Crohns / ulcerative colitis sufferers

I suddenly came down with acute UC in Nov 2005. Within a month I had my large bowel removed and had a bag for about 6 months.

http://bleddyn.co.uk/

Since had a reversal, but it still affects me on a daily basis and for the rest of my life.

Crippling disease, I can only imagine what crohn's patients go through :(

The never-ending tiredness and numbing pains are intolerable at times.



My wife is amazing and stuck by me through all the rough patches
 
I'm in the U/C club too. I was medically discharged from the forces due to it. I'm up and down and somewhere in between. Stopping taking Azathioprene has done wonders for me but I'm awaiting the flair up.....

This does sound interesting but will wait and see before getting excited....
 
Sounds very interesting, fingers crossed it all goes well.
I was diagnosed with crohns about 11 years ago but have been fairly lucky compared to some, although I have had a few other related issues.
I've also just stopped taking azathioprine so alternatives in the future would be good.
 
If its anything like a baldness cure expect them to keep saying "we expect a cure will be available in around 5 tears time" for the next several decades.
 
novaenough said:
I've also just stopped taking azathioprine so alternatives in the future would be good.
Click to expand...

I've just started...

Unfortunately I'd been told 'Its probably just IBS' by numerous GPs over a few years... now I'm told by the consultant that I've probably had it for a few years and will likely need surgery at some point. Fortunately a rather switched on junior Doctor on her GP placement decided to order some blood tests then sent me to a consultant.
 
Last edited:
Fingers crossed indeed.
My Mum's been suffering from Crohn's for the past 2 and a half years (still not under control although she's working her way through the medication based options), and it's horribly debilitating and restricting her life hugely.
 
I just take Asacol now after 4 years of Azathioprene. I still get symptoms but I feel much better in myself and far less bleeding and cramps. Since stopping the Azathioprene I have been sleeping better as well. Whilst on it I used to get bad cramping in the evening and night....

I'm pretty much waiting for a big flare up to prove me wrong, I stopped taking it just before Christmas so still early days but it's an improvement for me so far..
 
Azathioprine started working after a couple of months slowly but surely. I stopped last year and UC slowly crept back in again till I ended up in a&e. Back on it now but still flaring at the moment. First set of steroids in 2 years though. Hopefully will kick it into touch again.

Have a cctv survey booked in soon :eek:
 
maccapacca said:
Have a cctv survey booked in soon :eek:
Click to expand...

that never bothered me... I was practically out of it through the whole process... unfortunately as they didn't find much (other than some gastritis in my stomach) it delayed things... was only later, after an MRI, that the crohns was really obvious in my small bowel. At least it explained why I'd suddenly need to vomit at times while sitting at my desk at work...
 
http://crohnsmapvaccine.com/faq/

interesting:

The vaccine is currently in the Pre-GMP (Process development) phase of manufacture. GMP manufacture started in Oct 2015 and will last 1 year. Phase I trials in healthy human volunteers are expected to begin in June 2016. These will be followed by a Phase II trial, anticipated to begin in Feb 2017. The Phase II trial will be a single-centre trial based at St. Thomas's Hospital, London, UK in 20 adults with Crohn's Disease and will last 1 year. The estimated timeline of the Vaccine manufacture and trials is shown in the Gantt Chart below. The patients recruited to this trial will need to meet strict entry criteria; there are stringent regulations which we have to obey and the trial will be governed by the close scrutiny of the regulators. Regrettably we cannot invite people to take part in the trial at this time. However, the results of the trial will be analysed in real time as it proceeds. As soon as there is evidence of safety and efficacy, we can apply for use of the vaccine on compassionate grounds; this will enable people who wish to have the vaccine but are unable to be part of the trial to access it on a named-patient basis outside of the trial. Indeed, under the newly proposed ‘Early Access to Medicines’ scheme in the UK, severely ill patients who have failed existing treatments may be granted access to new medicines that are proven to be safe, even before efficacy has been fully established. This means that the earliest the vaccine could be made available to patients on a named-patient basis would be late 2017. In addition, following the demonstration of safety and efficacy, it is anticipated that the Vaccine technology would be licenced to a pharmaceutical company to make it available to all who need it through health services worldwide -as part of this, larger Phase 3 trials inviting wider participation would be expected. The manufacture and trial of the Vaccine is being funded through investment in the company HAV Vaccines Ltd (HVL) -completion of the trial according to this timescale is dependent on HVL to secure the remainder of the funding required.
Click to expand...

fingers crossed....
 
Yeah, I don't think its anything to be ashamed about. I had to wear a stoma pouch for a year after getting part of my bowel removed. After the reversal I've been more or less symptom free ever since.

I think it must affect people in different ways, because I never suffered from vomiting. For me it was just pure pain caused by the diseased section of my bowel narrowing, so anything passing through that part was sheer agony. There were times I was running to the toilet nearly every 20 minutes, and producing tiny little rabbit pellet poops.
 
UC can be bad enough at times. But I stop feeling sorry for myself as soon as a crohns sufferer turns up. I was diagnosed at the same time as my OH Nan was diagnosed with bowel cancer.....

She's all clear now.......Sometimes I think.....

Third week in with Azathioprine I've just reduced my Pred by another 5mg so hopefully in another week when down to 20mg my Diabetes should clear up.

I've not YET had any of the dreaded side effects from the Azathioprine. Still on weekly blood tests but nothing real to report. Is it still too early......Or am I setting myself up for tomorrow morning
 
You must log in or register to reply here.
Back
Top Bottom