MyStory... Remicade no longer works 4 me

[fgillette1986]

okay, so basically I was diagnosed with Crohns back in early 2003. I'm convinced I had it for about 2 years before they actually diagnosed me though. BAD JUJU!

Anyway, I've been through a whole bunch of medications. First was pentasa, mesalamine, cipro, flagyl, blah blah blah. Then finally they decided to start me on Remicade. It worked pretty good. My doc didn't want to continue me on it because of the possible "cancer threat". So, I would do well for about 9 months to a year, I'd have a flare up, get a couple infusions and be fine.

Well, I had a colonoscopy for a check up. The results were not positive. Decided to give me another remicade infusion. 10 minutes into the infusion, I had a small allergic reaction. No more remicade for me.

My doc decided to put me on ectocrin for a month and then see how I was doing. He's thinking about putting me on this other drug that's not FDA approved for Crohns specifically, but it is being researched and all the tests have been positive.

In the meantime, I've decided to look for alternative ways to help treat my Crohns.

I've noticed drinking organic Ginger Tea with Lemon Peel really makes the gargles go away when eating meals. (Yogi Tea)

I've also been looking into probiotics. I've ordered some Primal Defense to try that. It'll get here on Tuesday.

To make my diet better, I'm eating more salmon and tuna (oily fish). Looking at drinking smoothies every morning to add more complex carbohydrates into my diet.

I really hope some of these herbal treatments help out. Looking forward to trying out the probiotics with homeostatic soil organisms in it.

I'll update my findings. Any advice greatly appreciated.

 

[Mazen]

Maybe you can try bee propolis. It's a natural antibacterial antiviral. Some people have found it very useful. Also try finding a good multivitamin/multimineral that you can tolerate. also for additional Omega 3 you can use Flax oil and add it to smoothies or yoghurt. Try only one new thing at a time and see how it works. Good Luck

 

[fgillette1986]

Yeah, I want to try this primal defense for a while and see what happens. Does anyone have suggestions for a good multivitamin? I was taking Centrum for a while.

I may look into the flax oil to add some Omega 3. Thanks for the suggestion.

This website has really helped with information. I thought I would share.

http://www.crohns-disease-[wiki2="Probiotics"]probiotics[/wiki2].com/index.html

I especially like the Crohns Diet section.

 

[Mazen]

Hi. I currently use centrum, but I'm trying to find a more potent and natural one that suits my system. I just bought one from solgar. I'll see how it works. i'm waiting for my stomach to settle before using it.

For diet I suggest you read some books regarding this. One of my favourites is "The new eating right for a bad gut" by James Scala. It has lots of useful info and talks a lot about Omega 3 and inflammation.

 

[Nancy Lee]

Welcome Aboard

Hi!
Just wanted to pop in and say :welcome: to the forum!

I know you will meet a lot of people here in the same boat,
and hopfully get most of your questions answered.

Hugs~Nancy

 

[fgillette1986]

Mazen, thanks for the book recommendation. There's a lot I would like to learn about a healthier diet and nutrition. I've been reading up on Omega 3 for the last few days.

Be sure to let us know how that more natural multivitamin works out. I'm very much pro-natural. It's too bad so many things are processed. Even "fresh" vegetables and subjected to pesticides, herbicides, and artificial nutrients. Sometimes, I even wonder about the "organic" label.

 

[fgillette1986]

Thanks Nancy Lee. I'm open and ready to share what I have learned and experienced. I've already learned a lot, which just makes me more excited.

 

[fgillette1986]

I just started taking Primal Defense yesterday. I'll report if I think there's a difference in a week. Course, I'll give it more time than that. I think someone said they noticed a difference within 3 days. We'll see.

 

[fgillette1986]

Okay. So I've been taking Primal Defense for a week now and I'm very impressed thus far.

Before I start, my initial condition: I would always see traces of blood in my stool. When I had a BM, it seemed urgent and after going to the bathroom, I felt like I needed to go to the bathroom again within 30 minutes. Usually, 2 trips and I felt okay. Little, if any, stool would come out on my 2nd trip to the bathroom. I had a fistula that re-opened and draining a little bit, but only after a bowel movement. It would somewhat itch after a BM too and feel a little swollen. I would regulary have 1 true BM a night... with the little urgent "I need to go but nothing is coming out" not included.

So, the first couple of days seemed somewhat "normal". By normal I'm referring to my initial condition. There was little traces of blood in my stool. The only thing I noticed different was that when I would go to the bathroom, I didn't have a quite urgent urgent feeling.

"When I had a BM, it seemed urgent and after going to the bathroom, I felt like I needed to go to the bathroom again within 30 minutes"

In the 2nd day, it was more like within 2 hours instead of 30 minutes.

On the 3rd day, I noticed something interesting. No blood in my stool. "Okay, interesting" I thought. Every once in a blue moon I would have a BM with no blood, so I thought it was just one of those times.

The next change I noticed is that my BMs seemed to be a little more solid. Usually, it was just a wet mess. And my urgency after the "real BM" went away.

The next thing I noticed was the urgency went away. I no longer needed to go to the bathroom right after a bathroom trip. By this time, I started to believe this stuff actually works. As a trade off, my BMs upped from 1 BM a day to 2 BMs a day, but at completely different parts of the day. Also, the itchiness of my fistula went away after BMs.

The last thing I've noticed is my fistula stopped leaking and is even closing up. It's almost completely closed up now.

So, for a recap. There's no longer any traces of blood in my stool. I went from 1 BM a day with urgent bathroom trips right after to 2 NORMAL BMs a day. Stools appear to be more solid. The fistula that was leaking and itchy after BMs no longer itches and is closing up. Now that I think about it, another thing I've noticed is my stomach doesn't grumble and groan after meals anymore.

I can't say I credit everything toward Primal Defense, but I think it is really helping a lot!

 

[ruthymg]

Thats great news, I hope it continues to work for you. Just thought I would add though, without putting a dampener on things, that fistulas and loose BM's tend to go hand in hand. Could it be that maybe the Primal defence has helped a little in healing the fistula as it has regulated you. Less bowel movements and less liquid equals less chance of fistula swelling and therefore once it has drained and doesn't have chance to swell again it will naturally heal. Once the fistula starts to heal, the loose BM should slow down as well. What I am trying to say that if one gets better than so does the other, does this make sense?

Ruth

 

[fgillette1986]

Definitely. I imagine that when it's more solid it's harder for "stuff" to get in those "tunnels", if ya know what I mean. haha. I'm still doing very well. I noticed I get a lot deeper sleep... but I think it's because I stopped drinking caffeine.

 

[fgillette1986]

My fistula is completely closed up now! YAY!

 

[mikeyarmo]

THAT IS GREAT TO HEAR!!!!

I am glad that you have been able to find relief and I hope that this motivates you to believe that no matter how bad things may look, we can always have a sudden recovery.

 

[linds92]

remicade

I had a reaction to remicade the 2nd time i took it. I had shortness of breath and my pulse was really high. After that time it was fine.

 

[fgillette1986]

Man, no kidding Mikeyarmo. I was badly sick for 2 years before they diagnosed me. It's amazing how one month your just sick sick and the next month your feeling great.

Hi Linds92. So, does Remicade still work for you currently?

 

[ruthymg]

So pleased to hear your fistula has closed. Wish mine would!! I think I am destined to have problems with fistulas forever. Its so good to hear that they can actually heal, you hear so many stories where peoples haven't healed that you begin to wonder whether they actually can heal.


Ruth

 

[fgillette1986]

While on remicade, it would close up and stop leaking for about a month. After that, it was pretty much downhill until my next infusion.

I hope you find you way Ruth. It is bound to come around sooner or later.

 

[fgillette1986]

Okay, so I saw my gastro specialist today. He said to keep on doing what I'm doing. We talked for about 10 minutes about organics, probiotics, omega3's, and he recommended that I read a book called, "The Omnivore's Dilemma".

I'm not on any prescription drugs! First time in almost 4 years!

I have to say... This website has really helped me A LOT. Thanks everyone.

 

[Karen]

I am sure that you will have a great time here and you will also make plenty of new friends ... jump right in and have some fun !!

 

[fgillette1986]

It's been a while since I've posted. Everything is going well. I'm still prescription drug free! Personally, changing my diet changed my life. I'm thinking about studying to become a nutritionist. So many people have no clue what they are putting into their bodies. )0:

 

[D Bergy]

My personal experimentation follows your results exactly fgillette.
I believe I know the reason why it works, but one persons experience is not enough evidence to say for sure.

I will just say that it appears at this time that there is a strain of Helicobactor Pylori that causes my inflammation. It is the same strain that caused my bad reflux and inflamed stomach. I rid myself of it in my stomach a while ago with no further problems. I have not been able to rid myself permanently in the rest of my intestinal tract, but have have been able to keep it greatly reduced. I believe I can eliminate it but it is not going to be fast or easy.

The items you are taking such as Omega-3 fatty acids (fish oil) is a H Pylori killer.

Probiotics and yoghurt contain bacteria that are a H Pylori suppressor.

Other things that may be useful are:

Mastic gum is traditionally a stomach remedy and has killed H Pylori in vitro but has not been proven to work in the body.

Black currant seed oil has been indicated as a H Pylori killer in the body in at least one study.

http://www.thorne.com/media/helicobacter_pylori.pdf

I am really glad to hear you are doing so well.

D Bergy

 

[fgillette1986]

6 months ago I had a little set back... probably due to my crash in my dietary discipline. Haha. I went to the doctor and he wanted to put me on Humira. I turned that down. He then put me on Prednisone... I had some bad effects to it, including irregular heart beat patterns. He didn't think that was the medication doing it. So, I got fed up with the doctors again and started my own thing. I'm doing very well again. Here's what I'm doing:

1 shot of apple cider vinegar a day - levels the PH in your body to 7.0
3 pills of ginger root a day
1 shot of power 4 a day - includes goji, noni, mangosteen, and acai berry
3 pills of omega 3 fish oil a day
1 pill of gingko biloba a day
1 enzymedica digest pill before meals and one before bed

I was juicing a lot of blueberries and cherries, but since my girlfriend was having some issues with her anemia, etc, I gave it to her... so instead I drink at least one pomegranate blueberry naked juice a day.

Feeling great now. On my next flare up, if I have a next flare up, I'm going to try out some hydrotherapy to get me back on track.

 

[fgillette1986]

I went a long time without any man made medications, with the exception of the occasional anti-biotic when I catch a cold which is about once a year.

Things were going well except for pain. The damage spread externally to my bottom and it hurt during BMs. Almost like hemorrhoids or something but they are skin tags and rough skin instead. Due to the pain, I decided to go on Humira about 5 months ago. The good news about it was almost as soon as I started taking it, I could eat anything I wanted and I could tell my bottom started healing right away. During the loading stage of the medicine, I had energy, but also couldn't sleep for 2 days at a time and then I'd crash for 18 to 20 hours. After the loading stage, I noticed my acne cleared up completely. I had one incident where I almost passed out while I was at work. I couldn't think of anything that would have caused it other than Humira. I ate that morning so it wasn't blood sugar. I drank and kept hydrated. Never had that happen to me either.

Anyway, 3 different people in one day told me horror stories about Humira. One person's sister now has acute liver failure, another person's relative developed cancer, and another person said her husband had a near death allergic reaction to it. I took that as a sign to come off of it and go back to natural.

I'm taking Acai100 now. I figure I'll try taking a shot (about 1 fl oz) every 8 hours for a couple of months and see what that does.

The same lady whose husband has Crohns said her husband started drinking Acai Berry juice everyday. After 6 months, he had a colonoscopy done that they couldn't find any evidence of his Crohns. She said he started on Monavie, but because it was so expensive he decided to try some other juice with Acai in it that's much cheaper. The Acai100 I'm taking is like $40 a bottle but it's supposed to be 100% acai berry... So I'm going to give it a whirl and see if I have as much luck with it as this lady's husband did.

 

[fgillette1986]

My doc decided to put me on ectocrin for a month and then see how I was doing. He's thinking about putting me on this other drug that's not FDA approved for Crohns specifically, but it is being researched and all the tests have been positive.

It turns out the drug I was referring to at the time was Humira. Due to the list of side effects I decided to not go on it, but pain made me rethink on that decision.

 

[DustyKat]

Hi fgillette, :bigwave:

I hope the Acai berry works for you and please keep us up to date with how it is going 'cause I would be interested to know!

I noticed you have mentioned in previous posts about your diet. Where are you at with that now?

Good to have you back here,
Dusty

 

[fgillette1986]

Hi DustyKat! Well, I'm still in remission from the Humira and while I was on Humira I could pretty much eat anything I wanted. lol. It was so amazing to eat a salad without consequences for the first time in years! So right now, no special diet except that I avoid red meat.