My story/ please advise

[Raynedark]

Hello,

My story started with a massive abcess on my bottom last October. For 3 months it drained and my doctor told me that was the normal course of healing. I knew it wasn't so I had an exam under anesthesia. I had, and still have, a fistula. They put in a drain in January and it drained for another 2 months. Then I had a colonoscopy and was diagnosed with Crohn's. I also started seeing a specialist at a different hospital. They put me on Cipro and Flagyl. I'm still on the Cipro. I had a seton placed in the beginning of this month and am looking into medications.

This is where I could use a little help. My doctors want to put right on to Remicade and 6-MP right off the bat. I'm going to refuse the Remicade because I'm terrified of the side effects and the people I've talked to have said it's not worth the risk. I think I would like to try the 6MP though.

What have others' experience been with 6MP and/or its effect on helping heal a fistula?

Thanks so much!

 

[Angrybird]

Hello and welcome to the forum I myself have not had a fistula or abscess for which I am very thankful but am about to start 6-mp myself. It is defiinetly worth checking it out on the treatment forum to see how others have found it: http://www.crohnsforum.com/forumdisplay.php?f=64.

Wishing you all the best

AB
xx

 

[Manzyb]

hi ray! welcome to the forum!

As AB has said, I would check around the Remicade forum. I started taking it back when I was 15, and was on it for about 6 years. It healed up a couple of fistulas I had. I can't really say much about the 6-MP because I didn't end up taking it long. My system couldn't tolerate it.

While on Remicade, I never had any side effects other than being tired for a day or two after the infusion.

Good luck to you!

 

[Adam1971]

Hi there. welcome to the forum. I don't have any experience directly with your questions, but I do have Crohn's, and I live in Vermont, too. SO, I thought I'd say "Hi". I live near Burlington.

 

[hope4]

Hello Ray,

I had a fistula with seton for almost 2 years. Docs wanted me to take Humira or Remicade but I refused. I decided to stick with my new diet Specific Carbohydrate Diet for people with IBD and do epsom salt sitz baths, eat healthy, etc. etc. and since the Crohns has been in remission (as long as I stick with the diet 100%), that also helped my fistula heal. I prayed a lot too and that is why I call myself Hope4 because I hoped for healing of this fistula with seton. It can't close with the seton in there and I felt like a prisoner. But just over a week ago (a miracle to me) almost 2 years, the seton feel out. It was perfect. Perfect timing (although I wanted it all the time) and I believe it has healed 100%. It's so weird. I am still sort of in shock. I can't believe my nightmare it over. And with no real help from anyone except my faith. So whatever you decide you should consider the diet, and maybe the seton. The seton gives it time to heal but again the docs wouldn't take it out because I am a person who has crohns. But it's out anyway, thank God!

 

[Raynedark]

Thank you for the welcome and advise everybody.

Hope4, I've looked into the Specific Carb Diet, but it seems really hard to stick to and possibly quite expensive to maintain. I'm a vegetarian and any dairy sets off my inflammation right now. I looked at the book "Eat Well Feel Well" and very few of the recipes in there appealed to me or were an option for me. Can you point me to a good website or book about this diet?

Thanks,
Rayne

 

[hope4]

Rayne,

I am not sure if u own the book, Breaking The Vicious Cycle, but if u dont u have to get it. Bits and pieces of information on the internet regarding this diet is okay for basic info but one must read the book. Each person has to cater this diet to fit them as an individual amd when a person does this the diet works. This diet is a way of life. Its only hard in the beginning. I have been on it for over two years. I feed it to my family. I personally could not do the special dairy yogurt in the book. It caused me issues. Also i slowly ate the allowed cheeses only when my symptoms went away. And only small portions and not everyday. This diet is only for those who are deperate for healing. People who cant stand living with a disease and taking drugs. I was desperate! If u go to www.pecabread.com it will explain the most common mistakes people make when starting this diet. It also breaks the diet down in stages which is good cause the book doesnt list these stages. Also, Beakingtheviciouscycle.info is the main site. Believe me food can heal Crohns, but only done the right way. Eating healthy is not enough. I tried that too then started the SCD and in 30 days i was back ro normal. This diet has also helped others with the healing of their fistulas. Docs dont care or believe it, but i didnt care and i am better! God gave me this diet. It was the answer to my prayers. I am very grateful to the people who founded it!

 

[David]

Hi Rayne and welcome to the forum! I'm really glad you joined

I can absolutely understand your worry about the Remicade, however, that you have fistulizing Crohn's Disease makes me think that it may indeed be worth the risk. Most people don't understand just how serious fistulizing disease is so they have an emotional reaction when they see the potential side effects. Now, I'm not saying don't take the side effects into account, but it is imperative that you not only get the inflammation under control and heal the fistula but also heal your intestinal mucosa as well. Remicade does that very well. Give this thread a read as it describes some of the data of using a biologic such as Remicade in conjunction with an immunomodulator like 6-MP.

If the roles were reversed, knowing what I know and I just found out I had fistulizing Crohn's Disease I would probably try total enteral nutrition to see if that fixed things and if so, to partial enteral nutrition with a maintenance medication. If not, I'd nuke the Crohn's from orbit with total enteral nutrition, Remicade, and an immunomodulator. I'd also make sure that every one of my vitamin and mineral levels was not only within normal but actually within optimal ranges. Just me of course

I'd like to reiterate that the state where your disease is, is serious. Thinking both short and long term, you want to get it under control and fast.

Please don't take this as me saying you absolutely should go on Remicade. I just want you to have that additional perspective. In the end, we're going to support you no matter what decision you make. We just want to educate you so you can make an educated decision