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Choosing No MEDS.

Anyone choose to not take meds, following resection ? What about naturopath. ? Bio feedback? Diet? Cranial sacral ? My son (20) does not want meds. To be honest neither do I. They might help now, but after extensive research, they will do more harm than good in the long run... Right now. No D and only symptoms are gas and bloating and colonoscopy shows inflammation and stricture 6 months following resection. New to crohns now just 16 months since diagnosed.
Does anyone else have have luck without meds with same Level of symptoms. ?
Meds mask the problem. I agree that they are necessary when it is controlling your life. My son goes to school full time and works part time.

If anyone has a good reference of a D.O. Or naturopath in the RI or MA area please let me know. Thanks for you time.
 

nogutsnoglory

Moderator
I tried that approach and it forced me into several surgeries. 6 months post op he has inflammation and a stricture. That is a rapid progression.

Meds don't mask the problem. They target the underlying inflammation that is the cause of the symptoms. Meds arent a cure but they help manage the disease.

I hope you will reconsider.
 

DJW

Forum Monitor
Hi and welcome. Sorry about your sons DX.

Please be aware that no symptoms or minor symptoms does not mean things are fine. This simmeringiinflammation can cause serious complications down the road including strictures, fistulas, and an increased risk for cancer. Crohns can go from 'mild' to severe quickly.

I'd also suggest looking into diet and lifestyle to control symptoms.

I wish him well in whatever he chooses. Just keep all the risks in mind.
Sending you both my support.
 
I can only speak from my personal experience. If he already has inflammation (any way to quantify/qualify?) and "stricture", that is hard to assess the situation. All I can say is that I distrust both the allopathic and naturopathic sides of the wellness equation. However, naturopathic diets/supplements can be more effective, in my biased opinion, in the long run. This can be slightly (depending on the individual) tedious, though. If your son has a mature and vigilant outlook on the matter, I think it is the way to go.

After a surprise 10cm, or so, resection and appendectomy 10 years ago (no resections/hospitalization other than check ups and joint pain once, to no avail, since), I kind of aired on the side of caution for over a year, taking azathioprine and pentasa--to no discernible benefit. From there, I tried going on a whole food-ish diet. Eliminating all preservatives and gmos and sugars (synthetic or otherwise, except stevia/honey/and cane sparingly if at all) and transfats. Just eating real, whole foods is a shift from most people's lifestyles ($/time/culinary skills). I have mostly relied on alternating quality probiotics (two different kinds a week--meaning one kind every other day, like once or twice a day-- is probably good, usually on empty stomach before bed and in morning for a while before eating) and 3 grams of enteric coated actual omega 3 fish oil daily (like, say, NOW ultra omega) and 5,000 iu vitamin D3 daily and occasionally sublingual B12 (methycobalamin) and 2 caps of Black Cumin Seed oil from Life Extension brand per morning daily well before food. Other than that, I've taken LDN as a precautionary measure (cost/benefit analysis seems alright in my opinion) for the past few years. I have not drank tap water, other than a few times per year--literally--for the past 8 years. I've always relied on reverse osmosis or a combination of table top filters for my --literally--100+ ounces of water a day, not including juices, etc..

From there, I can only recommend eating only foods that he can tolerate. That is, eating whatever allows him to be asymptomatic (no diarrhea, cramps, joint pain, whatever) most of the time. Sometimes this may be going on stretches where only a few foods can be consumed, one at a time, until restoring the digestive system to a more healthy stasis (anti-inflammatory/probiotics/prebiotics/antioxidants). There is no clear cut path to tread down this route. Any honest person would tell you the same for the allopathic route which is also based on symptom management--though, while completely denying and ignoring any dietary factors on individual symptoms.

My largest complaint with doctors is their lack of inquiry and scientific proof. I mean, some may take whatever blood tests/calprotectin/scopes/pill camera once ever and determine a lifetime of "treatment" from there, without really ever demonstrably verifying the midterm/longterm effects of whatever battery of pharmaceutical potions poured into you, from diagnosis to the 5 or 10 year mark. That is unless you have problems, then they just cut you up and place you back on the same or similar drugs. There is a limit to this method. Some of these drugs have very serious side effects and may cost thousands of dollars a month.

For some the takeaway may be to try these things in conjunction with pharmaceuticals. I do not know what will work for most people, it is largely an individual cast of symptoms/intolerances/triggers/locus of inflammation which requires a whole lifestyle shift. If you feel like reading a somewhat coherent thread on my outlook, having almost 10 years of experience with this dis-ease, ferret out my thread in the "Success Stories" section of the site titled "MY Supps for MY Dis-Ease". Best of luck.
 

afidz

Super Moderator
IBD is a very advanced, very complicated disease. It can do a lot of damage with little to no signs at all, and in a lot of cases the way people find out that there is severe damage is when they are in the E.R. screaming in pain heading to the operating room.
Yes, there are a lot of things to consider when choosing your treatment path. Without treatment you are at a higher risk for colon cancer and disease progression is likely to happen a lot quicker. I personally don't think naturopathy is effective in managing the disease, and I don't think that diet change alone is effective enough on its own.
The meds aren't simply controlling inflammation. They are stopping or slowing your immune system from trying to kill your digestive tract. How can food or other various holistic approaches do that?
If your concerned about the side effects of the meds, Keep in mind that if something came up during the drug trial, it had to be reported. You are far more likely to get colon cancer from non treatment than you are to get lymphoma from Humira. Please reconsider, ask to have a long consultation with your doctor, or several doctors to ask questions and really evaluate your options. Utilize this forum and the people in it. Ask add many questions as you need to. It's really not safe long teem to stay off meds.
 
Medications and surgery have helped me more than I ever thought possible. I've tried no end of "alternative", "natural" treatments, and none of them have been of any help whatsoever. Diet has helped a bit, but the only diet that helps me is a low-fibre diet, which is recommended by conventional medicine.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome to the community.

I absolutely understand the desire of some people to take the no traditional medication route. For those with an advanced understanding of Crohn's disease, how to properly monitor their disease state and progress (or lack thereof) who also have a strong game plan, then I conservatively support them.

On the other side of the coin, if you've already had a resection and you once again have active inflammation, in my opinion, you need to be on traditional medication in conjunction with whatever else you want to try.

Are there potential long term side effects of medications? Unfortunately yes, though they are rare. But I assure you, short bowel syndrome and everything that comes with it is a terrible thing.
 
I tried the no meds approach for 3 1/2 years after my diagnosis (basically was only on Pentasa which is pretty much "no meds" for Crohn's). This led to surgery.

If someone had a bowel resection and has been known to have issues before, I very much recommend the use of long term meds. Only AFTER several years of long-term remission should a path of no meds be considered and taken (Something I have tried and will continue to try).
 
I haven't been on any meds for around 18 years and then after 10 years or so of occasional (partial) obstructions needed a resection due to several strictures.
To hopefully prevent me having another op we're now in the process of finding a maintenance medicine that works for me. I expect I'll be on that indefinitely.

I wouldn't dare to risk going without meds if your son is already showing signs of structuring so soon after a resection, just my opinion.
 
My son is 18 and went straight to remicade. Within the first loading dose his symptoms disappeared. He remained asymptomatic for close to two years, though he had an inability to gain weight(an obvious symptom). Each test showed simmering inflammation and though he had no symptoms it also showed progression. At the end he was on high dose remicade and methotrexate.

He just recently had a small bowel resection, a month before his 18th birthday. The surgeon and GI said that even though the MRE showed mild enhancement the bowel removed during surgery was filled with deep ulcerations and fissures with narrowing that was sure to obstruct.

He will return to meds and we hope now anti tnf blockers will be efficacious. If not we will move to other meds. With his disease being severe and his first surgery coming so young I much more prefer to accept the small risks of meds with hopefully great benefits than I would the reality of damage that can occur while he is even asymptomatic in presentation.
 
I had my resection done 8 weeks ago and all I'm on is metronidazole till I see my gi at end of feb I feel pretty good touch wood
 
My son was diagnosed at age 11 with weight loss (about 2 lbs a year for 2 years at a time when he should have been gaining), and he had stopped growing.

He has been on meds for the last three years and has gained 80lbs and grown 12 inches. So meds have definitely made him healthier.

I hope you reconsider.
 
That's not 100% true. My Mum has UC and has been med free for 30+ years, she has never had surgery.
I've been med free for 2 years, on the agreement of and under the guidance of my gastro and I'm doing great.
 
that's not 100% true for everyone but for the majority.

meds free under the guidance of your gastro is alright, as long as someone is monitoring your bowel ;)
 
Maybe no meds = increased risk of surgery? Though surgery is not always a bad thing, in some situations it makes sense to choose surgery over meds.
 
We have a family member who went on the SCD 9 years ago, after being diagnosed with Crohn's and she has been in remission, without any meds, ever since. My son tried the diet with Pentasa and it failed. He just tried it again with MTX and it is failing again.
 
I agree with Matrix. I went off meds in 2011. By the end of 2012 I was in the emergency room, and having two feet of small intestines removed in mid 2013.

even if doc recommends no meds - i'd probably find another doctor. best of luck - wishing remissions for all
 

my little penguin

Moderator
Staff member
I equate no meds to standing in the middle of the highway .
Some will be ok since there is variation in Ibd .
Most however will eventually have damage.
Ibd can be silent -causing damage .
The younger the age at dx the more likely the disease will have a severe course.
The younger you are the more likely the disease will change and grow. Children tend to change location and type over a 10 year span unlike adults . They also go from inflammatory to other types as well.
Look at pictures of pyoderma gangrenosum ( basically crohns of the skin).
If you son's outsides looked like his insides but wasn't "bothering " him would you want him to go without meds.
I think Ibd is harder since you really can't see the ulcers /scar tissue and damage .
Just read the potentially bad side effects.

Other things to consider
Does your child take any risks ...
I would assume he does just to improve QOL

For younger kids ( numbers go through the roof for teenagers )
Risk of dying by
Car 1 in 250
Drowning 1 in 1000
T cell lymphoma without Ibd or drugs 2 in 10000

With biologics and immunosuppresants 6 in 10000.

So yes increased risk but extremely low compared to what risks are taken day in and day out without a second thought

Good luck
 
Good on you for bringing this up in the forum.I recommend you view my My Story. I SPENT A LOT OF TIME ON NO MEDS - DIDN'T WORK OUT SO WELL. :ywow:

I was 13 when diagnosed, 15 when i lost my entire large bowel, and now i'm 32.
between 14 & about 17 i was taking pentasa. But i stopped because the tablets weren't dissolving and i had little faith in them. There was no other crohns maintenance medication available at the time. It wasn't cos i was anti meds or anything, it was because they offered me nothing.

Between 17 and 31 i was on no meds. As far as i knew i was really well. Also i wasn't seeing any gastro doctors so had no idea about the medical developments.

2 years ago, while on no meds i started noticing minor symptoms, gas first, and then occasional gripes if eating exciting foods. I finally got the attention of a gastro team who got me into an MRI and did a scope. I had Multifocal inflammation throughout my small intestine.

Surgery was not an option because I'd have nothing or very little left if they removed it.

My only option was to try the new meds and try an reduce inflammation. After a grueling 12 months we got there using Humira, 6MP, Hydrocortizone, Infliximab. If they hadn't worked I probably wouldnt be alive.

Unfortunately the worst of the inflammation, although healed,left me with strictures at the last 25cm of bowel. Without active disease it was deemed safe to remove that section. I'm currently recovering.

Medicine technology has made massive developments in the last 15 years. The Crohns really snuck up on me.
Going through this with a very young family is awful. Be proactive and keep on top of the disease.

I noticed you mentioned research. Remember that years and years of experience, drug trials, thousands of patients etc has lead to the medical practices of today. Trust the professionals. Researching the net only gives you a radical biased view, especially with regards to medicine, vaccines etc.

Best wishes to your family
 
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I have a question can Crohn's still be active even thow u in now pain I had surgery 2 months ago to remove part of my bowel so far I have been really well but my surgan said it is still active that was after the op would no pain and going regular mean I'm in remission? I'm waiting for my surgeon to have a follow up appointment he taking his sweet time too :)
 
antibiotics may do harm,There is new science to back this up. but most likely not the drugs, generally speaking the drugs will not do much harm at all, not compared to what the disease itself can do if not properly suppressed. some side effects may occur, mots side effects will be minor.

you should do everything to help your son, do not limit your options. Check out breaking the vicious cycle for the most effective diet for GI diseases. i have done little to no meds and only diet alterations with some luck for 6 years, i can supress some symptoms, but its never enough to supress it all, diet will not cure you othewise id me cured by now. there are a few that started with the same opinoins as you are starting with right now, and you are not completely wrong by any means, diet alterations can reduce some symtoms, but it may not be enough. most likely it will not be enough to maintain normal functioning for work school etc. drugs plus diet is the best!!
 
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