Reintroducing myself

[blaqmerc]

Hi everyone,

I had an account here a while back, but have lost all the details for it, and it's been a while anyway, so wanted to reintroduce myself.

I'm J, from Melbourne (Australia) and I have a partner with Crohn's, and we have two small kids.

I'm back here because after a while of not too many flares, my partner has been unwell for around 6 months, and has gotten to try out most medications. He recently had his sigmoid colon removed, along with a mass of scar tissue the size of a grapefruit :ywow: and unexpectedly came out of surgery with a temporary illeostomy.

Unfortunately, the surgery didn't help, and the crohn's moved to his large bowel within about 2 weeks of surgery. Well, it helped in that he no longer has stricturing or anything, but yanno, he still feels like shite. He's in hospital at the moment, waiting to see if it will settle down and will probably be starting on infliximab (I think called Remicade in UK and US?) in the next few days.

So I'm here for any tips and tricks for his Stoma, explaining everything to our kids (who are 1 and 4) and experiences with infliximab so that I know what to expect.

Oh, and he also has a mental illness so I am his advocate for most things, and I have found that having heard other peoples personal experiences is more helpful than all of the technical info, so hopefully that's something that I can get here.

I hope you're all nice :wink:

J

 

[DustyKat]

Hi J and :welcome:

I'm so sorry to have missed your post. I don't know if there was a glitch in the system as a number of newbies seem to have been missed.

I can't help with the stoma and Remicade but I will post a couple of links -

http://www.crohnsforum.com/showthread.php?t=4544

http://www.crohnsforum.com/forumdisplay.php?f=46

I do hope are stay around as there are many wonderful people here with knowledge and experience with Remicade and stoma's.

How are things going for you now? You certainly have your hands full with caring for your partner and two little one's as well!

Take care,
Dusty

 

[Nyx]

I have a stoma, and you can find alot of info about that in the stoma subforum in the General IBD discussion board. Any questions, feel free to ask.

 

[blaqmerc]

Thanks everyone

Just a quick update, A is still in hospital. They have him on the Remicade now, but it hasn't worked. They found out a week or so later that he actually has CMV in his gut, so the Imuran and Remicade made him much sicker than he would have been otherwise. It's a bit sucky at the moment, he is on cytotoxic meds to treat the CMV so I can't take the kids to visit either

As well as his mum is quite unwell, and in respite care so the kids and I have been visiting her, and have adopted her cat.

I'm investigating using human milk to treat inflamation as well, which looks quite promising for mild flare up especially.

Well, you all seem nice so far

J

 

[DustyKat]

Hey J,

Whoa, that does suck. You must be run off your feet!

I hope things turn around for you real soon so you can catch your breath.

Keep us posted on how A is doing,

Take care,
Dusty

 

[Dexky]

Hi J, sorry you were missed. Welcome!!! Glad you came back to check. I'm sure you thought we were a bunch of a-holes if you've been checking regularly. We aren't, I promise. Good luck with A, and all the other that's going on right now.

 

[reidyjo81]

Hi,
No advice on stoma I am afraid but wanted to say welcome anyways and hope you and your family aren't having too much of a hard time
Jo xx

 

[Astra]

Hi J
and welcome

Yes we are really nice here, so sorry we missed you first time round!
I have no experience of Remi or stomas but lots of info on the boards regarding these.
rooting for you J, you've got your hands full sweetie!
just take time out for yourself too before you hit the deck with exhaustion, I've had a sick husband when my kids were younger, hospital visiting is no fun!
lotsa luv
Joan xxx