Infliximab, Azathrioprine, is there a natural way to heal a fistuala?

[Madrileno J]

Hi, I have had Chron's for 10 years. More or less it hasn't ever really caused me any problems. I have done all the sports and social things I've felt like doing and I haven't let Chron's prevent me.

I have experienced mild and severe flare ups which have always settled down. These have always been caused by things I have done (eaten, drank, exercised) and I could have avoided almost all of them by excluding these things from my lifestyle.

I've taken Cemetedine 200mg twice daily for 10 years which has worked for me. In February this year I went to get a check up with a specialist as I hadn't seen my previous specialist for two years because she said there was no need as long as I was feeling well. I was still feeling well when I went in February, I just thought it would be a good idea to see a specialist again.

After giving some blood and stool samples and having an MRI my new specialist discovered I have a fistula between the large and small bowel and has confirmed Chron's in the lower bowel. He has recommended that I start taking Infliximab and Azathriopene to heal this fistula.

I've read about the side effects and I don't want to take them although he has told me from the tests they've done I shouldn't have any serious side effects.

I know that if I controlled my diet and other things that aggravate my condition I could feel totally well almost all the time. I want to ask if anyone knows of a natural way to heal a fistula? and is the method of healing the fistula by making the disease go into remission?


If you have any ideas about this that would be great.

Thanks for your answers, James.

 

[Grumbletum]

Hi James. Sorry to hear you're having Crohn's troubles again. If it's a very small fistula, it might heal, but I haven't heard of many that have without some sort of intervention. In my case, I had one bowel to bladder which healed after a course of F
Cipro and Metrodinazole ( I'd also been on Pred and Azathioprine for a while before taking the antibiotics. ) Still ended up on Infliximab tho cos of inflammation in the TI, but only for three infusions.
I've read also that a liquid diet can give the bowel the rest it needs to heal. Do you know if there is abscess involvement?

 

[Madrileno J]

Hi Helen,

Thanks for your post. No there are no abcesses, which is quite lucky I think. I think my specialist wants me have the anti-biotics to heal the fistula and keep the disease in remission. I don't think he's recommending them to improve how I feel as I can feel pretty good most of the time.

He says I would have to take them for a few years but I really don't want to as I know about some of the side effects. What I'd like to explore is possibility of finding a way to make the disease go into remission naturally and hopefully the fistula will heal.

 

[David]

Hi Madrileno,

Since you have a fistula, your disease is now in a new phase, a potentially more serious one. So no more two year hiatuses from getting a checkup, ok?

I can understand your desire to try a more natural approach. While I think that Remicade and Azathioprine are excellent medications, especially if you have fistulae, I'm here to support you in whatever course you want. The key is to educate the heck out of yourself so that your decisions can be made in an informed manner since wrong decisions can have serious implications. With all that said, a couple things for you to research:

1. Enteral nutrition.
2. Low dose naltexone

I do believe that some fistulae can be healed through these means but you would have to be extremely vigilant. If it was me, I'd utilize the two above and either Remicade or Azathioprine at the same time until the fistula was healed and then partake in a massive diet and lifestyle change. But that's just me, i'm a fan of the shotgun approach

Often times fistulas are associated with stricturing. Do you know if there is a stricture distal to your fistula?

Welcome to the forum by the way!

 

[Madrileno J]

Hi David,

Thanks for your post and info. Yes, I'll certainly be making sure I make regular check ups from now on. I thought I should have been seeing a specialist twice a year but my last specialist actually told me I didn't need to see her unless I was feeling unwell or if it didn't settle down.

I do have a stricture that is just after the fistula and I think that's what has caused it. I am going to totally give up alcohol and cut out all culprit foods, maybe even consider a liquid diet and be really careful with what exercises I do.

I just don't like the sound of the anti-biotics after everything I've read about them. I've heard about the cancer risk and with arthritis, (currently being tested for athritis after waking up two weeks ago with pain in every joint in my body which improves with temperature) this can be increased.

My specialist has said if the fistula got worse or there was a problem it would mean a major operation and this is why I was wondering if a flare up would cause this to happen? If the inflammation corresponds to when I feel unwell I could avoid nearly all of this by being extremely careful. So as long as I don't have a flare up it shouldn't get worse which is a bigger risk in some ways but I'd prefer this to taking the drugs.

If you have any ideas about that, I'd be really grateful. Thanks for your posts guys.

 

[David]

Hi Madrileno

Let me first make a small correction for you that might help you going forward. Infliximab and Azathioprine aren't antibiotics. Infliximab (commonly referred to as Remicade) is a "biologic" and Azathioprine is an immunosuppressant or immunomodulator depending on the source.

What our job here is, is to help educate and support you. It's important that you make an educated decision rather than one based upon emotion. Yes, there are potential side effects to Infliximab and Azathioprine, some more common than others. The cancer risk is VERY low and it's a matter of weighing the potential risks versus the potential benefits.

My biggest concern is that you're making an emotionally based decision right now. To control fistulizing disease without strong medications is complicated and requires a substantial amount of knowledge, dedication, close monitoring, and some luck as well as even if you do everything right, it might not work. For example, you mention being careful to avoid inflammation. It's not that easy You could be careful and feeling well but there could still be active inflammation slowly causing your stricture to become fibrotic (scar tissue) and become narrower and narrower. Thereafter your fistula could change from low output to high output and things become ever more complicated. Other problems could easily arise as well.

These drugs can be scary, I know. The thing is, you may not have the time to educate yourself to the point that I would feel comfortable saying, "Yeah, you understand what is going on and the implications. And you understand how to potentially control this with diet, less potent medications, and make sure it's not getting worse."

Again, I'm not trying to convince you to take these meds, I just want you to make an educated decision. If you'd like some more data on the medications, we'd be happy to provide it.

Whether you do utilize the meds or not, I believe enteral nutrition can play a pivotal role in your success. I strongly recommending getting this book and reading it a couple times.

No matter what, we are here for you.

*hugs*

 

[Madrileno J]

Hi David,

Thanks for your post and all the information and points about the drugs. Yes you're probably right, I am making a decision based on emotion, it's just a shock when you presume you've been healthy more or less for 10 years and then you have to start taking stronger medicines.

I had a look at some studies and I think I scared myself by reading the results. I am prepared to take the new treatments but I still think I'll look into some natural alternatives or things that can help as well. I am aware that this problem needs to be dealt with right now so I think I'll go ahead with the treatment and if it looks like it's healing the fistula well then I may consider another way to keep the level of inflammation down. Just as an alternative to staying on the new drugs for a few years.

I am going to start a new diet , Paleo diet, which I've been really impressed with from the research I've done. I went wheat free at the start of the year and I feel much better since doing that so I think this will be great.

Thanks again for your help. James

 

[David]

Hi James,

I bet it was a shock to have all this come about after ten years

The results of some of these studies can be scary indeed. And the labels and all the other information they provide is scary too. And it's possible to get some of that stuff so in my opinion, it's good to educate yourself if you decide to go on any of these so you can be proactive if you do start to get symptoms.

I think trying the paleo diet is a great idea. Good for you!

We're here for you bud.

 

[JohnnyRottenAppleseed]

Hi, I have had Chron's for 10 years. More or less it hasn't ever really caused me any problems. I have done all the sports and social things I've felt like doing and I haven't let Chron's prevent me.

I have experienced mild and severe flare ups which have always settled down. These have always been caused by things I have done (eaten, drank, exercised) and I could have avoided almost all of them by excluding these things from my lifestyle.

I've taken Cemetedine 200mg twice daily for 10 years which has worked for me. In February this year I went to get a check up with a specialist as I hadn't seen my previous specialist for two years because she said there was no need as long as I was feeling well. I was still feeling well when I went in February, I just thought it would be a good idea to see a specialist again.

After giving some blood and stool samples and having an MRI my new specialist discovered I have a fistula between the large and small bowel and has confirmed Chron's in the lower bowel. He has recommended that I start taking Infliximab and Azathriopene to heal this fistula.

I've read about the side effects and I don't want to take them although he has told me from the tests they've done I shouldn't have any serious side effects.

I know that if I controlled my diet and other things that aggravate my condition I could feel totally well almost all the time. I want to ask if anyone knows of a natural way to heal a fistula? and is the method of healing the fistula by making the disease go into remission?


If you have any ideas about this that would be great.

Thanks for your answers, James.

Antibiotics and go off immunosuppresants. Worked for me.

 

[Madrileno J]

Hi Guys,

Thanks for all your answers. I have a couple of other questions I'd like to ask.

I've started the Paleo diet and it's going pretty well, although I was hospitalised last Friday after taking Pentasa for the first time and eating a colliflower stew! I had severe bloating and was told to go to AE, I was fine after throwing up multiple times and going to the toilet.

Since then I've felt really good and the joint I mentioned has almost completely gone and I feel a lot better with my Chron's also. Sorry to be graphic but I have to ask a question about stools. When I was in hospital I was throwing up and passing green liquid, probably from eating a huge amount of kale and spinach, that has stopped totally but I've noticed from eating Paleo my stools are a bit looser and always turn the water cloudy in the toilet.

I have been eating carrot, spinach, beetruit and sweet potato every day, does anyone know what this could be? As I say I feel good there's no blood, no pain and no real urgency.

Also the SCD diet says cut out all starch as it ferments int the stomach but Paleo allows some starches. I need starch carbs to have enough energy any thoughts on this?

Thanks again for your answers.

 

[Grumbletum]

Hey James. It's good to hear you're feeling better And yea, cauliflower is one to watch. I can tolerate a lot of veg, but not the cauli. Onions I have to go easy on too. About the loose stools, it could be the radical change in diet. When I went on SCD, I had awful D for the first two weeks - ironic as wasn't one of my usual symptoms before remission. My research into SCD explained that this is because of a 'die off' of bad bacteria and that things should settle.
If you're sticking with Paleo, I would maybe reintroduce starches after things have settled a bit and see how you tolerate them. Food triggers are such an individual thing. Red meat is allowed in SCD, but even now in remission I have to avoid it. You might have to tweak the diet a little bit to suit.

 

[Madrileno J]

Hi guys,

I have a couple more questions about the paleo diet and Infliximab and Azathrioprine combination therapy. Just to give you an update I saw my specialist at the start of this month.

I agreed to go ahead with Infliximab and Azathrioprine combination therapy which will last only four months. My specialist told me that the cancer risk is virtually non-existent in this short period which makes me feel a lot better.

I wanted to ask your opinions on this. Would you agree with this? As this would certainly make me feel even better about starting it and effect my decision to go ahead.

Also I have read some really positive things about the Paleo diet, which I have trialed with great success. I read some accounts, from reputable websites, of people who have successfully healed fistulas and put the disease into remission.

I am trying to be sensible and not assume that a diet is a complete cure for Chron's as I know not everyone will have the same success, but I do think this is something everyone with an auto immune disease should look in to as most doctors don't even know it exists.

 

[JohnnyRottenAppleseed]

Is infliximab aka Humira? It's in the top 5 FDA drugs with severe and fatal side effects. In my opinion, it's the last resort nuclear option. It's up to you so be fully informed. Humira will cause fatal TB or any number of other life threatening infections before it gives you cancer. Did your doctor go over those side effects?

 

[David]

Hi Madrileno,

The really scary lymphoma most associated with those medications is seen in its highest prevalence in younger teen males. Anyone can get it of course, but if you were a young male, I would probably advise against it. That you have fistulizing Crohn's disease and are only going to do four months of treatments, I say go for it if you're comfortable.

I think you're being very smart hitting the disease from all angles. Good for you. At this point, it's imperative that you take your disease very seriously. If the drug combo and diet gets you to remission, I'd advise to never cheat on the diet. Never become lazy. Your disease has progressed too far and you want to be highly proactive.

Is infliximab aka Humira? It's in the top 5 FDA drugs with severe and fatal side effects. In my opinion, it's the last resort nuclear option. It's up to you so be fully informed. Humira will cause fatal TB or any number of other life threatening infections before it gives you cancer. Did your doctor go over those side effects?

No, Infliximab is not Humira. It's Remicade. Humira is Adalimumab. And Humira doesn't CAUSE TB, it just makes TB a lot worse if you have it which is why they test for it before starting you on it.

 

[Madrileno J]

Thanks David,

I'll definitely be sticking to the Paleo diet and thanks for recommending that as I would definitely have cheated if I hadn't heard that from you. You're right, I should recognize that I have a health condition and that I have to change my lifestyle to be healthy.

Thanks for your opinion on Infliximab and Azathrioprene. I am still considering these treatments before I go ahead with the first infusion of Infliximab, I've started taking Azathrioprine tablets. I think I am going to speak to my doctors and ask them to assure me the risks are really low in a four month plan.

I think these drugs are really great and I know the sensible choice is to go with them. So if I decide to go with monotherapy, which is probably my preference, or even just a Paleo diet I feel I've given it a lot of thought.

Just thought I should mention, I am 28 I thought that could make me a young male? I do like to wear a cardigan and slippers though form time to time :biggrin: