Crohn’s fistula - just aaaaargh

[IslandLulu]

I seem to have a rectovaginal fistula.

Desperately seeking any words of wisdom from anyone who has already experienced this.

I guess it's just me then.

Oh poor you ❤️❤️❤️ I haven’t got Crohns personally but my brother does and it’s a horrid disease. The fistula can be sorted so I’d be on to your consultant about it ASAP. So sorry I’m not much more help but didn’t want to read and run xx

Thank you Keg! I just wanted a reply so I don't feel so alone.

Yes, my consultant knows. But so far my diagnosis and consultations have taken place over the phone.

I'm told that my surgery is urgent, but covid-19 has resulted in a backlog of operations. I'm on a waiting list and it's pretty rubbish really.

In 1999 I had a bladder fistula which was repaired along with some bowel being removed. Together with meds I had good Crohns control for 10 years before it went pear shaped. Modern drugs have sorted a perianal fistula since, but have also had further surgery inc ileostomy and takedown. Am currently in the best health of my adult life. Aggressive fistulising Crohns.

Fingers crossed you get your op ASAP.

Thank you DotBall. It's great you are in good health now.

I've not (yet) been told a stoma will be definite. I've been on Infliximab for 7 years which I know is supposed to stop fistulas, but I guess it's no longer working well for me.

Still waiting for my face to face appointment and MRI.

In the meantime I'm showering several times a day to try to avoid infection.

Thanks both for your replies, really kind.

Island I was on Infliximab initially but was changed to Humira (now Amgevita version) after my ileostomy take down. Have been really well on it, so fingers crossed they can try something else if the Infliximab isn’t holding for you.

Don’t panic if you need a stoma, the thought is worse than the reality. If I needed to have one again I wouldn’t hesitate.

Thank you Dotball. I've had MRI now and am waiting for results which will hopefully give an idea of what can be done.

My consultant said rectovaginal fistulas caused by Crohn’s can't always be repaired.

I have a suspected rectovaginal fistula too. My anxiety is everywhere. Also have been getting symptoms in the bladder and they think it could have branched. Had mri 2 weeks ago and waiting for results.

2 weeks and still waiting? I'll be chasing my IBD team daily till I get a response.

I feel a little anxious too, but I know I need to be practical about this.

Best outcome will obviously be a total fix. 2nd best outcome will be a partial fix plus a new mindset in how to manage it. Either way, I will need to find the strength to just do it.

Good luck Sunny (what a lovely name). Holding hands with you till we get our results.

@Sunny200 Any news, Sunny?

The first line of treatment is going to be placement of a seton next week.

This is all so new to me. I'm feeling a little out of my depth.

Anyone have experience of a seton by any chance?

No experience of a seton but giving a handhold. Chrons is such an awful illness, I'm on weekly amgevita injections but feel I'm dodging surgery by the skin of my teeth. I really hope this brings you some relief

Haven't heard of Amgevita.

I've been told I'll maybe need to change to Humira which is self-administered, so might be similar to your meds, HGC2.

Thanks for replying. I feel quite alone.

Think humira and amgevita are of the same ilk, certainly administered in the same way. Chrons is a lonely illness an no one can understand how it feels, mind you it’s different for each sufferer so I suppose how can people understand x

Just realised, the pp Dotball already said Humira is the same as Amgevita.

Sorry, can't seem to concentrate these days!

I've had a seton for a week now. Seriously grim .

Until recently I'd thought Seton was a place in Devon.

How are you getting on now, @IslandLulu?

@SparklingLime Thanks for asking
I had surgery earlier this week and was discharged yesterday. It's early days yet, but I'm hoping it was successful. Fingers crossed!

Meanwhile, I am very sore.

Sorry for the confusion, I am the OP with a name change.

Crossed fingers for ongoing progress and a lessening of pain, @CharityPecksniff 🤞🏼