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Yes! I feel like I've been waiting for the last 3 years! First for a proper diagnosis, then for a resection, then for Humira to kick in, then for a double dose of Humira, then exactly the same scenario for Infliximab, then waiting to qualify for a medical trial and my next wait will be to see if...

I did the fodmaps elimination diet and lucky for me I had no reaction to gluten. Like you, toast is my goto food when things are bad, so I wasn't too surprised. The trick with fodmaps is not to avoid all of them but to figure out which of the fodmaps (if any!) give you issues. TBH I didn't...

Fwiw, in NZ AST is not part of the standard blood tests I get. ALT, Alk. Phosphatase, Bilirubin, Albumin yes but no AST. Vit D is only free when the hospital orders it I think, I've had to pay for the one time I got the GP to order it.

I have zero side effects from Remicade but I'm allergic to Aza which gives me extreme anemia so there you go. You won't know until you try it but if you do go for remicade and it heals the fistula's I suggest you do a lot of research and think long and hard whether you want to risk going off it...

I feel for you! One thing you might be able to try is to be part of a medical trial. That's what's next for me once Remicade fails me, which is likely to be soon. I think there's a list somewhere for medical trials but you could ask your GI if he/she is part of any or are aware of any in your...

Have you tried psyllium? I take a teaspoon full stirred through a glass of water before breakfast in the morning most days. It works to thicken up things a little and it's great for that. Do be aware to not take medications within a few hours as they might not get absorbed as weel as they should.

Hi Ron and others, these kinds of programs only work in the US sadly. No idea why, but it is what it is. You can sometimes get help from the manufacturer on compassionate grounds but that is also just temporary.

Hi Danielle, I don't dragon boat but I can tell you that any exercise that involves stomach muscles is no good for me. And the same goes for any intense excercise, it just doesn't do me any good. I walk in the hills and that's really all I can do safely. Sorry! It doesn't have to be the same...

Well, I did go on the higher dose and it seems to be working! Still not totally fine but certainly better than I was. The downside is that this higher dose is only covered by the health system for 3 infusions, then it's back to the standard dose. So here's hoping that this will be enough to...

Welcome John, sorry you had to join us! My history is similar, UC for 20 odd years and now Crohn's. My diagnosis was changed because I kept having blockages and it turned out the disease had moved from my colon to my small bowel. My colon is now completely clear, go figure! I almost had the...

I just think why??? What does it matter which particular faith someone has? Do non-Christians give worse advice? Are non-Christians allowed to contribute to the group? Etc. etc. What will a Christian only group add, over and above the already existing prayer and spiritual support group?

Yes, I'm glad I had the surgery. Like you I had trouble eating due to strictures and I was very pleased to avoid emergency surgery which would have been inevitable if I hadn't had the planned operation. This way I could make sure I was as fit as possible and could also choose the surgeon so I...

Absolutely! I just avoid the ones with seaweed as that doesn't seem to digest that well, but all the ones with white rice and fish, yes. Just be aware that you could be sensitive to the vinegar they put through the rice, I am for some of them so I only go to certain sushi shops.

Don't forget that when the strictures are gone you can do something about the D! I use psyllium to thicken things up when I don't have strictures and that works quite comfortably. If I'm going somewhere far from public loos I use immodium or codeine, both give more than a couple of hours...

Has anyone mentioned anemia of chronic disease to you? Not that that diagnosis helps much as it will only resolve of the underlying condition improves, but still good to know what you're dealing with. I had it for a while and iron infusions only made a minor difference and for a very short...

Yes interesting question! When I was initially diagnosed with UC, it was easy as the inflammation was clear to see throughout my colon. Since then I've had many years of issues that were much harder to pin down, despite changing GI's a few times and the only reason I was finally (re) diagnosed...

Are you sure your daughter would be on 2 doses a week? It sounds very unlikely to me to start that way. There are loading doses: 4 in one go then the next week (or 2 weeks, can't remember the details) another 2 and then 1 every 2 weeks is the normal schedule. I've never heard of starting on 2...

I found the only thing that helps is keeping the stool soft. So not hard but also not watery, that can be just as bad. It's hard to achieve but psyllium or slippery elm can do the trick. Also rectogesic cream does help a little as does lidocaine cream.

I concur with the suggestion to use the syringes instead of the pen, big difference! I would also try, at least once, to use the belly as I too found that way less painful. Just pinch the skin and inject into the fold between your fingers, but that's easier with the syringe than with the pen.

Yes I always take Pred in the morning or even in 2 separate doses. To do the switch you coud take your last evening dose a bit early, then do a half dose the next morning and the other half early evening. Then the next day the whole dose in the morning. I've done it that way before but as I'm...