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FMT’s again or surgery after 4.5 year remission??

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Ulcerative Colitis
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Posted 3/18/2019 3:44 PM (GMT -5)
Hello and I hope you all have been well. I haven’t posted or even been on this forum in years because my son was doing so well after FMT’s. We did the procedure in 2013 and he was symptom free for over 4 years. For the past year the symptoms have slowly returned and he’s talking about having surgery and just being done with all of this colitis. I’m a firm believer in FMT but he has to make this decision. He hasn’t been on any maintenance meds during his remission and was able to eat whatever he wanted. We currently began doing FMT at home, 3 days ago and I’m praying that it will help calm things down a bit. Im torn on how to help guide him; should we consider medication, surgery or continuing with the FMT???? He’s tried Asacol years ago and that’s about it as far as medication is concerned. He’s never tried changing his diet for an extended period of time and I doubt he ever will. I’m just afraid that he’d only trade one set of problems for another if he decides to have the surgery. Looking for help on this issue!!
Posted 3/18/2019 4:35 PM (GMT -5)
I am not sure a surgeon would consent to surgery unless meds (or FMT) was tried again. Some sort of maintenance med (or anti-inflammatory food) should have been used.

The issue surgery is a last-resort and if there have been years with no meds, it is unlikely a surgeon would see this as last resort.

Many here are happy with surgery, but a few not. Many who had surgery report no complications, but some have pouchitis. Also with any major surgery there is some risk of death due to anesthesia, infection, or other complications.

I understand someone feeling exasperated and thinking about a procedure that is supposed to be a cure. But It is a bit rash if your son is seriously seeking this at this time.
Posted 3/18/2019 5:01 PM (GMT -5)
DBwithUC
I agree that surgery is a rush decision to make. What would be a good medication to start with? Asacol and Lialda didn’t do anything for him and potentially caused his pancreatitis back in 2011
Posted 3/18/2019 6:28 PM (GMT -5)
Hi,
I'm sorry his remission is ending for now.
I hope you don't mind I'm curious about the procedure that gave him remission,and have questions .
Was his transplant originally given for c-diff or to stop his flare?
How many transplants and how long in between transplant until he felt remission ?

My daughter was about the same age, it's been 10 years.
Some years of remicade and some 6mp.
They are old enough to share their thoughts
Maybe the original transplant dr., or a gastro you use now, can have a discussion about options with you're son and you. Just a thought.
I hope he feels better fast.
Hope you don't mind the questions.

Thank you
Posted 3/18/2019 10:50 PM (GMT -5)

herbgarden said...
DBwithUC
I agree that surgery is a rush decision to make. What would be a good medication to start with? Asacol and Lialda didn’t do anything for him and potentially caused his pancreatitis back in 2011

If still UP then an enema or foam. If spreading, and mesalamine bad for liver, then it is either the thiouprines or biologics, likely Humira.
Posted 3/19/2019 9:12 PM (GMT -5)
When I was first diagnosed a few years ago, I thought "why doesnt everyone get surgery and get rid of this darn disease?"

I've since gotten smarter and realized the scope of this surgery. It is a big surgery, where things go right for most people, but a lot of problems can come up. your 20 year old son wants to live his life and not have to think about the disease and in a perfect world, surgery could give that to him. however, as others have said, a lot of complications can occur and i'd hate to see him close the door on a number of other treatment options before resorting to this roll of the dice surgery.

if he doesnt want to do FMT again, there are a lot of good medications available. he could even do the FMT again, hopefully get back in remission, but this time take a good maintenance drug that will help him stay in remission longer. if he is insistent on surgery, first take him to a surgeon to talk with him about what this entails. my mother did that with me and it made me rethink my thoughts about surgery.
Posted 3/20/2019 8:25 AM (GMT -5)
I do not believe any certified colorectal surgeon would consider a patient for surgery, unless they've tried mesalamines (asacol/lialda), immunomodulators (azathioprine/imuran/6mp), and multiple biologics (humira/remicade/entyvio). You'd at least need a medical reason why those medications cannot be tried in you son's case (rare, but sometimes another health condition makes immune suppression unavailable as a treatment option). I can see why he wants to say "check please, I'm done" with UC. However, it would be considered to be an elective-surgery, and likely not covered by your health insurance, as it's not medically-necessary for him to have a surgery at this point. The surgeries can cost many hundreds of thousands of dollars, closer to a million dollars in the event of complications. There is many more options left to try, and expected to be failed before going the surgery route.

You said he has not been on any maintenance medications after the FMT, which seems like a big mistake to me. It's unfortunate he had a bad reaction to mesalamine. As mentioned, there are other meds to try that will not give him the same reaction. I would urge you to explore the medication options I mentioned, and talk them over with his pediatric gasteroenteroligist. There's always risks and benefits to treatment, not sure if that what worries you about meds (and why you've avoided them). Just because FMT worked the once, doesn't mean it is always his solution. If he's been medication free for years, it is very possible his disease has progressed in extent and severity and now needs much much stronger treatments going forward.
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