Ulcerative Proctitis and pregnancy...can anyone help?

[anxiousandpregnant]

I'm just after a bit of advice RE: Proctitis and Pregnancy. My Proctitis isn't too serious (I don't think) just the beginning bit of the rectum.

I was diagnosed in 2012 after DC2, I have had bad flare ups over the years but the past 2 years have been pretty good. I'm currently 27 weeks pregnant and have been having small/medium flare ups but my suppositories do seem to help, I take one each night which is what my consultant told me to do when I was first diagnosed.

From day one of being diagnosed I've not been offered any follow up appointments or a repeat colonoscopy/tests to see if the disease is under control etc. I just feel like they gave me the diagnosis and a leaflet and sent me on my way.

My worry at the moment is what if im having a flare up during labour, is this dangerous? Can Proctitis cause any pregnancy complications? I just don't know! I went to see my GP to make sure I was still ok to take my medication during pregnancy and they've said this is ok to do but he had to look it up online, which didn't fill me with confidence!

I would love to hear from people who have been through pregnancy with Proctitis and been problem free.

I can't answer your questions I'm afraid but do you have any details for the IBD team at the hospital where you were seen? I can email or phone if I have any queries and they always get back to me straight away. In fact earlier this year they organised some tests via my gp as I'd gone under the radar for some reason.

No I don't have any details as I was never given any, I could probably do with finding out so I can contact someone. It does sound as though your well looked after by your GP and hospital whereas mine just left me to get on with it since 2012!

If ever I've had a problem or a question I've always just made GP appointment, but I could probably do with speaking with the IBD team instead.

Another worry I have is how would I ever know if the disease has spread further up the colon? Or if I have bowel cancer? All the symptoms would be the same.

My consultant told me that it is unlikely to spread and doesn't increase the risk of cancer, but I'm not sure if that was particular to my case or proctitis in general. Have a look at the NICE guidelines. I'm pretty sure that for Ulcerative Colitis they recommend a colonoscopy 8-10yrs after the first onset of symptoms and every X number of years after that.

And re bowel cancer, yes the symptoms are similar but presumably wouldn't be relieved by your usual medication if it was cancer causing them.

Also I wasn't that well looked after to start with, I had to be pushy. This was after the initial diagnosis and medication was given and I was sent away with very little info as to what to expect. At one point I had symptoms continuously for two years as I just thought that was how it was, and it wasn't till I mentioned it to my GP who was and got me seen at the hospital again. I saw a different consultant who was fab and really sorted me out. So if you're not being looked after then try shouting a bit louder

Thank you that's made me feel a lot better!

My symptoms have been causing me more problems than normal the past 2 days and im feeling a bit rubbish, I'm just so scared of it affecting my pregnancy so I think im going to track down the IBD teams details for my local hospital and have a chat with them.

I have IBD, but Crohn's disease. Since diagnosis I've had annual appointments at my hospital gastro department, and 3 monthly appointments during pregnancy. My GP wrote to them when I got pregnant to see what they wanted to do. All this despite my IBD being largely under control. I also have access to the dept via email and phone for any immediate issues. I'd certainly push for more support if I were you. Luckily pregnancy seemed to improve my Chrohns and I had no issues during it. I did have some problems after though, so was grateful for the easy access to support.

Thanks for that Katkin14 , I've just had a search for a support network in my post code area and I can only find one for the next district along so have emailed them for advice. Hopefully they can point me in the right direction.

I have ulcerative proctitis and have had two pregnancies. The first one with a flare up. They didn't do anything different with me really, i just did keep an eye on the flare up. I chose not to treat it but was told the topical medication was safe. I did flare very badly in the newborn phase with my first daughter which was not nice but the pregnancy & deliveries (first natural, 2nd c section) were fine from that perspective.

Incidentally since that flare up I have been totally fine, that was 6 years ago.

I have proctitis, diagnosed a couple of years ago and touch wood haven't had a flare up since I took the initial suppositories. I was told to contact the colorectal nurses at the hospital if I had any queries or flare ups.

I hope you're ok and can find someone to help you X