Anyone TTC and has crohns?

[Justme1234]

Hi all
Just wondered if any of you have crohns and have had to come off meds before being allowed to try?

I have just come off infliximab (remicade) after 6 years on it as docs won't let us TTC whilst on it.

If you have crohns nd would be happy talk about how you are coping off meds and TTC, I would really like a buddy!

Xx

 

[lisa1980]

Hi,

I have crohns but am in a slightly different situation in that I've only recently been properly diagnosed (I had UC for years then it seems to have transformed to crohns).

I've had problems with fistulating disease and have had to have surgeries. I'm currently waiting to start remicade after azathioprine did nothing for me.

My consultant and team are happy for me to be on remicade and TTC (apparently there's some research going on currently in order to license it for use in infertility!) but I'm going to wait and see what happens. We were hoping to TTC next year but it's not a fixed plan and my disease is far from controlled at the moment so I need to play it by ear a bit I think

How are you doing off the meds?

 

[Justme1234]

Hi
Thank you for your reply! I would never wish crohns on anyone- but it is nice to have someone that understands,

I wish my doc would let me stay on remicade! I assume you are in America? I googled the life out of remicade and pregnancy before talking to my consultant- and most of the advise that is given in the US is to carry on with remicade as it is better for the baby than not getting enough nutrients......but clearly that advice has not made its way across the pond yet!

Like you I had fistulizing crohns,(and surgeries) and remicade has been the best thing that ever happened! I went from horribly poorly to happy and well in about 3 weeks- after trying every drug on offer and them not working - I really hope it works as well for you.

Anyway, that was a bit of a ramble - although I have come 'off my meds' - due to the fact you have infusions every 8 weeks with remicade, I am actually only at the 7 week post infusion so I haven't felt the effects yet......that'll be next week! Fingers crossed it will be ok but it is safe to say that I am terrified!!

I really hope you get your remicade soon - fingers crossed it will work miracles for you x

 

[lisa1980]

Hi,

No I'm in the UK My doctor is at Guy's and St Thomas' in London.

It seems to be down to the personal opinion of the physician really, as there is limited evidence about what's best and it probably depends on the individual circumstances. I've heard lots of stories about people going into remission on remicade and then stopping it and staying well for years. Hopefully that'll be the case for you

Apparently remicade doesn't cross the placenta until third trimester so I suppose if you really became ill off of it there always the possibility of using it again early on to get you back to remission...?

Crohns sucks. You can't win with it really as there are risks to treatment but risks of not treating (plus AWFUL symptoms!) I'm really hopeful about the remicade, I've heard great things about it so I really hope it works for me.

Are you TTC now? Will it be your first?

Lisa xx

 

[Justme1234]

How weird, I'm called Lisa as well!!!
We are TTC already yes and it will be the first....first of a couple I hope!

Crohns does suck! Am so surprised you are in the uk and being allowed....might need to use that to plead with my consultant!

When are you having your first dose of remicade (known in my family as 'mouse juice' cos of what it's made from!!) ....it's synthetic mouse stuff tho so don't freak out!!

Xx

 

[lisa1980]

Mouse juice!

I had my first infusion today. It was fine but I didn't realise they make you stay for monitoring for 2hrs after it (and it took 1.5 hrs for them to get it ready) so I was there for AGES! Luckily I had bought my kindle!

I don't feel any different yet but I suppose I wouldn't expect to so soon.

TTC is exciting...I can't wait to try again. I'm crossing my fingers this stuff works so I can get well in preparation

How is it going off meds? Are you still on any meds at all or have they all stopped?

Yay for another Lisa

Lxx

 

[Justme1234]

Yeah it takes a while for them to give it to you- when I first started on it the infusion took 2 hours then you had to stay for 4 hours after - they let me out about 15 mins after I have it now....not that I will have it again now ....boo....

Not on any other meds with it - I was when I first started (pred) but I tapered off it and always refused methotrexate and couldn't have azathioprine as it make me really ill.

So I am med free!!!!! For the first time in about 11 years in all!

Hopefully you will feel the benefits in about a week or so....kicked in about 2 wks post infusion for me....I remember sleeping through the night (not needing to get up to the toilet or being woken up with the pain) for the first time in years..... Very weird feeling....was quite confused when I woke up!!

Keeping my fingers crossed for you xx