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Yeah the CRS is supposed to call me today. im going to ask her about an MRI. It seems that would make a lot of sense at this point.

I haven't talked to an OB recently. I was actually pregnant last summer (unplanned) but we ended up having a miscarriage. At the time the OB wanted to do c-section and she basically said its not ideal to have the setons in with a pregnancy. But I'm conflicted because I don't know how long...

I had to see the nurse practitioner. She said it is probably the same fistula but that it could be something separate. She just wants to watch it. So we will see! @Mandalee you say you went off all meds and they never came back? That's awesome! Are you doing anything to treat them like diet or...

So I have had a fistula for a year now- four setons- two which drain a lot and two which are about to be taken out. I have found a treatment that has been decreasing the pain and drainage and last time the CRS looked she said it's getting better. Anyway; today I noticed a new opening that is a...

I have had an enlarged groin lymph node for a few weeks (maybe longer- I just noticed it a few weeks ago)- I talked to my general physician and she looked at it and felt it and said it was soft, moveable, etc. so not concerning. Plus, I have a fistula that had been draining for a year- the lymph...

And more info: I still would consider myself to know very little about how it works but this is my basic understanding. LDA shots are a combination of tiny doses of lots of different antigens-- they can be airborne allergens, foods, bacterias, yeasts-- each shot is tailored to your specific...

@polar bear I noticed a difference the day after the shots. Within two days, I had almost no drainage. But then for the next three weeks it was a little bit of a roller coaster. Some days would be great and then some days I would basically feel like I was flaring again. This is apparently common...

Yes that is it! My fistula was so bad... I had kind of given up on everything and really didn't believe this was going to work. I was ready for an ileostomy. This treatment is more on the "natural" end of things, but that doesn't mean it's not super powerful. I had done my fair share of natural...

I have tried Remicade, Humira, etc and have spent most of the last year in pain. I've finally found relief through a treatment called LDA, low dose immunotherapy. I can give more info if you want! I know, like everything it may not work for everyone, but it's kind of been a little miracle for me.

I have had a fistula for a year now. I have four setons (two which are likely to come out very soon,) and I have finally found a treatment that is working to heal it all. Last summer I got pregnant. We ended up having a miscarriage, but at the time since I had the fistula the OB was planning to...

First of all, I know how frustrating it is when people have something (especially something alternative) work for them and then act like it will inevitably work for everyone else. So just a disclaimer that I am well aware that this may not work for other people, as many things have not worked...

Atlanta

Btw I'm open to a temp ileostomy

I am looking for a GI for a second opinion in Georgia. I have fistulizing Crohns, but will not take biologics now due to several reasons including that they cause me psoriasis and I already have an immune deficiency. I know biologics are often what doctors want to try before anything else so I'm...

@abbynormal I'm 24 too! Ever since my Crohns got out of control last spring I'm always having to cancel on everything and me and my husband and toddler rarely get out. I've just learned the hard way that you have to be honest with people from the start that you can't really commit to anything...

And I've also found its good to just tell people straight up. I always say "I had this massive crohns flare which caused a fistula, which is when your digestive system forms a pathway to somewhere else. The fistula led to an abscess which causes tons of pain. They had to drain the abscess and...

I know surgery is scary- and a year ago I never would have considered it. But now it sounds so much better than the pain I've dealt with for so long. And many people have many positive stories about ileostomies on here!

Yeah I originally had mild to moderate too. Then many years later everything got out of control. From what i understand, biologics are somewhat stronger than the standard immunosuppressants. I've never been anything but Pentasa, steroids, and biologics. Not sure what the next step is for me! I...

Unfortunately I have found I pretty much can't exercise with active fistulas/setons. walking is okay if they are draining and hurting less, but every time I try to do any sort of weight bearing exercise or Pilates or anything I suffer for it. I've just resolved that until these things heal you...

@abbynormal what I mean by biologics are the TNF-blocker drugs like Remicade, Humira, and Cimzia. I'm surprised someone hasn't encouraged you to get on them because everyone says they are the best (or even only) thing that works for fistulas. But they can come with a whole host of scary side...