar tissue and damage due to under treated or untreated crohns .


Good luck
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01-09-2015, 11:56 PM   #4
Optimistic
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GBG, diet has been working for my teenaged son the past few months. He was diagnosed this summer with indeterminate IBD. It was an ugly time with a two month flare before a full melt down in the hospital for a week. Finally his stomach issues made sense.

He started prednisone in the hospital. After a few months, when he started to feel better, he did a few weeks of EEN and has been on about 70% percent brutally rigid SCD and 30% EN since then. I spend pretty much all of my spare time making food or reading this forum! I don't know what the future holds but he is doing great now. Great as in gaining weight back, zero symptoms and playing sports.

Is your son being treated at children's Boston or is he too old? We saw Drs there. You are in a great area if you must deal with this disease. uMass has also been doing some work on diet and IBD.

I hope your son continues to do well.
01-10-2015, 12:03 AM   #5
Lady Organic
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that is awesome Optimistic!
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-10-2015, 02:43 AM   #6
lenny
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I have a family member who was diagnosed with Crohn's 9 years ago and has remained in remission following the SCD, no meds. Unfortunately the diet did not work for our 18 year old son.
01-10-2015, 08:31 AM   #7
alex_chris
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Hey there GBG.

I can only tell you my own personal story, as I do not know anyone myself who has Crohn's and has been able to keep in remission without any problems and not taking any maintenance meds.

Just one question first, how long has he been on Entocort? As you probably know, steroids are among the meds you should be most careful with and should be tapered off as soon as it is possible.

Ok, so here my story. Got diagnosed aged 18 close to age 19, for the next 3 years I really had quite some problems, but was too stubborn to do much about it and my GI back then wasn't a Crohn's specialist, so didn't understand that real treatment was needed. I was taking Pentasa only for 3 years, which for Crohn's patients is little or not at all better than a placebo. Well, anyway, what happened is that the active Crohn's led to severe scaring in my lower small intestine and I had surgery to remove several stenosis.

Before the surgery, I had switched to a Crohn's specialized GI, who told me what type of long term strategy I should take to get Crohn's under control. He was actually the one who pushed for the surgery, while the surgeon was cautious... but well, my GI was absolutely right, as I was close to having blockages. He started me on azathioprine before the surgery and said this is going to be a long term med for at least 4-5 years, if it works for me. This was in early 2003 when biologics only started to be used widespread. Anyway, between 2003 and 2008 I took azathioprine and in retrospect, it worked somewhat, but I wouldn't say I was in complete remission. I got severe problems with anaemia in 2007 and in 2008 stopped azathioprine because my (then new) GI then thought my anaemia might be caused by aza... which it wasn't, but that is another story.

Anyway, so despite prior surgery and being a Crohn's patient who could back then somewhat manage the disease through diet and sport and stress relief, but generally wasn't in complete remission, I was med free for 2 years. And I have to admit, compared to 2003 to 2008, the period from 2008 to 2010 wasn't that much different, I was "sort of" in remission, but not really, actually gradually things got pretty bad as in before surgery bad. In 2010, I got a wake up call in that my anaemia was really, really bad and I started to have completely swollen feet and my weight had dropped to underweight status.

I went up to azathioprine again after an Entorcort stint, and tried to change how I managed my Crohn's. Things seemed to work much better the next month, but I was still not able to get my anaemia under control, which in turn impacted how I felt generally. So again, I wouldn't call 2010 to 2012 in remission despite azathioprine. In 2012, I got another wake up call, because I collapsed on the street from anaemia on the street. Had to have 4 blood transfusion and another Entocort treatment and then weekly iron transfusions for 6 weeks.

So finally, after 13 years of Crohn's, in early 2012 I got my act together, started working out and jogging 3 times a week, using supplemental liquid nutrition consistently, using azathioprine as prescribed (2 times a day, taking it in the morning and evening, never forget any dosage), used a mix of iron supplements that started to work and also started to take other supplements such as vit D3, vit B6 and B12, zinc, magnesium etc., yoga, stress relief, more positive thinking and being really strict with food I know would get me into trouble. I got my bodyweight up through sport and the supplements and finally after many years, my blood work stabilised again. For 2 years I was for the first time in real remission (I did not even think that existed) with principally no problems at all, no diarrhea, no discomfort, little to no gas etc.

And thus, after 2 years of good remission, I talked with my (Again new, due to moving to another city) GI and we agreed that I would again try whether I could keep in good remission without azathioprine. Phased out aza in early March 2014. The first 2 months, I did not see any difference, but I got into trouble in June 2014. Until now, I don't really know whether it was really caused by not continuing aza. When I say "trouble", I just mean some diarrhea, nothing really bad. But my GI said, let's try aza for at least another year, just to not end a really good remission period. Did that, got back on aza and have felt great since July again.

Currently, I am planning to phase out aza once again this summer and go meds free. Well, maybe the third time is the charm .

To sum up, first hopefully this post wasn't too long to read, but second, my advice is that if your son was just diagnosed, has been on Entocort and is now faced what to do next, my strong recommendation is to start maintenance meds. If he can figure out to live with Crohn's and stay in remission for years on maintenance meds, then, while hard, he could still try to get off them. But I sincerely doubt that anyone with more than just really mild Crohn's (I was by the way, originally told I have mild Crohn's, which was then changed to "severe" a few years later and now I am sort of categorised as "moderate", ... which in my few means no one has any idea what mild, severe and moderate means) can manage to stay in remission without meds for years initially after the diagnosis.
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Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
01-10-2015, 09:51 AM   #8
GBG
 
Join Date: Jan 2015
Location: Boston, Massachusetts
Many thanks to everyone who replied. My son is highly motivated and disciplined, so Is on a nutritional, supplement, stress reduction, and Exercise program. He was just diagnosed at the end of December and has only been on the enteral diet and Entocort, vitamin C, B, E, probiotics , multivitamin, L glutamine for two weeks. he just started an aloe product, Serovera, a few days ago.
He sees a Boston gastroenterologist and I would love names of any Boston, Worcester, gastroenterologist who embrace the role of diet and supplements. Anywhere in New England works, If such a gastroenterologist does not exist in eastern Massachusetts.
Please reply if you know of any strongly nutritionally oriented gastroenterologists, or of peopleWho have followed strict non-Pharmacologic approaches and have been able to stay in remission drug free.
Again, I so appreciate hearing from others.
01-10-2015, 09:56 AM   #9
my little penguin
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Please let your Gi know about the Aloe
Aloe is not recommended for Ibd patients as it can cause gut irritation.

Good luck
01-10-2015, 09:57 AM   #10
my little penguin
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01-10-2015, 12:22 PM   #11
hawkeye
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I was on maintenance medication (5-ASA and Imuran) for 23 years. The medication got and kept me in remission for a good part of those 23 years.

The inflammation started to progress again and I had surgery in February. I have been off medication since the surgery and a scope in November showed no visible Crohn's so I am staying off medication (on the advice of my GI) if and when I need to go back on it.
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Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
01-10-2015, 05:10 PM   #12
D Bergy
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I tried LDN, Imuran and Lialda and a lot of different supplements. None of them would keep me in remission for good. I flared while on Imuran and finally put together my own treatment program using a method I had been treating my wife's Lyme disease & coinfections with for many years.

I had actually been researching pathogens found in people with Crohn's ever since I was diagnosed a few years ago. By testing the treatment on each one of the pathogens, as it is very specific and selective, I determined by the elimination of symptoms that mine was likely caused by the MAP bacteria, H-Pylori, and some strain of E-Coli.

I still had some symptoms, and I later found out I missed a quite common pathogen, which was Mycoplasma pneumonia. Once I reduced that one, the remainder of my symptoms went away. It took me out of my flare I had while on Imuran so I stopped using it. The flare was gone in a couple days.

I use what is commonly called Rife frequency treatments. I use specific frequencies to target specific pathogens. As I mentioned earlier, I have many years of experience using the method, and that has gave me a leg up on treating the disease this way. I did not have the big learning curve, but still had to find the bugs that caused my flares.

It is no cure, as I do have to treat myself occasionally, especially for the Mycoplasma which is more difficult to kill that the rest of the pathogens. I suppose it could be all luck also, but its hard to explain some of the dramatic results with coincidence. It not my first rodeo either, I have tried and failed many times, with various methods, before I had success.

I think this is the best way available today to reduce the pathogens involved with Crohn's. I may change my mind next week if I go into a flare, but I am as normal as any person without Crohn's presently. It will take years to prove this out, so given that, I do not recommend using this method as your main treatment. I think it is best used as an additional treatment with conventional meds. Of course if you have no conventional options left, I think it is well worth a try.

I wont get involved with all the details of how to go about this, as it is rather extensive. It would take me a couple of weeks to post a detailed "how to". It requires top notch equipment, and a decent plan of attack. Pretty easy treatment though once you get set up.

Good luck to you, whatever route you go with.

Dan
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01-10-2015, 05:42 PM   #13
worriedboy
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IF you decide to go med-free, make sure to have regular scopes to make sure you are in remission. One thing you do NOT want is scar tissue and/or other inflammation damage.

I believe that in Crohns, there is some precentage who are "lucky" to be able and manage without drugs. They usually do have flareups, but those are not very hard, not coming too often, etc. And, even if not in total remission, their disease tend not to leave too much scarring, i.e. it "progresses" slow enough so that they have the choice to go without drugs.

From the stories I know of, those people usually manage their Crohns mainly through diet. The interesting thing is that each one of them is doind totallly siffernt one, from SCD to allergies-oriented, and they all are sure that their way is THE way... what a funny world.


Good luck.
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