Crohns and upcoming seton placement

[Zues]

Looking for some advice really.

about 3 years back my doctor finally diagnosed a fistula after months and months of antibiotics due to constant abcess and referred me to colorectal dept at hospital. Finally after 9 months waiting for appointment they took one look said “you might have crohns” and sent me for MRI’s, and other tests.

I then had an IUA for possible seton placement, which unfortunately they couldn’t do due to as realised I had extreme inflammation and was bleeding quite badly and said I had crohns and referred to Gastro.

fast forward months and months, more tests and MRI and had said diagnosis confirmed. I was put on Infliximab and Azatrioprine, but unfortunately didn’t tolerate the Azatrioprine. advised to try again with a smaller dose, but had same reaction, so it was discontinued. I have been on Infliximab for 7 months, and now they say it’s not working as still have inflammation and generally unwell. They have now batted me back to colorectal to try the season again. Only this surgeon wants to place a permanent seton for life opposed to the other surgeon who said it would be a tightening one with a view to healing.

im distressed. Don’t want a permanent one. When I told surgeon the other one said about tightening and removed after a year he look confused and said that’s not what they do? Google tells me otherwise!

I don’t feel as though I can question them, as I’ve already upset the IBD nurses as they keep saying different things, then being rude when I bring it up. They’ve made me feel like a nuisance and last phone call I cried for two days after as they really really upset me with their uncaring dismissive attitude.

so (breathe). My question is, does anyone have a permanent seton? I’m worried about the continuous leakage. What could happen if I don’t have it done?

still trying to come to terms with diagnosis and associated health problems.

thanks all for reading

Oof. You poor thing. DS has Crohns and recurring fistula, but the approach has been to control the Crohns as that will help heal the fistula. There are many more medications available if Imfliximab isn't working for you. DS is now on his 5th biologic drug and is fistula free and doing well.
Talk to Crohn's & Colitis UK, they can get you expert UK based advice. Ot help you figure out how to swap to another hospital, you might need a more expert one.

share.google/kNgpzJU66RDjUrAXe

so sorry you are going through this. It doesn’t sound like they have tried many different medications, so maybe there is more help to be had.

I don’t have direct experience I’m afraid. DH has crohn’s and when it’s really bad he does intermittent fasting and the carnivore diet until the inflammation calms down. His doctor prescribes mecaptapurine and pentasa but he finds the lifestyle changes more effective.

They are awful for making you feel like a nuisance. they arent volunteering for free - it’s their job to help you, which they get paid to do. Don’t let them make you feel worse. if they are rude that is their failing not yours.

Thanks. That’s what colorectal said, to get crohns under control before they can treat fistula. Aparantly Infliximab is the best drug and Gastro said it would shrink it. It hasn’t. My bad reaction to Azatrioprine was chest pain, back pain, painful tongue and swollen glands to the point I could hardly swallow or catch a breath due to chest pain. That started 3 days in. I tried to persevere for another week until partner and mum stopped me. Rang IBD, they had a meeting and noted that I had sore throat and general malaise and said my symptoms were very rare and to try again! same thing happened. My folic acid levels dropped from 48 to 4.5 in two weeks and also my vit D levels. Doc prescribed 4 months of each to get them back up with monthly blood tests. Last test IBD done didn’t cover those so when I questioned it they said why would they do those tests? Reminded her why and she said we don’t test for that. Only every 6 months. I said YOU said to do tests! So rude to me. They also mentioned med change, and when I asked again she said who said we would change? Like I made it up. I said you did. It’s in your last letter from last meeting. Anything else? She kept saying. Also said if I feel that bad go to A&E. Honestly couldn’t of cared a stuff. I’m never talking to them again!

I do that with the fasting. Just to try and stop the constant blood and mucus and in the loo 10 times a day. Tired all the time, anxious, spend days and days sleeping and being thoroughly miserable. Hair is falling out, rash on my face, confused. In a bit of a state really. I’m learning what not to eat and eat only small portions. Bowl size. If it don’t fit I don’t eat it! No caffeine, dairy, processed meats. Actually been living off salads for the last 2 weeks and have actually enjoyed it. Not heard of the carnivore diet. I’m going to google that now!

Zues would your family support you with a complaint to PALs? That's shockingly bad responses from the IBD nurses. If it was DS id also be pushing for a second opinion on the surgery.
Im not in the UK but found this about Martha's law - it might help get you the help you need.

https://www.england.nhs.uk/patient-safety/marthas-rule/

Sadly diet might help ward off some symptoms but it's not going to help you get better properly. You really have to get someone to help you push for a proper review of medication.

Thanks for that. I don’t think I could go through the drama to be honest. And it would Probally make the whole situation worse. The IBD nurses don’t like being questioned, I’ve learnt that. I think any complaint would stir up a hornets nest.

only seen a Gastro consultant once, back in September. She said see you in 3 months after you start meds. Which was in December. So should have gone back in March. Response from IBD? Well they are very busy. Some people have to wait over a year! So they really don’t care. Pushed me over to surgery for seton so they don’t have to deal with me. But that won’t help the crohns will it. I’m debating whether to change my docs to where my mum lives in London and try that hospital instead. Don’t know how simple that would be though as it’s about 30 miles from me so might be awkward travelling to get tests and things done. Not driving at the moment as poorly so don’t actually go out at all

I’m leaning towards cancelling procedure and just getting on with it! I really don’t want that hanging out for the rest of my life!

Can I strongly encourage you to find better medical support. Untreated or undertreated Crohn's can become very serious quickly.
Do go to A&E if you feel more unwell or start getting stomach pains.

Poor you, I really feel for. I also had horrible azathioprine side effects - bleeding gums and coldsores started on day 4! I’ve never had fistula with my Crohn’s, so I can’t relate directly, but I wish you all the best and I hope you get the support that you need soon.