Good luck with it limey, hope it works for you and do keep us up to date on your progress :)...
Just took my first dose this morning. Here goes!...
Haha well done - and thank you! I'm sorry to hear you're still unwell but it's good you're seeing some improvement, hope the extra month does the trick for you :) Yeah I've heard about how slow...
Hi everyone, Thought I’d start a thread about this as it may be helpful to anyone else starting or thinking about taking Tofcacitinib/Xeljanz (I’m in the UK and they don’t seem to call it by the...
Actually HAVING UC would be the best part about it, if that's what I do actually have. It's likely I have Crohns colitis; if I do that's even suckier. A UC diagnosis would mean the world to me - wow...
Sara, to be fair he didn't say people who are anti-smoking are idiots. He's anti-smoking himself, in an ideal world. But the world is anything but. He's saying that people who are anti-smoking and...
Thanks Beth, same - when I had really bad pain, my whole colon was diseased, so hopefully the inflammation is limited to lower down this time....
Thanks for the responses everyone. I've not been scoped too recently, but I was thinking it's probably mainly rectal/distal inflammation, hence the amount of blood and lack of pain (I don't exactly...
Does this happen to other people? I'm losing large amounts of blood with each bowel movement and it's quite alarming. I would be contacting my hospital if I didn't have an appointment in just under 2...
Thanks mom2panda, that makes a lot of sense, and I'm glad to hear your step one was problem free regarding all things rectum related :). So for some I guess the UC/Crohns decides to fuck off since...
I'm very sorry! I don't even know how I did that?! I'll try to fix it :) EDIT: Fixed. Sorry for putting someone else's words in your mouth!...
Haha, that made me laugh. Still, I'd persoanlly save my energy to complain about the more serious stuff that goes on here - like people who spell it 'colitus' ;)...
Eh? All I've seen her do is post what works for her in threads where people are struggling and looking for possible answers, so I don't know where this is coming from (unless I've missed something)....
Hi kazygirl, Thanks for the reply. That's good to know that for some the rectum actually becomes quiescent after colectomy. Good luck with your furture surgeries, do you know when they will be?...
Hi all, I think I might already know the answer to my own question but I'd like to be sure. When you have 2 step j pouch surgery, they remove the colon and recutum, form the pouch, hook it up to your...
Remission for 20 years? Wow....
Thanks for the replies everyone :). Edbar, I did the FTs for about a week, nearly every day (donor dependent), and didn't see any change. But I actually only stopped because my donor got stung by a...
Sorry I forgot to mention I'm from the UK, so insurance isn't an issue luckily but unfortunately we're a little behind on treatments - Cimzia isn't approved here for CD yet, altho if it was I could...
fruit girl, I'm on weekly Humira, 100mg 6MP and the max dose of Asacol HD. I also use Predfoam sometimes (when I can retain it) to try and ease the rectal pain. Supplements wise I usually take Omega...
This is the thing that really upsets me about UC/Crohns colitis (not sure which one I have). The bleeding. Because for me, every other symptom is bearable. Generally, I don't get abdominal pain (just...
My last big flare was a bad one and a scope last summer during a period of remission showed 'confluent scarring' all the way through :(. So yes, permanent damage is very possible. But I suppose the...
Does anyone here have problems involving their mouth/tongue/lips? For a few months now I've had chronic dry lips - or should I say lip, as it seems to only be my bottom one. It's not painful or...
I know you can get fissures as a result of frequent straining/wiping/liquid or hard stools etc, but I seem to have had an anal fissure (or a couple) for quite a few months now and for no obvious...
Thanks Sue, that's reassuring!...
Thanks everyone, blueglass, You're right, I have no small bowel involvement which means my odds are supposedly good that colon removal would be the end of my disease - with an end ileostomy, that is....
Thanks Sue, Yeah, I tend to over-read and get a little bit obsessed about this kind of thing! I like going into appointments armed with all the info though, sometimes they look at me a little strange...
Hi everyone, I've just come back from a flexi-sig and my rectum is screwed - quite surprising since my scopes earlier in the year showed some rectal sparing even when in a severe flare, and when I...
Thank you for the suggestions everyone! I might try some of these things. pmedic, I'm amazed that you were able to get from your doctors recommending colectomy to being controls on 5ASAs and...
Thanks for the input guys. Glad to hear it's a common UC symptom (not that it confirms anything!). I've never used retention enemas but have used Predfoam Rectal Enemas (if you're not familiar, it's...
Thanks for the replies :). InSoFla, I've already done a lot of research into LDN and definitely want to give it a try, but I'm on Humira and 6MP (managed a blissful but brief 4 month remission that...
Unfortunately I don't think I'm a person whose disease can be controlled with diet modification, mainly because I can eat anything and not notice any impact on symptoms. Some would say that makes me...
Anyone else find each flare is different to the last? I'm currently experiencing what I think is a kind of new symptom for me - I get the feeling of needing to go, but when I get to the toilet little...
Wow, that's one hell of a story! I have to say your positivity and sense of humour in the face of all of that is nothing short of astonishing. You've made me feel very bad about myself for being such...
I just gave this a try at home, finished the 'infusion' about an hour ago, holding it in is a challenge! But one of my worst symptoms is tenesmus anyway so I can't tell if the enema has brought this...
That's great to hear, Boxermom :) I'm still following this thread with great interest for if/when I decide to give it a go myself (I'd start right now if I wasn't on Humira/6MP). The success stories...
Hi everyone, I've been reading this thread with great interest. I'm really pleased to see LDN is proving to be successful for some of you :) I have Crohn's colitis (Crohn's disease limited to the...
I've not met anyone with an ileostomy but I'm in online contact with a couple of people who have them. I am currently on Humira - weekly shots. Been on it for just over 3 months, it doesn't seem to...
Thanks for the replies everyone :) blueglass I'm the same, ileum is fine I believe, but my rectum is very inflamed. I thought it was possible to connect a j-pouch directly to the sphincter muscles,...
Thanks Sue and blueglass, Not had a second opinion, not even met with the surgeon yet (consult in a month), it was my GI who prepared me for the fact that given the nature of my disease, things like...
Hi everyone, I'm 24 years old and was dx with Colitis at the age of 19. Last year during a flare up, a flexi-sig revealed the inflammation was patchy, separated by sections of healthy bowel, changing...