Hi Genius, I had a very similar journey to yours except during my 30s. I'm also from NZ (Wellington), and I recently (3 months ago) completed J-pouch takedown after 4 years of UC and six months with...
Hi guys, 5 days later and the surgery is behind me. What a roller coaster of a week. I'm still in hospital, and they tell me things are going very well. It took 7.5 hours, done laparascopically....
Thanks all, I'm leaving for the hospital now. Yikes! See you in a week...
Well team, my UC problems will soon be ancient history as tomorrow I'm having a total colectomy as step one of a two-step J-pouch procedure. I'll start the prep soon. Can't believe after four years...
thanks for the thread, ill be having mine soon, and its great to hear your story...
Yes, he recommended going to 40mg. I've since moved to 40 and seeing some improvement, hoping it continues....
:-) I wish I wasn't here! I should have had this damn thing out by now, but they keep pushing me back. Day two at 30mg. Doing a bit better I think. Fingers crossed it does the job or it's 40 tomorrow!...
Thanks suzy, I'm going to do just that. 30 from today...
Thanks Dan...
Surgery date still unknown at this stage, but they have told me June. Being down at 10mg was considered acceptable by my surgeon. Thanks for the advice re: C-Diff. Will keep an eye on things. I am...
Hi all. I haven't posted in a while as I'd been doing pretty well. I've been taking Prednisone for about a year now while awaiting a surgery date. Started at 40mg and had worked my way down to 10mg...
I think any benefit or advantage realised through suffering mostly occurs retrospectively, in our case perhaps after achieving remission or having recovered from surgery. In my experience, when...
I don't get that impression. She is here looking for insight, after all. Good advice peeps, I have nothing to add....
Great news for your husband. I wish I could get my hands on that one, though another part of me is looking forward to being med-free....
Thanks guys. Yup, it's been a long hard road that I'm happy to be nearing the end of. Surgery is scary but I figure I've already been to hell and back a number of times so I'm ready for whatever else...
An update if anyone's interested. The Stelara study has been a flop, a complete waste of about six months. I didn't see any improvement at any stage. I'm pretty sure I didn't get placebo at Week 0,...
"If I could go back I would have had the surgery 5 years ago..." Thanks for this. I feel like I'll be cutting my losses pretty soon and going for surgery. I've spent the last 18 months trying drug...
Nothing yet Edit: Unless lots of additional gas counts :mad:...
Thanks for the advice. I'm almost only doing this to humour my doctor. I'm ready for surgery. Scared, but ready....
Interesting, I didn't know that. Something to remember when/if surgery comes. Thanks...
Why can't you drive?...
Wow I didn't realise your diagnosis had changed. I've read quite a few Stelara success stories for Crohns - worth a shot for sure. For me it is a last resort as the only biologic approved for UC here...
I don't know, all I could see was it was a 370ml IV bag. Hopefully the highest dose!...
I had my Stelara randomisation yesterday. I was concerned about receiving Placebo but last night I had the familiar post-infusion sweats and today feel very much like I used to feel the day after a...
I decided on a month based on mostly anecdotal evidence. Some people claimed remission within a week or two. When I saw no difference after a month I tapered back to 3,2,1,0 per day over the...
Resuming smoking has a good chance of inducing remission seeing as you're a former smoker, but you'll need to keep it up for a while. I researched this heavily some time ago and tried smoking four a...
The study has two doses. From memory it is either a fixed dose of 130mg or a body weight dose of 6mg/kg. For me that would be about 360mg. Determined by lottery of course. The induction doses are all...
Thanks for the info Keith. No doubt if it works for me I'll be back in here raving about it...
I feel similarly - I've spent enough time already waiting for things to work. And then there's the chance I'll get the Placebo, which would be just my luck. There are also some people on Reddit...
Hi, Unfortunately Remicade stopped working so we have discontinued. I'm currently in a fantastic Prednisone "remission" which has given me my life back but we all know how that goes. I am enrolled to...
They've been giving us the wrong stuff!...
I'm not really someone who brags about my own successes but I feel like I should share my experience in remedying a long-standing sleep problem that caused me no end of grief during 2015. For most of...
I've been on Azathioprine for over a year now and for me there is no "burn time" when it comes to being out in the sun. Burn time starts immediately for me. Otherwise I don't notice any side effects....
Did your previous diet include wheat (gluten) or dairy? Several members have been talking about diet mod for quite a while now. Potatoes have been encouraged for their resistant starch.[/quote] No...
I just realised I never replied here. Sounds like you were much more disciplined than me. Looking back, I'm certain that all of my problems were caused by a nasty chicken dish that I drunkenly...
I recently figured out my sleep problem after over six months of similar circumstances. I would go to bed at 9-10 and then be up at 12, 2, 4 and 6 every night like clockwork, despite being...
Its been called Vivomixx here in NZ for a while. I haven't noticed any change in taste. Still taste like sh-t to me!...
It's the prednisone that's messing with your head. For me it means anxiety, paranoia, uncharacteristically negative thoughts and a very short temper....
If I recall correctly mine was 4.9 before I got moved to four-weekly infusions so yours is a good score I think...
Harsh. The guy (or woman, w/e) has had 25 FMT infusions, been on SCD for 6 months, is on Uceris and you imply that is 'barely' doing anything at all. The SCD alone is more than I'm prepared to do....
Is this even a serious post? If you have Ulcerative Colitis, are barely taking any medication, and all you're doing is farting, count yourself lucky....
I love butter. Don't hold back. Try to make it organic, grass fed and all that...
Everything is funded here in NZ. I just pay a nominal prescription fee each time. $100? Absolute max...
What did you eat there? Were you careful of the street food? I went to Thailand in the early days of my UC (2013) and got very sick from making poor food choices....
You can get it here http://www.mynaturalhealth.co.nz/brands/view/vsl-3-now-called-vivomixx Edit: I just realised how old this post is. It's a probiotic, the strongest available and has been shown to...
Hang in there, you are not even past the loading phase. It can take a while to start doing its thing....
Get the test, but try not to freak out about antibodies. If there's one thing I've learned it's that even with a "wonder drug" like Remicade, the road to recovery can still be a bumpy ride....
I have tried 97% Curcumin a couple of times but both times it increased my diarrhoea...
When it's working, it works very well. It can take a while for the doctors to find the sweet spot of the right frequency/dosage for you, so it may not be plain sailing right away (though for some, it...
You have to be really blunt with them. Tell them you often wish it was cancer, because then maybe they'd be more understanding. Ask them if they even know the name of the disease you have or anything...