IBD diagnosis

[DevonMuma]

Hello everyone
I'm new here :) hope this is okay to post

I have been having poo troubles for a few weeks and had a flexible sigmoidoscopy a few days ago and they've advised it's proctitis/ulcerative colitis. They've taken some samples for testing and I'm waiting to hear if it's definitely that but they seemed pretty sure it was. I'm feeling abit overwhelmed with it all and was just wondering if anyone else here has IBD?

They've given more a 4 week course of Prentasa suppositories. Has anyone had these?

Thanks in advance

Hi Devon,
I'm new here so not sure how to reply to messages but I have IBD. I have Crohns disease which is very similar to UC.
Its a scary time when you first get diagnosed and it will be overwhelming trying to take in all the info they are giving you.
Have they given you any advice on dietary control or referred you to a nutritionist?
Its good to find groups where you can seek advice. Crohns and colitis UK are brilliant.
Happy to help in anyway

Thank you for your reply.

I will have a look at that group

I haven't yet been referred to the ibd team so I guess I will know more then about diet etc. Have lots of questions for them.

Are there certain things you can't eat?

Hiya I have ulcerative colitis. Was diagnosed 5 years ago now at 25 . The first year of diagnosis is the hardest going as it’s all about finding out what works for you. I personally found out what helped me was joining Facebook groups and spoke to people. Happy to answer any questions if you have any :) x

Hi Devon,
There is quite a bit I cant eat but you will find everyone with IBD struggles with different things.
The most common things are hard veg like mushrooms, sweetcorn etc. Nuts. Spicy foods.
I find anything with high fat content absolutely destroys me.

You might be recommended to go on an elimination diet of some sort where you try things to rule them out.

I have UC. There's a good group on fb, and it's closed so people won't see your posts. It's a very individual condition I find, what works for one person won't for another, and there are varying degrees of severity. I've had Pentasa suppositories, they helped to some extent but I ended up needing immune suppressants to control mine. You may find they work for you though.

Thank you so much for your replies.

I've been taking the suppositories for a few days and they seem to be working-although not sure if they 'work' that quickly.

My symptoms have never included diarrhoea and I've never had to run to the toilet luckily. My main symptoms were blood & mucus in my stool and pain, tiredness. Since having the flexible sigmoidoscopy and taking the suppositories I haven't had any bleeding which I'm so relieved about. The report findings they gave me said proctitis which I think only affects a smaller area but still waiting for the sample results. They also said I had haemorrhoids 🙈

I've cut out caffeinated drinks and just have decaf now and I've also cut out onions and mushrooms :( some of my fave things...
not sure if that may have helped my symptoms

How long did you have to wait for sample results to come back?

Thank you for taking the time to reply to me I appreciate it :)

I was diagnosed with mild UC about 3 years ago. they gave me pentessa enemas...before I realised what they were. I've never actually had the courage to do them (if anyone has please tell me what they are like). I then got pregnant so I couldn't do them for a year or so anyway.

I used to have to run to the loo and always had to know where the nearest loo was. thankfully it hasnt been so bad since I cut out onion. I also have blood and mucus in stools on occasion but it doesn't last that long.

Hello! I was diagnosed with UC about six years ago. I'm now on mesalazine which mostly keeps it in check and I've had a couple of stints on steroids.

I'd say the biggest thing for me was being aware of it and learning to gauge when it was getting out of control. The first few times I flared I wasn't really paying attention to the symptoms, and it spiralled. It's quite important to make sure you're on top of it and as soon as you think it might be getting bad, seek help. I'm really lucky in that my local gastro dept has a helpline where you can leave a message and they call you straight back. It might be worth seeing if yours has anything similar.

I now have the added stress of breast cancer, so will be starting chemo soon - not sure how that will affect the UC. But that's another story!

It feels scary at first, but honestly does get easier and just becomes part of your life.

Hi,
I just happened upon this thread. I’ve had UC since I was 14 - so 27 years now! Hard to get your head around at first but there’s lots of support around now; support groups others have mentioned on FB etc will hopefully help you navigate this whole thing. As a previous poster said, Crohn’s & Colitis UK is an excellent charity and they have brilliant help available. I’ve found them so useful with info on things like risk management / shielding issues etc during Covid especially. Hope you’re doing well OP; at least knowing what it is that is wrong is a starting point. Good luck! X