New to forum. glad to find a new resource.

Just wanted to start off by saying that I am grateful for this forum. So much information and so many different stories. A little about me. I was dx in 1996 with crohns disease. I was on a variety of medication which didnt seem to help until my first sm bowel resectioning in 1998. Dr ended up removing 2.5 ft of small bowel. I was relatively symptom free with the occasional stomach ache or pain but nothing to write home about for the next 10 years. I took supplements and followed the SCD diet for a few years which seemed to keep me in a stable health position. At around the 10 year mark I developed a peri-anal abscess. It was drained and has since turned into a fistula which to this day has not healed. The drs say it is very low so there is a high risk for incontinence if they would try to fix it. It was very burdensome initially but at this point i have had it so long that it is just part of my routine. cleaning it and changing the gauze pad are just part of life. I had to have my second res-ectioning 3 years ago. Since then I have been feeling relatively good. I have been relatively lucky in regards to my crohns. I dont take any medication and only have the occasional flare up. I do live with the fistula but that is just part of my life now so I try not to complain about it. I have recently felt like I am getting another abscess on the left side- which scares me. I would like to avoid getting another chronic fistula. Going to talk with my dr asap about it. I am currenly a nurse and want to start traveling so I am trying to get my health to the best spot it can be before getting on the road.

My reason for posting now is die to a few different questions that I have:

Are there people out there that are not on medication? How do they keep their crohns disease under control? My dr has suggested remicade in the past- which i am not against but just seems a little extreme to me at this point. My disease is relatively mild.

people with fistulas- how are you handling the day to day? I have recently felt like I am getting another one on the other side and want to prevent having another chronic fistula but am not sure what to do. any suggestions?

Has anyone tried LDN? any success?

Thank you for taking the time to read my post. any advice or feedback would be greatly appreciated.

Welcome to the forum. :ghug:
I had recurring fistulas, and when I got six all at once, I went on Remicade. They healed up within a month. I haven't had any since. I agree with your doctor. If you have fistulas, your disease is not relatively mild. It's rather serious.

Thank you for the reply. I am glad that you found success. I agree that the fistula is serious. I say mild because besides the fistula I really don't have any other problems. Although I know how fast the body can change with crohns. I do think remicade could help but I am just worried. How long did you have your fistulas before you started remicade?

I want to second the above - not only you have fistula, you already had 2 resections; this is not a mild Crohns by all means, even though I do not know the formL definitions. What I call mild Crohns is someone who had it for 20+ years without medications and without surgery, and able to manage semi-normal lifestyle.
Another thing to consider is that I wouldnt look at Remicade as an extreme mean; it just suits you situation the most, since it has the potential to heal the fistulas ! Have another talk with your doctor, see what he thinks, and then decide.
Managing Crohns by diet alone end up bad in many cases. You may try, but if active inflammation persists, you'd better consider adding medications.

Feel well

I had a mass of fistulas that were draining inside for maybe a year and a half. The surgeon described them as "a bowl of spaghetti", and that there was nothing he could do. They closed with a combination of cipro, pentasa and azathioprine, for six months. Then I got six more that broke through the skin, and agreed to go on Remicade. It gave me my life back. Not everyone has the same outcome, but it seems to be the thing that heals fistulas the best.

Tuff- I can not even imagine what you went through. Sounds awful.

thank you both for the feedback. I am going to email my dr today.

Thanks for sharing your story. I just posted my first thread on this site today. I was diagnosed with Crohn's 8 years ago and was on Pentasa. I have been off all medication for 4 years. I considered my Crohn's to be mild, with an occasional stomach ache or short bout of pain. Just recently saw the CR doc who mentioned a fistula but have to see the GI first, then back to the CR doc.

The CR doc mentioned going to Humira or Remicade. I didn't think my Crohn's would have warranted that but I'll consider it. I will ask my GI if I should try Pentasa again but at this point, I'm still trying to come to terms with having a fistula and hearing what my options are.

Can you share anything more about how you care for the fistula? You mentioned cleaning and dressing, is this a daily thing?

My fistula drains just enough that I need to cover it up. I take a 3x3 gauze that is folded in half and tape it to my skin so it catches the drainage. I change it throughout the day to keep the area clean and after bowel movements. I do my sitz baths as well, although not daily.