Just diagnosed with UC but mainly proctitis & struggling with meds

Hi sorry to hear that your suffering and found the drugs you take is causing you distress, however I must say you need to stick with these as I have been recently diagnosed with full UC my medication is 60mg Steroids, 4grams Pentasa a day, i have on occasion tried to come down on the steroids but this has added complications and increased blood loss.

so I would recommend you speak to your consultant as he may be able to help you with your intake.

Hpope things inprove for you

take care

John

Hi So Sorry for you, Pentasa can be taken in different ways and forms, speak to your GP or Pharmacist if you are struggling. Also the meds are so important and they may well be not forever so don't think of that now, getting well is the key!

Getting well soon.

I'm a UC sufferer for 4 years now and quite frankly I expect to be on meds forever. Can't see an end to it! Wouldn't mind if some of them helped! I was given Pentasa but it didn't agree with me, I've tried Mezzavent and now on Asacol plus 4 weeks of pred steroid! Not helping much tho! I suggest you continue with what you're doing for your condition, it's early days and you may very well find those meds are just right for you. Stay positive, that's the real answer! Lots of water and be careful with your diet too!

Has anyone has success with diet related control or alternative therapies such as acupuncture or reflexologist or similar?

Hi28thjunemummy, people may disagree with me but diet does not cause colitis. But, once your colon is inflamed then obviously  what is passing through can be more difficult for the colon to deal with. Fluids get absorbed & removed in the large colon which makes the waste products become firmer- normal passing of poo. With colitis the lining of inflammed  colon not absorbing water, hence watery poo, blood, mucus, very urgent frequent trips to loo. Very unhappy & eventually unhealthy colon. To help your colon cope. Don't not have hi fibre. You will need to take meds & I'm sorry could be long term. Main thing is to get it under some sort of control.

Hi! I just saw your post and thought I'd share my experience as it's very similar to yours. I was diagnosed 5 years ago with proctitis but at that time I had no treatment and it went into remission on its own. 2 years later I had another flare up for a few months that also cleared up with no meds. Then in march last year I suffered a 3rd flare. I was under extreme stress and for a whole year I suffered with a really persistent and distressing flare up. I had a 3Rd colonoscopy last July and was told I had 20 cm of bowel badly affected. I was given various enemas, tablets and oral steroids but was unable to tolerate the side effects. Finally early this year I was put on steroid suppositories and had tests with a view to receiving biologic treatment. At that time I was off work and told by my consultant to try and reduce stress as much as possible. Amazingly in march the suppositories finally started to work and eventually I weaned myself off them as the bleeding etc stopped. I am now drug free as far as uc is concerned and hoping to stay in remission for as long as possible. The only change in my life has been all the stress reducing so it's possible that that is my trigger.

I thought my life was going to be controlled by this disease forever but I am proof that there are periods of remission when life can go back to normal. I'm just enjoying life and hope it continues as long as possible. I wish you lots of luck and hope you can get on top of your flare up very soon. X

Hi I sorry to hear you have UC. I was diagnosed with UC 7 yrs ago symptom was occasional bleeding. Started on Asacol which worked gt & the bleeding stopped & was symptom free. Felt marvellous!

2 yrs ago bleeding started. I have proctitis & ibs so suffer with blood, mucus, lots of terrible flatulence(!) and constipation which is a pain. I take Lactulose to help with this but it's hard to get balance between rushing to loo & wanting to go to loo but constipated. Gastro Dr's say colitis isn't caused by diet but I'd love to know how you get on with Paleo diet. A few people on site have mentioned SCD.

As other people have said different medication works for some people and not others. I'd say stay on yr meds now but maybe ring your ibd nurse with your concerns. I'm now on Dipentum and Pentasa suppositories at night but awaiting sigmoidoscopy to see if proctitis spread as meds not helping.

Hope you're feeling bit better. UC is a pain but hopefully you can get it under control. This site is gt tho for advice and help.

Gd luck. Keep us posted.

Kitti

Not much to add to what others have already said other than you can place the pentasa inyour mouth and then take a sip of water, the tablets disolve really easily and then you just swallow the granules! Easy, or ask for them in a sachet/granule form as I do. Good luck.