General and medical allow up to 2 pre existing conditions including Crohn’s or UC. There are limits to what they will pay out. It’s on my list for when I am well enough to work more hours to be able...
Well no joy sounding out my GI today as he has delegated the clinic to his trainee and she was running an hour late. The excellent news though was that my last stool test has come back with a FCP of...
Clo - you make a great point about how expensive all this stuff is - I dread to imagine what I have spent over the years - and very hard to tell whether some of it helps or not. The only thing I can...
Thanks for all the input guys and girls. One of the reasons I wanted to stay on this forum is there is a lot of experience and willingness to help. I’m just off to see consultant for my annual...
Oct - stupid predictive text - meant Oxy...
Decent cup of tea, nice nurses and a private room upgrade? Are you sure this isn’t the Oct talking? 🤣🤣🤣 seriously, I want to move to your hospital catchment area. Last time I was in hospital -...
Thanks for your suggestion. I have an alternative which is that people who are not interested in the thread ignore it and people who are interested reply as they wish, being mindful of the rules of...
Just wondering how people are getting on who started using antioxidants inspired by the redox thread or recent hydrogen peroxide paper. My background in brief is: perforated intestine, sepsis,...
Glad you are recuperating NCOT. I had horrible nausea after my temporary ileostomy op and there are different painkillers you can try (this is Glos UK) they gave me fentanyl (very effective, no...
Just to say good luck today with your operation- hope all goes smoothly and you are home where you can get a decent cup of tea as soon as possible. Will keep an eye out for your updates- let us know...
I don’t know who moderates this forum but it seems very strange to me that someone posts about a different approach to an awful disease that has given them at least some promising initial results and...
Just found this - perhaps the paper we’ve been waiting for? https://www.wjgnet.com/1007-9327/full/v28/i31/4263.htm...
Just be aware curcumin can inhibit iron absorption as I discovered when I ended up with low ferritin despite also taking a multivitamin with iron - it also contained curcumin. The advice I got from a...
Just checking in on you NCOT. Hope all is going okay. Sending kind thoughts and good wishes from rainy Gloucestershire 😊...
Van Jordan and anyone else following the thread. I wondered if you had noticed any changes with blood pressure? Since getting Crohn’s I have had endless trouble with low blood pressure, struggle to...
Mine is very much of the silent type. I am extremely grateful that I have few real symptoms because if I was constantly rushing to the loo that would make work impossible. However it does mean that...
Sorry to hear your updates NCOT. Although roosterologist made me laugh out loud. A column in the Guardian surely awaits when you have swum through the current tidal wave of Crohn’s, mental health,...
Agree remicade worth a shot. All your ideas are possibilities. Depending where you are based you might be able to get an anti map opinion and prescription more locally. Try Crohn’s map vaccine...
Hi NCOT. Sorry to hear of your struggles, Crohn’s is indeed a wretched disease and I share the actually in 40s but feel decades older feeling. Just wondering if you have a blender. When I have been...
Thanks guys I took your advice and kept drinking fluids plus an electrolytes drink, recovered nicely, no flare. Thank goodness 😊 I appreciate the replies...
I am in the UK and after a resection the surgeon told me to keep an eye on my b12 level as he had chopped out the bit of intestine that absorbs it and so I would eventually run out and need...
Hello all and hope you are keeping well. My Crohn’s has been fairly stable for best part of a year since I started stelara. However there has been a tummy bug doing the rounds at my little ones...
Hello again I had just finished a course of budesonide when I discovered licorice tea. I’d been looking into adrenal support after several rounds of budesonide following a fairly heavy course of...
I started IBD-AID at the start of this year having switched to stelara in Nov 2020 due to failing remicade, entyvio, steroids and azathioprine and 6mp. My inflammation levels in April this year were...
Iron infusion is a good idea but make sure she has someone observe her for the first few minutes as a very small unlucky minority (including me which is how I know) can have an allergic reaction. For...
I have done, my GI recommended vsl#3 or vivomixx...
I wonder if you could be switched to budesonide as a way of getting off prednisone but still having some steroid and then weaning off that? But I am not an expert at all this is just an idea. It is...
Hello from a fellow Brit. Just wondering if you have any alternatives you haven’t tried yet (assume you’ve done remicade or humira so maybe the anti-map antibiotics cocktail or a diet like ibd-aid/...
Sounds miserable Only a couple of things I could think of. Firstly a mental trick I learned when I was woken a lot at night by my baby. Instead of thinking aaargh I can’t sleep I decided that test...
I’d love to know if you get any answers. I am similarly constantly feeling as if I can’t breathe fully (except sometimes if I yawn, bizarrely). I am anaemic in that my ferritin levels are low but...
I have been struggling with weight too. Crohn’s is not going well and not only have I not been able to put back on any of the weight I lost during resection surgery (in 2017) so still skinny but...
Doc should measure your blood inflammation (crp) and intestinal inflammation (fcp- from stool test) to see whether it’s reducing your inflammation levels because that is going to indicate whether the...
And maybe worth checking your blood pressure and iron levels with the feeling weird when you stand up? Good luck...
Sounds pretty miserable. My only suggestion is turmeric is supposed to help joint inflammation- maybe worth a try? My other half had lower back pain and we got a tens machine from the local pharmacy...
It’s unpredictable. My first remicade infusion went fine then a couple of days later broke out in a rash all over my torso that expanded over following days up to neck and down to pelvis. Went away...
Just to add my 2p worth, my other half had a full on cold a few weeks ago, thought nothing of it, had my vedolizumab infusion, 2 days later came down with the worst cold ever, lingered for ten days...
Hey good for you and I hope whatever they're paying you makes life slightly more comfortable. I don't know if you have tried it but my other half had pain in his hip and lower back and found heat...
Can't help with the WTF abcess but no inflammation I'm afraid. But in terms of the job, I would say go for it. At the end of the day you're trying to get some cash and the other benefits of working...
Just wanted to say good luck with the new job. I understand the feel crap/ need to earn money problem. I think I read on one of the forums about oregano oil helping with abscesses/ fistulas - did sod...
Just wondering about your b12 levels as low can cause hair loss and fatigue. May be worth getting tested or trying a supplement (spray us good as easily absorbed if you have tummy issues) or you can...
Maybe worth asking about entyvio (vedolizamub) it's a biologic but supposed to be gut specific rather than the whole immune system so fewer side effects. I've been okay on it and I reacted badly to...
Yes the old nhs can be great and can be just rubbish. Is it worth contacting PALS (advocacy/ complaints group most hospitals have) and seeing if they can get a faster response for you? Hard to know...
When I had a stoma bag after emergency resection I woke up one morning to find it had leaked so I feel your pain... the only way I could get decent nights sleep after that was a couple of thick...
Thanks for posting about the possible Europe trial next year, this treatment is the most hopeful thing I’ve read about since this disease attacked me a couple of years ago now. People who understand...
Hello Your experience sounds beyond hideous. The only thought I had was I read a paper by Borody a while ago where he treated previously untreatable fistulas with an anti-map/ infliximab/ hyperbaric...