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I find this happens all the time. I get up after finishing on the toilet, wash hands, go to leave the toilet, and think... nope I gotta go again:poo:

I'm still waiting for Pentasa to work. I've been on it 9 weeks now, but when I've tried coming off predisone I was in flare up within 24hours. Maybe I'm gonna need something stronger. My Crohns was described as 'long standing' which I'm guessing means pretty severe. Does anyone here know...

I was put on Pentasa when I was first diagnosed along with predisone. The Doc said to do a 6 to 8 week reduction of predisone to give the Pentasa time to work. Within 24hours of coming off predisone I was back in flare. So it's looking like the Pentasa is doing nothing for me. At the moment...

I seem to get more sense and constructive advice from here than I do from a lot of the doctors and specialists. I've been back to the doctors yesterday and I've been prescribed 1ml prednisone tabs so that I can try tapering the reduction even more, going down from 5mls a day to 1ml. I'll give...

Thanks Susan. yep, it looks like I'll have to try some other medication combinations, I'll speak with the doc tomorrow. The free drug trial people haven't informed me what drug it would be. They are running from an East Yorkshire hospital in Hull(if anyone knows anything about them?) Thanks...

I had exactly the same fears as yourself before getting diagnosis. I've experienced all of the same symptoms as you. The best thing I did was to repeatedly go to my Doctors until I was referred for a colonoscopy, after which I got a diagnosis and started on the treatment. Hang in there and...

I'm also experiencing pain on my lower left side below the belly button. The pain is there most of the time, steroids and Co-dydramol take the edge off it at times. I'm definitely experiencing some sort of blockage as I no longer produce semen. I'm still awaiting an appointment to see a...

I've been on a 6 week reduction of steroids(prednisone) since getting diagnosis. I've tapered the latter reductions which has extended it to about 9 weeks. I had my first day off them yesterday. Come evening time I'd started to flare up a little but I just went to bed hoping it would simmer...

I will get the B12 levels in my blood tested again. I have experienced sleep being unrefreshing, waking up and still being tired, although not so much lightheadedness when rising in the morning or after sitting long periods. The reason I first went to the doctor before getting diagnosed B12...

Thanks David. I'll speak with my Doctor about the level of B12 and maybe the possibility of increasing the injections. It's been a while since I was tested for levels in blood, although they were taking some blood samples last month at the hospital so it may have shown on that. I've had a...

Tahnks Sarahbear. The pain is intermitent, pins and needles in toes when exercising and pain in heels when walking.

I voted CD and sometimes, but the sometimes is rarely. It's usually been connected to medication or diet. When I have been experiencing flare ups and having maximum amount of Co-Dydramol I've gone days without going. Whereas with Prednisone I find it makes me go soon after taking it. I'm not...

Has anyone experienced any pains or numbness in their toes, heels, hands or fingers? I've been getting pains in my heels for a few years now, and I've also had numb toes when exercising. Could this be related to Crohns? I'm guessing a reflexologist would say that it could be as all parts of...

I'm around 15 when I've been at my worst. It's getting worse again now that I'm coming off Prednisone.

I find that it's usually an hour or so after eating that I feel totally wiped out and have to have a lie down.

I find that if I don't have an hours sleep in the afternoon I end up absolutely exhausted. Do any of you have the same problem?

My partner has commented on my breath smelling worse recently. I just wondered if anyone else had experienced this as well. I'm not sure if it's connected to something adominal. I know my teeth and gums have suffered due to my blood deficiancies, so that probably adds to it a bit. Oh well...

Thanks Pirate. Your blood situation sounds similar to mine. I think I'll be asking Doctor about the possibility of Iron Infusions, are they given IV? I can't stomach the oral supplements. The Doctor has said that the GI he has refered me to is supposed to be good... so here's hoping:)...

Hi afidz. I've just read up a bit more about remission, it does make me feel a little hopeful, although, I think there's a bit more to be sorted before I get to remission stage. I've started tapering off the steroids at 5mg a week. I started on 30mg. I was supposed to be dropping down to...

Thanks Shalinco... I would consider anything! Especially some of the alternative therapies, as I'm starting to feel like a pharmaceutical disposal bin at the moment! If I do manage to go ahead with the trip I'll be sure to be in touch :hug: