Ulcerative colitis

[Larks0ng]

Does anyone have experience of this, please? I have had SLE/Lupus for 38 years (I am now 74) and am waiting for an urgent referral for a possible colonoscopy. I am wondering if I could have ulcerative colitis and would like to hear from anyone who has knowledge of it. Thank you.☺️

[LalSD]

My daughter who is 29 and a young mum has ulcerative colitis and SLE. There are other issues as well but the main are the two. Hope this helps. With best, L

[Larks0ng in reply to LalSD]

Thanks for replying LalSD. It must be difficult for your daughter as a young mum. Puts it in perspective for me as an oldie! Best wishes to you and your family.

[LalSD in reply to Larks0ng]

Dear Larks, I think there is a medicine, that controls UC. It helped us alot. I flew my daughter to another country for diagnosis as UCL was rude and uninterested at the time when we had red blood pouring out of her. She was about 16/17 at the time. Very scared and confused. A doctor in Turkey has done all the tests and gave us the medicine. Change of diet, rest and she is a bit better. Unfortunately, her lupus diagnosis was soon after birth after a complicated pregnancy.

I would try to find various treatment options and dicuss it with your consultant when you get to see them

Hope you recover and get back to normality soon. L

[tas1kubra in reply to LalSD]

hı LalSD, may I ask what the doctor in Turkey recommended for your daughter?

[LalSD in reply to tas1kubra]

Hello, tas1kubra, Although I can not recommend a medicine and I am not a doctor, the medicine my daughter used is mesalazine. I think there was one more and will find out and get back to you as soon as I get. Reply from my daughter. It worked wonders.

She is better now.

Hope it helps..

[tas1kubra in reply to LalSD]

of course, thats very appreciated! I am from Turkey, even though right now we live in Denmark, my husband has UC and his treatment has started in Turkey. He was in remission for 10 years, but unfortunately in last 2 weeks he relapsed.

I think he is currently using mesalazine. I wonder whats your daughter using other than this. Since this is a flare up, that struck after a very long time, we dont know how our doctor will approach to this topic here in Denmark. But if its necessary, we will go back to Turkey for treatment. Thank you for your very quick answer.

[Bakbre]

Hi there

You have all my sympathy, this is a horrible condition!

I was diagnosed with Ulcerated Colitis in April this year and I too am an "Oldie" at 72! I have had UCTD & RA since 2024. I had a dreadful 8 weeks with this and all I can say is I got to know my bathroom very, very well!

I was given a Colonoscopy which confirmed the diagnosis and was given tablets to calm it down. Unfortunately I was allergic to the initial prescription but eventually I was put on different medication and it has cleared up well. Obviously it flares up every so often (as with all immune diseases) but the majority of time now I can keep it under control.

I was more scared of the colonoscopy but that went fine and I had no problems at all.

All I can do is wish you good luck, I think that once it is confirmed what it is you have, you will be okay.

With my best

TC

[Larks0ng in reply to Bakbre]

Many thanks, Bakbre for your reply. It is encouraging to hear you have responded well to the medication. It may be that my colonoscopy reveals something entirely different, but I like to be prepared for all eventualities! Keep well.

[hetty2011]

I have lupus and ulcerative colitis both autoimmune diseases

[Graystar]

Hello LarksOng, It is possible as autoimmune diseases like to travel in packs!

I have microscopic colitis (which was misdiagnosed as IBS for 40 years), fortunately it’s not got the serious issues that UC has but it’s still very debilitating. I have multiple episodes of diarrhoea everyday and it is painful.

It’s harder to diagnose as it can only be seen under a microscope so they do need to take biopsies of your colon whilst you have the colonoscopy performed. I only mention it as it may not be as serious as having UC and I hope to reassure you that there are other things that can cause similar issues.

Just to say make both jugs of the prep up at the same time and refrigerate them. It makes things easier as the first jug will start being active pretty quickly and the colder the prep the easier it is to drink.

I hope you find out soon what’s going on and that it is something you can manage more easily than UC.

[Larks0ng in reply to Graystar]

Hello Graystar, thank you for your informative reply, and for the tips on the prep. I sympathise with the difficulties you are experiencing on a daily basis. I understand that there are many different outcomes from having the colonoscopy. I like to be forearmed with as much information as possible, without scaring myself silly! I wish you well in the management of your condition.

[Graystar in reply to Larks0ng]

I hope it goes well and I know what you mean about being informed without being scared silly. It’s a difficult balance to achieve but whatever is going on needs addressing as there maybe a simple solution?

[Larks0ng in reply to Graystar]

Yes, thank you Graystar, it could be one of several conditions so I mustn't jump the gun. I will just be patient and await the appointment date which could take up to 6 week from now.

[posthinking01]

Hi there my mother suffered with this for many years - I have just had a colonoscopy and would just like to warn you to follow the instructions prior to having the procedure - if it says drink water at this particular time - do follow it to the letter. Otherwise they can refuse to do it if you haven't cleared out properly. Are you on steroids for your Lupus ? and have you had your thyroid checked. I have found when I get 'loose' a few zinc drops by Bio-Care in a drink of water stops it dead - but don't obviously mess around before you have the test - zinc is used in India and other areas where gastrointestinal disorders exist and it certainly works. Hope this helps.

[posthinking01]

Zinc can cause nausea/irritation to the gullet so always take with food - I find a couple of drops of zinc in a glass of water helps. who.int/tools/elena/bbc/zin...

[Larks0ng in reply to posthinking01]

Thank you pt01, for the guidance. I don't have a date yet for the colonoscopy and may have to wait up to 6 weeks for it. I only take steroids if/when I have a flare which nowadays is not so often. I do have an under active thyroid which is treated with thyroxine.

[posthinking01 in reply to Larks0ng]

You may need T3 thyroid hormone but getting it prescribed is another problem - like pulling teeth.

[Larks0ng in reply to posthinking01]

I’ve had under active thyroid for donkey’s years with no problems at all. Fortunately!