Still in hospital

Hi UB.

I'm not an expert on setons. What would happen if you removed them now?

If it's any consolation, I kind of doubt the Stelara would have made much, if any, difference over Entyvio. Your fistulas haven't responded to two biologics now; I don't think that's just a coincidence. I didn't know FMT could heal fistulas - it seems counterintuitive to me, given that FMTs are more effective in UC than Crohn's colitis. But that said, if there is solid evidence for it I would certainly want to give it a go myself.

I hope you can avoid surgery, but don't be afraid to go for it if it's the only viable option you have left. I don't see how you can continue to live with abscesses/fistulas and agonising rectal pain, regardless of what the Humira is doing for your inflammation.

I've fought for 15 years against surgery. Not sure how to change my mind. But I guess I have a new diagnosis. I'm not sure I can cope with an ileo. Not coping now.

That's what they are offering. 2 new fistulas growing. They will reconnect in 4-6 months but the unanimous thought is that the disease will come back warranting a permanent ileo with rectum removal. Go figure. My bowel is fine but seems fistulas are a whole other ball game. Easter weekend so nothing with her done. Buys me more time to figure of something with Dr Boroady

I feel stuck. Likelyhood of getting PG around stoma is 30%.

Yes. I've already tested positive for MAP with his colleague Robert Aiken. Boroady is doing neat things with fistulas & anti map. Ironic thing is that the hospital I'm stuck in is also doing a similar study. Sadly, no doc here seems informed. Or really cares. They just want status quo. Surgery can't even tell me if my butt pain will go with diversion. I do know I'm out of time. 2 new fistulas. I'm going to have setons removed as well. This is a horror. Please send cheese & onion crisps and all will be well

UB - if you are serious, I can send a few packets of cheese and onion crisps to your hospital. Dunno if that's allowed though.

Most GIs do seem extremely conservative. I can understand why to some extent: it's when all the conventional meds have failed that I can't see why they aren't willing to consider more unconventional treatments. Obviously you have to be careful of snake oil - but whatever else MAP therapy is, it isn't that. My GI actually was prepared to try a course of MAP antibiotics, even though he didn't have much faith in it himself: it was me who got fed up with the whole thing first and decided to go for surgery. But I'd been very ill for years, and just couldn't see going on like that for another 1-2 years if there was another way out. Also, I was steroid dependent, another factor in my decision to have surgery sooner rather than later.

UB,

Checking in on you.....

Sending healing thoughts your way and hoping for the best.

Clo

i am so sorry for what you are going through - it sounds like a nightmare and i really do not have much advice. i am sorry for that. but i am sending hope for some sort of relief for you
take care x

Still here. Day 28 I believe. Wifi is awful so hard to post.

NCOT--was teasing but thank you. Recently found a small store near my moms that's sells Walkers Crisps. I could live off them.

RHB 104 is being offered here. I don't qualify because of fistulas but desperately trying to get them off label. A temp ileo seems so radical with everything else that can be done. We are trying to organize a team meeting with all the players and my family to make a decision. For now the plan is to do an EUA at some point today or tomorrow. Surgeon will get a sense of where fistulas are at, drain any fluid/abscess & REMOVE the setons!! It seems logical to try that & closely monitor me to see how my rectal pain is.

As far as medical options....small medical study out of Montreal suggests some success with Stelara & fistulizing CD.

https://www.ecco-ibd.eu/index.php/publications/congress-abstract-s/abstracts-2017/item/p626-ustekinumab-for-the-treatment-of-perianal-fistulas-in-patients-with-crohn-s-disease-2.html

As far as MAP vaccine it's finally entered phase 1. A lot is happening. It could of course amount to little but there seems hope. I may still end up with temp ileo but need to have these conversations with my team first. I think I'd be will to try diversion while on RHB 104. Perhaps when they reattach my disease won't come back.

I'm a "difficult" patient, one that does not fit any mould, therefore should not be given status quo treatment without a plan for when things go wrong.

UB,

Just a thought.....with a temp ileo your fistulas might start to heal. (Most of mine are and no new outbreaks--except a couple and the RVF which refuse to heal....darn it!) The temp for me, if I can get and stay in remission, will allow a surgery to fix the fistulas all at once...so maybe it will help you.

I hope you start healing and feel better soon. I can't help but think those setons thru your body into panic mode and once removed your body will settle down....

Hang in there!
Clo

UB,

Thank goodness you are feeling better!! Small steps are good. You sound better...just more hopeful.

Those setons are evil for fistulizing Crohns... I am glad yours are out and you are healing. TMI here so if you are shy skip ahead.... There have been times when my BMs would be so paunful I screamed like a banshee....and the cows in the next field would actually stop and star at my house..or one time they all ran away like their tails were on fire!!!..Lol...so I hear you. Hang in there it does get better. (Too bad they don't make numbing meds for the anus/rectum. )

I was concerned when we didn't hear from you but I kept telling myself that you were ok and just unable to get Wifi...or you didn't feel like talking. I gotta tell ya - I was checking 3 times a day the last two days and I absolutely felt like I was weird or stalking....Lol... So when I saw your post I was so glad!!

Still on Remicade and methotrexate. My RVF has been burning and I think it is getting bigger. I have an apt. In 2 weeks to have it looked at. Very interested if your new meds help you....but won't be changing meds till Remicade no longer works for me. Knock on wood hope that doesn't happen for the next 10 years or more.

Maybe they will reconsider and give you the antibiotics. ..if you are going to have a reaction you are probably in the best place...

Dr. Calling will get back with you later.

So glad to hear you are doing better!!!!

Clo

One time when i was in the er for severe rectal pain the er dr squirted a tube of lidocaine in my rectom and that numbed it for a few hours. I dont know how safe it would be to do that over long term. Also i have an ointment that consisted of nifedipine.3% and lidocaine 1.5% made with petrolatum that i apply when i have fissures. It has lidocaine in it so it numbs the area. I also use it when my hemorrhoids flared up.