Well, I had a very early night last night, and feel better this morning, I've even brought some lunch to work (just a basic sandwich..!), so I'm going to see how that goes down. I feel quite...
Hi Danny. I know how you feel - Crohn's can take you to the very bottom of the barrel (pretty sure I'm there right now), but, as bad as these times feel, and as hard as it can be, things do improve....
I think my GI always suspected Crohn's, so kept looking for it, as in 2010 I had a perianal abscsess, and in 2012 had a fistulectomy to address the resulting fistula. At the time the surgeon said...
Hi MarjieKay. I was diagnosed initially with UC, and took oral/rectal meds and numerous courses of steroids for three years, when I flared massively (no oral meds worked) and was hospitalised. At...
Thanks both.. I got an appointment on 6th September, but the lovely IBD nurses have said to go in and see them if I need to in the meantime. Last time it got bad I took myself to A&E and was admitted...
Hi NCOT, Just wanted to say that I feel your pain and frustration - and (as you can see from this thread) you are not alone. **Hugs**...
Hello All! It's been a long, long time since my last post (I am sorry - I've been trying to ignore things!), but alas I am back.. I have been struggling on with Remicade infusions, before my last one...
Hi Rustic, your situation sounds remarkably similar to mine, though after my abscess I waited for 8 years before going back with the symptoms - it was an awful 8 years! I had a fistulectomy - the...
Hi Maid Marion, I started out a year ago on Remicade, and Methotrexate was introduced with my second dose. The Methotrexate actually induced my symptoms, so having had two tries at restarting it with...
Hi Hugo18! I'm on Remicade too (though initially hospitalised with UC before the dx changed to Crohn's), and have now been on it for one year. It took a couple of infusions (the first and second...
I know what you mean - Remicade worked so well for me I felt like a whole new person, but the 'old me' is slowly returning, the thought of switching is anxiety (and therefore flare!) inducing! I...
Hi Dikid, I seem to be in a similar place to you - they won't increase my remicade dose, as the levels pre-infusion are still high, and antibodies aren't there (still waiting on the results from last...
NCOT - I have had the exact same issue getting my methotrexate - turns out my GP practice was accessing the wrong database for hospital blood test results, which is why they wouldn't prescribe it. I...
I will push for Entyvio again before anything else, and look in to other non-biologic options.. I will defo look into IVIG, too.. I've always ended up needing steroids to curb a flare, which then...
Hello! Yep, I'm at the John Radcliffe. I had a bit of an issue when I was first diagnosed with feeling like I was not being taken seriously, but decided I'd had enough and had a bit of an unload on...
Hi NCoT - Which healthcare trust are you under? I only ask becasue there is no wait for Entyvio here (well, when I say no wait, I mean you don't have to wait to have it approved - just to get your...
Hello! I saw my GI on Wednesday, he has requested an urgent scope before he decides what to do next, he said the drug level in my system during my blood tests in MAy was high, so I may just have...
Thanks, scifigal2k, I'm hoping they will just make the infusions more frequent (they said they can't increase the dose..!), I'm open to giving it time to see if it begins working again - the symptoms...
Good morning all..! So, I'm due my infliximab infusion tomorrow (my second 'real' one after my three loading doses). Things had been going well on that until 5/6 weeks ago - I was feeling great,...
So glad to hear it's been such a positive journey for you thus far - long may it last! :-)...
NiceCupOfTea, I assume by knuckle-draggers, you are referring to those of us who voted out? I would rather be that way than have my head in the sand, certainly. With regards the IRA - this didn't...
I proudly voted Leave yesterday and I won't be shamed into feeling bad about it. I have seen the bad side of the EU - the side that doesn't care, the side that will let a country keep digging a hole...
Sorry to hear about the change in diagnosis Dikid - I know how it feels! I've stuck around so you definitely should - your advice has been brilliant!...
Thank you all so much for being so lovely :)...
NCOT - one thing I didn't include in my last post - was dairy free for a long time, but have recently reintroduced dairy yogurts (as the soya version gave me headaches!), and my stomach has calmed a...
Thank you all for your kind, and honest replies.. We are going to sit down this weekend and talk things out - my biggest concern is that I know what I'm like, and I feel like I've stopped caring, and...
Aw thanks to you both - yes I certainly wish he had said something when we first met, I certainly wouldn't have given up my job, my flat and my life back home had I known! I feel like I've wasted...
Haha NCOT I know how you're feeling! My worst flare everything I ate caused sever pain and was back and forth to the loo every 10 minutes, but I still had to have lunch and dinner! Then I started...
Hello everyone! Sometime ago I posted about the strife I have with my partner regarding health issues, lack of empathy etc well, having been in hospital and really quite ill, that all seemed to have...
The fatigue is certainly the hardest thing to deal with for me - I sympathise completely with you. I remember saying to my partner on more than one occasion when I got home from work that I didn't...
Ooo fatigue is my current nemesis (though I believe caused by my current medication as per my other thread!).. It's a real ball ache there's no denying it! :(...
Hi Keith, I know what you mean Re the name of the illness - it doesn't change how it feels! I will definitely ask to get all my levels checked.. I do take folic acid once a week, though I'm not sure...
Thanks Dikid - I will make an appointment with myGP early next week and see if he will order some blood tests... Oo well, I guess 'almost' welcome to the CD side of the road - I can't say I've...
Hi Red_34, I think they tested for B12 at my last infusion, so not sure if the results were back when I saw my GI the week after.. same with iron. I felt great until a couple of weeks ago - really...
Good morning all! Well.. what can I say? I was on a super-high from the infliximab after the hospilisation dramas.. I've now had my three loading doses, and am due my next infusion on 30th June. I...
Hi! I must admit, the first couple of days going back on the pill each month I have looser stools (when not flaring!) than normal, so it is quite possible that the contraception can cause issues (not...
Hi Kiki87, I know what the grey zone feels like - I've had UC for the last three years and last month had the dx changed to Crohn's.. As for the tummy trouble - Yes, I've experienced that. I find...
pmitra - that is fantastic! It's a hard road to get on to, congratulations on getting there! :-)...
I can well believe that Vitamin D would have an impact - I lived in Corfu, Greece for 7 years, and was probably symptom free for a good 6 of those years! Sadly returning to the UK coincided with a...
Hi Andrina, I believe patchy as in stretches of diseased colon, then nothing, then disease, deeper than just the mucosal layer, and I also have a(nother) fistula, which has lead to their change in...
Hi all! Aw thanks for letting me stay! Dikid - my iron was low, then Ok (after iron infusions!), they were testing at my last infusion but not heard anything.. No clue about Vitamin D levels, but my...
Hello All! I'm new to this board - I've been hanging out over at Ulcerative Colitis for a few years now, but following hospitalisation in March of this year (and history of a fistula which I had...
Hello everyone! I had my appointment with my GI yesterday - I didn't see the one I saw in hospital, but the head of Gastro, who I have seen before and get on Ok with.. He is happy that the three...
Hi Lauren - sorry to hear about your diagnosis, it can be an awful disease but it's not the end - there is always light at the end of the tunnel! I struggled for around 18months when I was first...
Peppermint is a definite - you can also take IBS tablets such as Colpermin (peppermint based!) to relieve gas, also, try a hot water bottle and lay down on your side (switch from left to right - it...
I am from the same part of the country as this lady, and was told for 11 years that I had 'ladies problems', that I was imagining it, and that it was a dairy or wheat allergy (yet I was never tested...
You have my sympathy - my accidents were all while I was in the car, so I now have a towel, loo roll, and some of those wet toilet-paper wipe things (Andrex), I also carry a pack of those in my...
I have an appointment with my doc on 19th May, after my third infusion next week - so I will ask him about the methotrexate then.. :-)...
Hi everyone, thank you for your kind messages - I really feel so very lucky to have reacted as well and as quickly as I have! AND as a little added bonus, I@ve dropped to 10mg of Pred, and the...
Hi All, Now, I don't want to count my chickens... But last week I had my second inflixiamb infusion, having spent a week in hospital (they let me home on Good Friday evening!), and previous to that...