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Crohn's Disease Forum » General IBD Discussion » Done, everything. All of my meds.


06-12-2013, 01:20 PM   #1
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Done, everything. All of my meds.

After having an almost fatal dose of Remicade (Non stop hives for 2 weeks, throat closed up 2 days after the infusion, rushed to the hospital), they put me on Humira on Jan.22/13. I got fed up reading the side effects, I do not want this stuff in my system any more. I stopped on May 22nd. I have been in remission for 7 years.

To be honest, I can say that I feel 100% PERFECT. I just want to watch what I eat closely, I went to Shoppers Drug Mart to get some ointment for my pink eye, and while I was there, I brought back this danger drug and asked what Pro Biotic I should take. The pharmacist told me she would put me on Activia yoghurt for about 2 weeks, and then I can gradually go up to pills.

I have been on medication for 3/4 of my life, and I have never felt better since I was off of them. I hope I can stay medication free for the rest of my life. I am truly confident.

I have a feeling that my doctor will rage at me, but I am feeling great.

I also smoke have a joint a night before I go to sleep since many studies have shown that it has anti inflammatory properties. I have a tolerance for it now so I do not get that euphoria effect which I truly hate.

I just need some suggestions on what I should eat to gain weight. I am at 120lbs, 6'1 and I'm 19.

Thanks guys!
06-12-2013, 02:10 PM   #2
mickey
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Probiotics are great and digestive enzymes (with each meal) may help. Put in clean, pure food and drink and you may not have an aggrevated belly. Focus on the improvements and slowly add more calories so you can gain weight. Health and balance key and then gain weight by more calories. Congrats on feeling better!
06-12-2013, 02:34 PM   #3
shamrock15
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I really hope it works for you, coherent. At your height and weight, I think anything you can tolerate is what you should eat. I am only 5'9", and I know how I looked at 120. Hope you find something that is healthy and high calorie. Take care.
06-12-2013, 02:35 PM   #4
mish2575
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Good for you!!!

I'm curious as to why the doctors were giving you the biologics (Remicade/Humira) if you were in remission. I'm on Humira (previously Remicade) because I have fistulas, Hidradenitis, and psoriasis.
06-12-2013, 04:43 PM   #5
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I started clean eating a while ago. I generally stay away from labels. I cant get rid of EVERYTHING with labels but I think I cut out 90% of the processed foods in my diet. I tend to rely on Proteins Fruit and Veggies. I really tried hard to keep myself away from any medication. Unfortunately for me my body was not on the same page as my attitude! LOL

I can only dream of remission and no drugs! Keep us updated on how you do!
06-12-2013, 04:56 PM   #6
alex_chris
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At 120lbs and 6'1, I wonder whether this isn't malabsorption due to diarrhea and inflammation. Since I have been in remission, I don't have any diarrhea any more at all and eat a normal diet, do sport etc. I am 5'11 and 170lbs. I was down to 130lbs when I had continuous problems.
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Crohn's diagnosed in 1999
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Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
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06-12-2013, 05:47 PM   #7
mish2575
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At 120lbs and 6'1, I wonder whether this isn't malabsorption due to diarrhea and inflammation. Since I have been in remission, I don't have any diarrhea any more at all and eat a normal diet, do sport etc. I am 5'11 and 170lbs. I was down to 130lbs when I had continuous problems.
Good point, I hadn't thought of that.
06-12-2013, 05:56 PM   #8
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But the thing is, I have no pain, nor any diarrhea. I would like to say that I feel like a "normal person", but I do not know what that feels like since I was diagnosed at a early age. I'm assuming this is what it feels like to be "normal".

Thank for your support, guys and gals!
06-12-2013, 06:22 PM   #9
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Chronic inflamation can damage the intestinal wall lining, symptoms or not. the reason people have small sections of intestine removed is b/c of the changes in the wall lining that take place. Essentially scarring and thickening until waste/food is unable to pass. Obviously these changes even when minor can drastically effect the absorbtion of nutrients. for example the first foot or so of small intestine absorbs the majority of B-vitamins. How many of take supplements for B's? Coherent your remission is great but it is likely that parts of your intestines are having absorbtion problems due to past injury. You can get your weight back. I'm also 6 foot and was down to 134. During my longest remission I was up to 175 which is a good weight.
06-12-2013, 06:42 PM   #10
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Chronic inflamation can damage the intestinal wall lining, symptoms or not. the reason people have small sections of intestine removed is b/c of the changes in the wall lining that take place. Essentially scarring and thickening until waste/food is unable to pass. Obviously these changes even when minor can drastically effect the absorbtion of nutrients. for example the first foot or so of small intestine absorbs the majority of B-vitamins. How many of take supplements for B's? Coherent your remission is great but it is likely that parts of your intestines are having absorbtion problems due to past injury. You can get your weight back. I'm also 6 foot and was down to 134. During my longest remission I was up to 175 which is a good weight.
My first ft of intestine is badly inflamed from what the doctor told me, should I ask him about removing such bad parts?

Regards.
06-12-2013, 07:07 PM   #11
Johnnysmom
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I can totally understand your frustration with medications. My son has only been doing this a year and a half and it sucks. I can only imagine what it feels like to have done this most of your life.

The only advice I can give you is that you clearly need to give no meds and living clean a try for your own mental health. I would also agree that at your current weight you are most likely not in remission. So, if you feel this is something you need to try, I would want testing (fecal cal) done every 3-6 months to monitor what your current disease status is. Please prepare yourself, and have a back up plan for when you need meds again. At 19 years old it is highly unlikely that you will be able to remain med free for the rest of your life. Realize also that stopping things like Humira allow your body to produce antibodies and it may not work for you later.

There are many new medications that are currently being developed. I truly believe that in your lifetime you are going to see many medications with fewer side effects and better results.

About surgery, you can remove the diseased area but most often crohn's will return in the healthy tissue. Taking meds after surgery greatly increases the chance of long remission.

Please let us know how you are doing. ((((Hugs)))))
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06-12-2013, 07:23 PM   #12
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I can totally understand your frustration with medications. My son has only been doing this a year and a half and it sucks. I can only imagine what it feels like to have done this most of your life.

The only advice I can give you is that you clearly need to give no meds and living clean a try for your own mental health. I would also agree that at your current weight you are most likely not in remission. So, if you feel this is something you need to try, I would want testing (fecal cal) done every 3-6 months to monitor what your current disease status is. Please prepare yourself, and have a back up plan for when you need meds again. At 19 years old it is highly unlikely that you will be able to remain med free for the rest of your life. Realize also that stopping things like Humira allow your body to produce antibodies and it may not work for you later.

There are many new medications that are currently being developed. I truly believe that in your lifetime you are going to see many medications with fewer side effects and better results.

About surgery, you can remove the diseased area but most often crohn's will return in the healthy tissue. Taking meds after surgery greatly increases the chance of long remission.

Please let us know how you are doing. ((((Hugs)))))
Thanks a lot
06-12-2013, 07:28 PM   #13
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That is a common sight for inflamation for us crohns folks. Excision of intestine is only done when the wall of of the intestines are so thick that food/waste cannot pass through it.
Yours just doesn't work as well....neither does mine! So you find out what supplements you can take that are easy to digest to help out. For example B-vitamins. Since you know you will have trouble getting absorbtion due to site specific inflamation you could take a sublingual (a drop under the tongue) B-complex supplement! research food types like protien shakes that are EASY to digest.
Also you probably should talk to your Doc about what you are planning. Tell him or her what your goals are and why you decided to stop your meds, ask if there some alternatives or safer steps you can take to reduce the amount of medication your taking.
Crohns and immune disorders are very decieving during long remissions. Take care bro!
06-12-2013, 10:39 PM   #14
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Thanks James.
06-13-2013, 08:04 AM   #15
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It's good to know you're feeling well. I've tried probiotics and they didn't do me any good at all - I read recently that probiotic yoghurt producers have been banned from advertising focussed on the digestive benefits of their products as it is not scientifically proven, though probiotics won't do you any harm.

I've hated the side effects of medications, and I'm sure you're aware some have long term risks as well. However, medications have also saved my life, so it's not always the best decision to forgo them. You don't have to take an all-or-nothing approach though. You may be able to go a long time without meds, but if you get symptoms again, or if your tests results show problems later down the line, you can always reconsider. Also there are many different meds for Crohn's, which have different effects at different doses, different side effects for different people, and often ways of countering some of the side effects which may occur or minimising risks. Some people find they benefit from medications along with improving their health through diet, lifestyle and alternative treatments.

There was one point where I felt I couldn't tolerate prednisone any more, and I wanted to give it up but it was sooner than my doctors had planned. They were able to give me other medications to counteract the side effects that were causing me most grief, and I was able to tolerate the prednisone a while longer. If you do need medication, you don't always have to rule it out because of particular risks or side effects - there sometimes are ways to get round them.

Medications are often stereotyped as harmful, and it's usually true that people are better off without them unless necessary. But I think medications aren't necessarily a bad thing - they can and do save lives, and their good qualities are sometimes overlooked when they're written off as unnatural and dangerous. It's clearly a positive that you're feeling well now, but you might want to keep an open mind towards medication.

If you're not losing weight from diarrhoea or vomiting, what is your appetite like? I have no problems with malabsorption, but I have no appetite which has led to me being underweight. As a symptom, lack of appetite might not be as obvious as diarrhoea, pain, etc. Maybe you could count how many calories you're taking in on an average day, because it might be that you're feeling full when in fact you haven't taken in enough food to keep your weight healthy.
06-13-2013, 08:53 AM   #16
Beach
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With weight issues it can be confusing on what works with gaining and loosing weight. I think everyone is different. For example, some report big success with weight loss when avoiding grains such as wheat. Others of course with digestive issues can experience the opposite, equally loose a good amounts of pounds when eating wheat products.

Something I'm finding out this week is that avoiding milk/ dairy items is causing weight loss. I'm down around 10 pounds this month. I'm not all that concerned about it, as my digestion is good and I'm feeling well. I'm liable to level off soon. It is a common report too about experiencing weight loss after avoiding dairy.

As for probiotics, diseases and weight issues - it's a topic being worked on that shows promise, but with many details yet to be worked out. One recent small study I recall about diabetes, inflammation, big weight loss from the pathogenic Enterobacter bacteria.

http://us2.campaign-archive1.com/?u=...4&e=7010320a2b

excerpt from the article:

...This paper looks at inflammation from a variety of angles, but all of it drives back to the overgrowth of a nasty opportunistic bacteria called Enterobacter. You see, many bacteria produce a molecule called lipopolysacharide (LPS) which is important to the bacteria for communication and protection. Virtually all vertebrates show a very potent immune response to LPS, which shows us this is a highly conserved evolutionary trait. The response to LPS is fascinating (to me anyway) in that it looks IDENTICAL to a terribly managed diabetic state: elevated blood glucose, triglycerides and inflammatory signaling agents. The liver and brain are not communicating properly which allows the liver to produce MORE glucose via gluconeogenesis, dumping this unwanted sugar into an already challenged system. This process can quickly lead to a feed-forward mechanism in which homeostasis is pushed further and further out of whack - leading ultimately in death in extreme cases. If you have ever heard of someone dying from sepsis, this is what happens.

So, back to the paper: researchers noted than an obese individual had a remarkably high concentration of this pathogenic Enterobacter bacteria. Enterobacter is nasty in that it produces prodigious amounts of LPS. This abundance of LPS makes itís way through the gut and appears to initiate a cascade of signaling which leads ultimately to a state of insulin resistant diabetes. The researchers placed this individual on a diet of whole grains, prebiotics (to encourage healthy gut flora growth) and a mix of traditional Chinese herbs which have historically been used to treat GI infections. The results were pretty remarkable: the patient lost 51 kg in 23 weeks and at the end of the process was essentially free of the Enterobacter bacteria. As you might expect, blood glucose, blood pressure and markers of systemic inflammation were all dramatically improved at the end of the protocol....
& a general article on the topic.

"Health, Weight and Gut Flora"

http://www.dietdoctor.com/health-weight-and-gut-flora

Good luck! Hope you are able to find what works best for you for gut health and in your case improved weight.
06-13-2013, 01:17 PM   #17
Ihurt
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I totally understand your frustration when it comes to medications. They do have some very awful side effects. I have not been diagnosed with crohns. I am having awful issues though and have went through some tests but so far I am being told I " likely" have IBS. I just don't know.

Here is the thing, you have to weigh the risks when it comes to the meds. I mean obviously you do NOT want to stay on a medication that is causing you to go into anaphylactic shock! No way, that is way to risky and will only get worse if you stay on that drug. Anaphylactic shock is very serious and can cause death.

I myself do worry about what I will do if I ever get a diagnosis of crohns disease. I will NOT be able to go the western med route due to all the side effects of the medications. I have chemical sensitivities than makes it very hard for my body to tolerate chemicals and toxins. I mean in my opinion, I think it is ok to go the natural route. I mean but I think you should probably be seen by a naturopathic doctor who can help you with this. There are natural meds that can help with things. Again, I also think you have to be careful and keep an eye on things. I mean you also do not want your disease to get worse either. I mean have you tried all the meds that treat crohns? I know that prednisone is NOT a drug you want to be on for any length of time, that drug will destroy you if you stay on it for any length of time. It is ok for short term occasionally, but that is about it. There are other meds out there that they treat crohns with though so I am not sure what all you have tried. I agree that a lot if not most drugs are going to have side effects. They are all poisons. The thing is, you may find one that helps you and does not give you too much trouble. If that is the case, and it is enough to keep you in remission, then that would be good. I guess you have to access the situation. I mean only you know what and what not your body can tolerate. Believe me, I do feel for you. I have reactions to most ALL drugs so I cannot take most of them. If that is your situation, then maybe looking into the holistic side would be a good idea. But again, I would still keep in contact with your gastro doc so he can monitor things... Hope you find something that works for you. Oh, and by the way, my sons friend was dx with crohns disease when he was 16 almost 17 years old. He smokes cannabis daily to keep it at bay and he is not on any meds at all. He is 21 years old now and has not had to take meds for the last 4 years. He swears the cannabis has helped him more than any drug he has ever taken. Go figure.
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