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Crohn's Disease Forum » General IBD Discussion » Refusing Crohn's treatment/surgery. Any Advice?


06-10-2017, 05:45 PM   #1
Someguy
 
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Refusing Crohn's treatment/surgery. Any Advice?

Hello all. I'm new here and was diagnosed with crohn's disease about 9 years ago (I am now 25 yrs old). I was lucky enough to not have any need for surgeries until this point but even if it was recommended (or life-saving) I would still refuse. I have a colonoscopy coming up and I'm a bit scared since I haven't seen a GI in years till I finally got hospitalized for a bowel obstruction 2 weeks ago. I am currently taking humira (and while it is not as bad as taking 5 pills a day [especially prednisone] like how it was when I was first diagnosed) it still leaves me feeling fatigued and has only left me with discomfort instead of pain.I will soon tell my doc that I'm going off the humira too. I am going to try cannabis oil (High CBD-low THC) to treat the inflammation and hopefully be lucky enough to go into full remission like some have. However, I do not plan on relying on just this.

With that said...Is there anyone here that also refuses medical treatment? are there any specific diets that would be best? What kind of activities should I be doing? Any other recommendations? Thanks

Worst comes to worst and none of this works I will just take some high- thc and die as painless as possible but I think it's best not to think that way.
06-10-2017, 05:56 PM   #2
ronroush7
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Welcome. I would not recommend going off of Humira. At the same time, I would suggest trying a food diary so you can know what foods upset your gut. You can also try a section on here called Diet, Fitness and Supplements. Wish you the best.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-10-2017, 06:45 PM   #3
cmack
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Welcome,

I agree with Ron, I wouldn't go off of Humira until you have given it a fair go at things and only with the doctors approval. It can really help some people. Diet can be very important to your success as well. I went from being a meat eater to a 95% vegetarian, it made a huge difference in my energy levels and decreased my pain. CBD is also a good thing for some people but I would only use it as a supplement. Try to think positive, things will likely get better if you stick to a proper medical, and diet regimen.


Wishing you well,

cmack
06-10-2017, 07:50 PM   #4
Someguy
 
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Thanks for the replies. To clarify some things I've been taking Humira for years now (I've been getting it prescribed by my general dr since I wasn't seeing a GI for a while) so I know that the best that Humira offers me is a reduction of pain to discomfort and fatigue. It sucks that I can't have my cake and eat it too when it comes to these medicines so I'm going to throw in the towel when it comes to the medicine route (my GI will still monitor me though). I will look into some vegan diets/fitness forums and take a more "alternative" approach.

Once again thank you for the replies.
06-10-2017, 08:06 PM   #5
ronroush7
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Glad that you will be monitored by your doctor.

06-10-2017, 08:13 PM   #6
Ozboz
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Some guy try humira in combination with MMJ it worked wonders for me use an indica at night time and you will see some good result's.

In saying that I too went off humira cause it gave me fatigue sometimes and I also needed it for my arthritis my disease is mainly perianal and parts of large intestine. I also did a paleo style diet at the time and saw amazing results with the humira paleo style diet and MMJ indica's mainly I also used cbd only oil from hemp but didn't get a good result.

I regret it badly now getting off the humira as I type this I'm sitting in hospital with a pick line in my arm getting ready for surgery I'm on TPN at the moment enternal nutrition as they call it I need my bowel out. But because I went off med's the disease was active and made my large intestine huge on the outside walls and it is now adhered to my small intestine also I have a fistula and an abscess which got cleared up with antibiotics. If humira is reducing your pain then stick too it then modify your diet as it will increase your energy level's like it did for me and try a indica MMj strain high in CBD but the pure CBD oil's are a waste of time as they are made from mostly industrial hemp and are not worth it in my opinion all it for my was increase my appetite. Please consider not going off your med's as that was the worst mistake I ever made with my crohn's.
06-10-2017, 08:46 PM   #7
ronroush7
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Something similar happened to me with Remicade.
06-10-2017, 08:55 PM   #8
cmack
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Some guy try humira in combination with MMJ it worked wonders for me use an indica at night time and you will see some good result's.

In saying that I too went off humira cause it gave me fatigue sometimes and I also needed it for my arthritis my disease is mainly perianal and parts of large intestine. I also did a paleo style diet at the time and saw amazing results with the humira paleo style diet and MMJ indica's mainly I also used cbd only oil from hemp but didn't get a good result.

I regret it badly now getting off the humira as I type this I'm sitting in hospital with a pick line in my arm getting ready for surgery I'm on TPN at the moment enternal nutrition as they call it I need my bowel out. But because I went off med's the disease was active and made my large intestine huge on the outside walls and it is now adhered to my small intestine also I have a fistula and an abscess which got cleared up with antibiotics. If humira is reducing your pain then stick too it then modify your diet as it will increase your energy level's like it did for me and try a indica MMj strain high in CBD but the pure CBD oil's are a waste of time as they are made from mostly industrial hemp and are not worth it in my opinion all it for my was increase my appetite. Please consider not going off your med's as that was the worst mistake I ever made with my crohn's.
This guy is for real! I hope you seriously consider what he says.
06-10-2017, 08:56 PM   #9
cmack
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All the best to you OZ. I know you are for real dude.
06-10-2017, 09:30 PM   #10
ronroush7
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Some guy try humira in combination with MMJ it worked wonders for me use an indica at night time and you will see some good result's.

In saying that I too went off humira cause it gave me fatigue sometimes and I also needed it for my arthritis my disease is mainly perianal and parts of large intestine. I also did a paleo style diet at the time and saw amazing results with the humira paleo style diet and MMJ indica's mainly I also used cbd only oil from hemp but didn't get a good result.

I regret it badly now getting off the humira as I type this I'm sitting in hospital with a pick line in my arm getting ready for surgery I'm on TPN at the moment enternal nutrition as they call it I need my bowel out. But because I went off med's the disease was active and made my large intestine huge on the outside walls and it is now adhered to my small intestine also I have a fistula and an abscess which got cleared up with antibiotics. If humira is reducing your pain then stick too it then modify your diet as it will increase your energy level's like it did for me and try a indica MMj strain high in CBD but the pure CBD oil's are a waste of time as they are made from mostly industrial hemp and are not worth it in my opinion all it for my was increase my appetite. Please consider not going off your med's as that was the worst mistake I ever made with my crohn's.
Hope you feel better soon,Ozboz
06-11-2017, 07:10 AM   #11
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If Humira is causing you problems, maybe you might want to ask your doctor about Stelara? It's a new drug - just got approved last September 2016. It starts as one infusion, then a subcutaneous injection every 8 weeks. It's been approved for psoriasis since 2009 and just got approved for Crohns last fall. It might be better to try something that's approved and proven to work vs. the THC which is experimental.
06-11-2017, 09:45 AM   #12
Jabee
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I've found CBD alone does not help reduce my pain or inflammation. So I use Indica as well (although mainly at night since it tends to make me sleepy). I've found it to be more helpful than the high or exclusive CBD.
06-11-2017, 10:31 AM   #13
Bufford
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Stay on your present course of meds and add in medical cannabis and monitor yourself. I wouldn't recommend going off Humira if it is providing some bennefit. The situation you have is that its unclear how much good Humira is providing, but to go off of it cold turkey might be a mistake.
In the meantime try mixing a teaspoon of Turmeric Curcuma into a glass of water on an empty stomach between breakfast and lunch. It can be found in the seasoning section of the supermarket. Use as a supplement to reduce inflammation of the GI tract. Keep a diary to monitor your system.
06-11-2017, 07:10 PM   #14
Someguy
 
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Some guy try humira in combination with MMJ it worked wonders for me use an indica at night time and you will see some good result's.

In saying that I too went off humira cause it gave me fatigue sometimes and I also needed it for my arthritis my disease is mainly perianal and parts of large intestine. I also did a paleo style diet at the time and saw amazing results with the humira paleo style diet and MMJ indica's mainly I also used cbd only oil from hemp but didn't get a good result.

I regret it badly now getting off the humira as I type this I'm sitting in hospital with a pick line in my arm getting ready for surgery I'm on TPN at the moment enternal nutrition as they call it I need my bowel out. But because I went off med's the disease was active and made my large intestine huge on the outside walls and it is now adhered to my small intestine also I have a fistula and an abscess which got cleared up with antibiotics. If humira is reducing your pain then stick too it then modify your diet as it will increase your energy level's like it did for me and try a indica MMj strain high in CBD but the pure CBD oil's are a waste of time as they are made from mostly industrial hemp and are not worth it in my opinion all it for my was increase my appetite. Please consider not going off your med's as that was the worst mistake I ever made with my crohn's.
Hope everything works out at the hospital and you get better quickly. I'll probably stay on the humira for a little while longer and once I start my mmj regimen along with some change in diet then I will probably speak to my GI about experimenting without the humira for a little with him monitoring me. I still have to wait a few more weeks to get my mmj recommendation (here in florida, there's a 90-day wait unfortunately). I understand what you're saying about cbd oil from hemp but when I was referring to oils I meant actual cannabis oil with a high cbd content and lower thc content. I wasn't looking for anything to mask pain and increase appetite like what high thc is known for but rather the anti-inflammatory benefits the cbd provides. I really appreciate your response and you seem really knowledgable on the subject so I'll take what you're saying into consideration.

However like I said before, I would be against any form of surgery so if it ever came down to it then I'd just try my hardest going the alternative route or mask the pain with thc till my last days. Hope you feel better.
06-11-2017, 09:07 PM   #15
Ozboz
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This is exactly what I have been doing they wanted my colon out since 2012 and I resisted till then I was exactly like you.
I got better for about a year in that time but the dreaded crohn's returned causing more internal damage and malnutrition to my body now I need a bigger surgery and TPN to get my body to an acceptable level for healing.
I have a temporary stoma now and you know what it's not as bad as I thought yes I had leaks and mental issues with it at the start but have learned to manage it and TBH it's better than shitting my pants all day when I'm out and about. Because the disease is active and did damage to my colon even while disconnected I had issues with fatigue and stuff like that but at least I could go to the shops walk my dog etc.. like I did before crohn's.

And with the MMj yeah that's exactly what I always looked for in a strain high CBD versus the THC in an indica but there was still enough THC to numb the body and get a good night's sleep. I saw the best improvement when I slept really well on MMJ and yeah I mainly gave up humira from fatigue and feeling like crap sometimes after the shot if I had my time again I would stay on humira as it did wonders for my crohn's general body ache's and pains and I think the MMj and diet helped because I have Ankylosing Spondylitis on top of my Crohn's
06-12-2017, 12:08 AM   #16
Ginger is her name
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Hi Some Guy! I'm not sure where you're located, but I know some people who have tried the new drug entivyo. They tried everything else, and this works for them. It has fewer side effects than other biologics.

I was a remicade user for 2 years. I've had great success! I'm not able to take it due to a side effect, but I'd still do it all over again.

I've heard some people have tried programs such as Shakeology, and thus has helped their Crohn's. Also, try a homeopathic dr. They may be able to help guide you. Chiropractic care as well as acupuncture may be helpful.

Now that being said...I can't talk so much about refusal of surgical procedures. I had an ostomy 4 years ago...not by choice...I woke up from emergency life saving surgery with it. In fact I told my dr I'd rather be dead than have one of those...I was 36 yrs old...all I will say, is that I'm glad I have it. My life is so much better...I can live it again! It was the absolute most difficult thing I've ever had to go through, but I'm hear today because of it!

Best wishes to you! I hope you are able to find something that works for you!


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