Hi NCOT, Fab that you finally got the go ahead! I was very lucky with my PCT as they managed to get it sorted within 8 days of my remicade infusion failure (but I guess they were terrified of the...
281 was my worst - needless to say as soon as the doctor saw that I was admitted straight to hospital, i was a bit of a celeb as it was one of their highest ever readings! But I can feel pretty...
Even in remission I suffer from terrible D, it's like my bowels just don't know to stop! I've had bile salt tests including a SehCat scan and that all showed nothing, which explained for me why meds...
I had something very similar, possibly the same, a few years ago. My left hand and wrist swelled massively and was painful, I saw several doctors who concluded it was just my arthritis manifesting in...
I'm so happy, just 8 days after posting the form I got awarded DLA! I guess that means I sent in enough evidence for them to not need to contact any of my doctors (who were in full support anyway)...
That's so great to hear! I have an appointment with a volunteer disability group to help me fill in my dla form end of the month as I have heard horror stories of the application process! I've been...
I have just graduated from Uni in the UK. The Uni was fully aware of my crohns, it's classed as an unseen disability, this meant that in halls I got an en-suite room, I also received Disabled...
I've used it but primarily because it relaxes me and sends me to sleep! Pain is virtually impossible to control in my case when I'm sick but I found tramadol at least helped me sleep through. I'd...
Hi, my dad lived in Abu dhabi a little while ago and after having a nasty flare up when I visited him and had to be flown back to the uk, he looked into GIs and treatment in the area in case it ever...
I remember before my first infusion I was nervous, so prepared myself well, mp3 player, magazines, drinks, snacks the lot - ended up being that the antihistamine they gave me before the infusion put...
Hiya, I was on methotrexate for 8 years, I stopped it after about 4/5 months on Humira as had gone into remission with both Crohn's and arthritis........8 months since stopping the mtx and (touch...
The remicade worked but just for shorter periods of time, I think the increased frequency of having to have them is what lead to the build up of antibodies which lead to the reaction. So far with the...
I was on remicade until I suffered a severe anaphylactic reaction, 2 weeks later I started on Humira and have now been on it for a year. My GI actually said that generally if remicade fails/doesn't...
I was on oral methotrexate for about 6 years - I can remember the first couple of months was when I got the worst of the side effects, it took trying several different Anti nausea/sickness meds until...
I often have to take magnesium, I used to find my symptoms such as leg cramps/restlessness used to get worse with flares though - to the point where I'd get the restless feeling in all my limbs. I...
I was on methotrexate for 8 years - tablet form for 6 years then injections for 2. Worked very well for me along with intermittent remicade, now i'm just on Humira. Tablet form seems to cause more...
are you from the UK? (the mention of rugby makes me think that!) If you are then it could just be down to funding, I'm on Humira and my GI has told me that NICE wants each patient reviewed after...
I found it took about a month for my hair to stop shedding and then another month before it started growing back, I've noticed that if I don't take my supplements (colic acid, vit b complex and...
I noticed after being on Humira for a couple of months that my skin would go sensitive for a few days after each injection, especially after showering my face, chest and arms would go bright red and...
I have Humira in university and bought a mini fridge - once I told my housemates that each injection was worth about £350 they understood why I wouldn't leave it in the communal fridge - just ask...
Hi, I was on methotrexate for 9 years in total, pill form for 7.5 years, injections for 1.5 years. Injections are much better than the pills I found side effect wise, best advice is to do it just...
When I first got it they literally had just been given the budget for it, as I was one of the departments severest and most unresponsive cases (5ASA allergy, steroids don't work and actually make...
Weirdly I find the thigh sooooo much better than the stomach! They had me do one in my thigh and then one in my stomach on my loading dose and I couldn't bear to do it again so went back to the...
Thats great! Hope Humira works well for you - mine had me feeling better so quickly and back in remission in a month! Once you know how to inject its a breeze - the first session where you do four...
I was on both for 8 years - no problems except tonsillitis 3/4 times a year and being in schools and universities I was in contact with lots of people and germs all the time so not too bad going...
I started Humira 2 weeks after Remicade......had an anaphylactic reaction and was so badly ill from the Crohn's they would have put me on the Humira the next day if it didn't take at least a week to...
Hi there, I am also from the UK and while on immunosuppressants (methotrexate) I suffered a really bad phototoxic reaction (on a cloudy day of all days!) and a skin cancer scare. Ever since then I...
I've taken codeine every day for the last 9 years since I was diagnosed - it never touched the pain but it helps the diarrhoea (which even though I'm in remission I still suffer from - some kind of...
ooh I love Angel delight and virtually live off it when I flare! Its like an instant mousse but is really light and fluffy, the butterscotch and banana flavours are my favourite!...
I had (still sometimes get) pain around the shoulder blades - when I got admitted to hospital for it the doctors said most likely thing was the gallbladder was irritating the diaphragm as the nerves...
After my loading dose I was told to take paracetomol every 4 hours as I'd probably feel flu-ey, I had a migraine the next evening but ever since then (touch wood) nothing! If anything afterwards I'm...
Have u been outside lately/in contact with UV? I had a similar sounding reaction to methotrexate a couple of times when my skin came into contact with UV (on a CLOUDY day one of them!) called a...
Haha I think Crohn's etc definitely enters the subconcious! I once had a dream Hannibal Lecter was about to eat me until I reeled off my list of medications to him and he turned his nose up and...
If you can't see a doctor for a while one good idea is to take daily photos and write any observations down, that way when you see a dermatologist they have a pretty precise record of what is going...
Erm I think I heard that the majority of poo is dead bacteria and our body holds a lot of water too so I guess it can still make its own poo even without food making up any part of it? Just a thought!...
I once had a phototoxic reaction and it looked like sunburn that gradually got worse and I remember it didn't feel like sunburn and wasn't hot too touch but wow it itched. I saw a fair few...
Just to update. I ended up in hospital yesterday, the second doctor I saw yesterday sent me for an X-ray and for a scan or something of my stomach, got given morphine and then waited over 7 hours...
Saw another doc and she suggested gallbladder is a possibilty, she's taken bloods and put a rush on them and is going to review me later this afternoon. In the meantime I got to take tramadol and...
Thanks for the responses guys, sorry to hear you're all suffering too! I am doing bit better now, temp is now down to normal and I'm not having the stabbing pains in my back as frequently, just...
He checked out my back, neck and arms and range of movement and as my movement isnt effected and the pain doesn't change if I move it or not thats what convinced him its not muscular. And the fact...
So I went to the out of hours doc as I've got really bad shoulder pain which I figured was from spending too much time at the computer which had got really intense and so thought I'd see if they...
Same, always been couple of sachets prep the afternoon before and then scope/whatever the following morning for me....
My last colonoscopy I was fully sedated, mainly as since the last one I've developed anxiety in hospitals, I'm not sure what they used though. I have absolutely no memory of the procedure or anything...
I had my first remicade infusion when I was 16, I'm 23 now, I use it occasionally alongside methotrexate (once in remission you don't have to take the remicade anymore) There are already so many more...
So true, I've had two deaths in my family due to perforations (they did not have Crohn's) so I've always understood just how serious things can get. To me taking my meds is no different to take...
NSAIDs can cause ulcers and bleeding, usually in the stomach and beginning part of the intestine. It can't cause Crohn's though but could make it worse which may be why theres a link to use and...
Ah well you're more than welcome to stay here! Sorry about the circumstances though, Crohn's does truly suck but getting diagnosed is at least some of the battle done, now hopefully the docs can...
I think everyones already pretty much covered everything, but just wanted to say hi and welcome to the board!...
I've got pain meds from both my GI and family doc, all seemed to understand how painful this disease can be! Get on to them and get some different pain meds, ibuprofen/NSAID's can kill - I've had two...
I have had remission periods of up to 3 years! In remission I still have diarrhea - but thats not because of active disease or inflammation it due to a some permanent damage somewhere. I take codeine...