Ulcerative Colitis

I went through exactly the same thing as Franbern with planning everything round being near to a toilet etc before I also had an ileostomy in 1987. It changed my life and I was able to be a normal wife and mum.

I hope you can manage with treatment and medication. If there’s anything you want to ask just send a PM

Thank you Flexagon for you quick reply.

Nanderin

Hi I was just wondering did any of you have covid vaccine with this condition.

Yes. The advice on the Crohn's and Colitis UK website is to have the vaccine. Here:

www.crohnsandcolitis.org.uk/news/latest-coronavirus-vaccine-for-people-with-crohns-or-colitis

Hi I was just wondering did any of you have covid vaccine with this condition.

I suffered with UC for ten years back in the 80's. I had small children and was horrified at the suggestion that I should have an operation that would leave me with a permanent stoma.
Had little or no sympathy from my husband, he just tried hard to ignore the fact that I was ill. So often could not go out anywhere at all and would spend the first couple of hours going to and fro from the loo. Any hourney anywhere had to be carefully pre-researched in order to know exactly where public toilets were situated.
Medications and understanding of this horrible illness was not as well advanced then as they are now. I virtually lost that ten years of my life.
Had a full ileostomy in 1990 and have never looked back. Drastic, but effective.

Autocorrect could not handle “Infliximab” !

Monoclonal antibodies such as Influximab and Rituximab are amazing. They lower your immune system and that stops it attacking itself.
My D was on a 5 year drug trial 8 years ago of a “-mab” for her Psoriatic Arthritis - who knew then that it was part of the same “family” of autoimmune diseases as DH’s UC, even his asthma and eczema.
I am glad somebody else has pointed out the benefits of an IBD nurse.

My 20 yr old son has crohns disease [ diagnosed when he was 8].
Do you have an IBD nurse? There should be a point of contact.
Crohns and Colitis website is excellent. I also recommend them on facebook if you have it. You can get help and advice from people who are going through the same thing.

It is very overwhelming to start with, especially understanding all the new medical terms. Which medication have you been put on? My son has been on infliximab infusions for the past seven years which has really changed his life. He was on Azathioprine until two years ago too.
Hopefully whichever meds you are on work well for you, though it can be a bit trial and error to start with.

Feel free to message me if you want to chat. I have been talking IBD for 12 yrs now

Thank you all..it's very much appreciated.

That should have read “IBD” nurse by the way.
I hope you are “under” a specialist department, as you mention your “local” hospital.
If not, it might be worth getting a referral as experience and awareness of the latest developments may vary.

A close male member of my family was diognosed 10 years ago. He was feeling very distressed with the symptoms. It did take some time for his medication to improve his UC. However , he is now in a very good place , has occasional set backs but is generally well. He looks so much better! I could see he was not well so asked if he was ok ( don't see him regularly) he told me about his recent diognosis. I have no personal experience of UC but am well aware of how difficult and distressing it is . I wish you well , hang in there ! Good luck.

My late DH had UC. from his teens until the point where it developed into Primary Sclerosing Cholangitis.
It was mostly well managed with variations of Sulphasalazine and I would recommend you make contact with your hospital’s I D nurse who will be a source of invaluable advice and who you can ring any time. She/he will be able to advise on diet, medication, your general well-being.
You might also like to join one of the online support/patients’ groups, as it helps to know you are not alone.
Which hospital are you under? (Feel free to PM me if you do not want to give out too much personal information on an open forum. )

I am sorry to hear about your diagnosis. I hope there will be someone who comes along soon who has personal experiences to share.