Chronic proctitis

[Sillysausage2]

Hi, I posted a little while ago both my pregnancies gave me piles, never really cleared had an colonoscopy and I had Cronic proctitis she washed all the mucus and what ever away and put me on a 2 week dose of Pentasa suppositories. 2 a day. I was discharged. All was good but now a couple months on I’m back to square one. I’m trying two sups a day but not really making much difference. I’m just wondering as it’s quite bad has anyone been on a higher dose?

Symptoms at the moment are stomache, really not being able to hold myself long when I first wake up. More Blood and mucus than anything.

I know if I go back to the doctors he will probably just send me back to the consultant which just takes forever!

Any advice would be appreciated. Thank you!

[FRreedman]

Please go to your GP or phone your consultants secretary and request an urgent appointment. The loss of blood and mucus is a sign that things are not right, and need to be addressed.

[Sillysausage2 in reply to FRreedman]

Thanks, yes maybe I should, I just thought they would probs suggest the same meds’ I’m on. Thanks for replying

[FRreedman in reply to Sillysausage2]

I think they will at least think about trying something different as the original meds seem to be not working. The thing is the longer you take to go and see about it, the less chance the new meds will have of working, and the longer you will be suffering.

[Sillysausage2 in reply to FRreedman]

True, since I have 2 young children you own health seems to take a back seat 🙈 I will book an app. Can I ask if it’s proctitis that you suffer from?

[FRreedman in reply to Sillysausage2]

No, that is yes you can ask, and no I don't suffer with proctitis, I have Crohn's disease, for 49 years I have suffered with it, and I remember my very first consultant saying to me " Philip, never suffer with pain, bleeding or anything else, because they are all alarm bells, and should be switched off as soon as we know what has caused them to go off." I have used that mantra ever since, and found it works, so I pass it on all the time.

[Lvdmarte76 in reply to FRreedman]

I am a nervous wreck as doctors think my son may have Crohns and is currently under testing. He is 19, very skinny, Stomach pain near belly button, nauseous, loss of appetite, loss on energy. I’m so scarred! Are these some of the symptoms you had?

[Rosiesdaddy21 in reply to Lvdmarte76]

I’m currently going for tests for inflammation on my bowels. I’ve got a colonoscopy on Thursday, hoping to get some answers. I wouldn’t stress too much, easier says than done. But from

What I’ve heard any sort of IBD is highly treatable. Try stay positive until you get answers. It will be a worry for him but just keep positive. X

[Lvdmarte76 in reply to Rosiesdaddy21]

Thank you so much... I’m trying to be as strong as I can be and do not let him sense my fears.. he is very concerned himself and just wants to feel better. I don’t blame him.. he is 19 and has his whole life ahead of him.

[FRreedman in reply to Lvdmarte76]

Yes, together with alternating constipation and diarrhoea. Please don't be scared, (your son will be frightened enough for both of you), just be ready to support your son, should he need it or ask for it. When he has his diagnosis and prognosis, you're more than welcome to pm me or contact me via this site, if you need or want to.

[Lvdmarte76 in reply to FRreedman]

Thank you so much.. and will most definitely reach out with more questions , here is another ... All his blood work came back fine, shouldn’t IBD be diagnosed thru bloodwork, or no?

[Rosiesdaddy21 in reply to Lvdmarte76]

I’ve had numerous bloods done and the only thing that may show a slight sign is an inflammatory marker. But until a colonoscopy is carried out I believe that’s the only way to give a diagnosis as they can take biopsies then, and see any evident inflammation. Keep strong, if may be something dietary and simple to address. I’m hoping for some answers tmoro. I’ve been ill for months on end now. I’m only 27 week old baby to worry about. I can be doing without it 🙈 x

[FRreedman in reply to Lvdmarte76]

As Rosiesdaddy21 says, the only real way to diagnose is with colonoscopy, and Calprotectin levels tested.

[sandylo in reply to FRreedman]

My calprotectin levels are through the roof six months ago it was 2065 then a month later 1020 then 600 now back up to 900 I've not been well since I had 2 colonoscopies I was fine up until then now its just blood and mucous they can't seem to get it under control

[FRreedman in reply to sandylo]

I would contact my GP urgently, and ask for an urgent referral to Gastroenterologist Consultant. I believe St Marks in West London only accepts referrals from hospital and consultants now (but I am not sure about that). If you are able to spare £200 to £250, it would, in my opinion, be a worthwhile investment to get an initial appointment with a Gastroenterologist or surgeon connected to St Marks (It's worth it to put your mind at rest) BTW I am not connected to St Marks, except as a very satisfied patient.

[FRreedman in reply to sandylo]

Sorry, where did you have your colonoscopy done? Maybe contact the Endoscopist and request an appointment. The easiest way to do this is to phone up the hospital and ask to speak to his/her secretary and ask them to contact the Endoscopist for you.

[sandylo in reply to FRreedman]

The gastro dept do keep in touch by phone they are ringing me on the 10th at 10am. I'm under royal stoke University hospital

[FRreedman in reply to sandylo]

Tell them about your current situation (write it down so you don’t forget) and explain how it is worrying you. Ask them for help. If you get nowhere then contact PALS at the hospital and they will point you in the right direction. Good luck.

[sandylo in reply to FRreedman]

I will see what they say on Wednesday thanks.

[Sillysausage2 in reply to FRreedman]

Thank you !

[Liz191]

If you're pentasa suppositories aren't keeping things at bay you can also be given oral pentasa, which will also help if the inflammation had spread further up. In my experience the next step after that is either mesalazine enemas or prednisolone enemas. Speaking to your consultant and/ or IBD nurse is important though as they are the ones that will be able to change your meds. I know my GP won't do anything without them using a prescription first.

[Sillysausage2 in reply to Liz191]

Thanks for replying that’s my problem I haven’t got a consultant do will all take time so just trying to resolve myself at the moment.

[Newtothis22 in reply to Sillysausage2]

I have proctitis. Flare ups are treated with steroids as previous poster says. Prednisolone foam worked together with continuing the pentasa. You do need referral back to Gastro clinic but it’s very treatable. You may need to stay on maintenance dose of pentasa long term to remain in remission