Ulcerative Colitis

[Flarella]

Hi everyone
I was diagnosed with ulcerative colitis back in February after a colonoscopy and biopsy to investigate a quite sudden onset of bleeding, diarrhoea, mucus ,weight loss, pain, faecal incontinence, periods stopped and a random patch of hair loss on the top of my head.
it took months to be given medication. Pentasa suppository every night and 4 oral mezavant a day.
things have calmed down a lot.
hair is growing back. I’m not quite right but I’m much improved.
I have one more month of meds and a review in December.
Has anyone else experienced the above and were you OK after stopping medication?
Thank you for reading

Hello, I have UC too. It’s good your symptoms have improved. My understanding is that medication is lifelong once diagnosed but they may decrease your dose (or it could increase/change if symptoms worsen or return).
Loads of info on Crohns and Colitis website. X

Gastro person here.
you’ll most likely be on meds for life. It may change dependant on symptoms etc.
out of curiosity do you want to stop meds? If so, why?

Hi @flarella I have UC too though was diagnosed 9 years ago. After my hospital admission (with exactly your symptoms) I took steroids for about 12 weeks and at the same time started Mezavant, also on 4 tablets a day.
That then decreased to 2 tablets a day and I have stayed on that dose ever since. I think maybe I’ve been lucky that the medication has worked for me and I’ve been stable. I have yearly check ups too - at each appointment I ask about the possibility of coming off the medication but it’s always a no unfortunately.
Best Wishes.

UC here. Same symptoms. Diagnosed over ten years ago. Been on medication since diagnosis. Tried different ones. Sometimes on stronger stuff, sometimes not. But on it for life.

I was hoping to come across instances where people have complete remission with no meds. I guess I’m worried about long term side effects.
but I am very grateful for what the meds have done so far

My husband had UC for years, at the point of taking part of his bowel out he went to see someone in alternative medicine (homeopathy?) and out of that the main thing was drinking this slimy slippery elm mixture every day (he has it once before breakfast) and he's had a few flare-ups since but was able to get off routine meds for it. He's not had a flareup in several years now.

To be clear, it is not the tablets he takes as you can get those too, but it's the powder which you mix with water and drink.

Thanks for this. Glad to hear your UC is well managed.
have you made any lifestyle changes to support your remission?

Oh, this is interesting.
I’ve researched probiotics and have been taking them several times a day but haven’t noticed much of a difference. I’ll look in to slippery elm. Thanks

DH was diagnosed 30 years ago and was on oral steroids for a bit, but not continuously. He has had flare ups now and then, but rarely needs the steroids now. Just asks for a short course from the GP now and then. Less stress and staying away from certain foods helps, as does the odd course of Symprove.

He recently had a terrible flare up due to medications he took for a hip replacement, he was in a terrible state after those.... But essentially his UC is not a huge issue, he is lucky.

Hey, sorry just seen that you’d replied. I was diagnosed celiac at the same time so have made the necessary dietary adjustments for that. I haven’t really made other changes food wise. I eat pretty healthily.

I know the trigger for me becoming so poorly was stress (I work full time, my children were 18 months and 3 yrs at the time, my husband was working away and we’d just moved house) so I have tried to manage that as best I can. Life is still busy and stressful and I can’t change those things but I try to monitor how I handle stressors and factor things in which enable me to cope better (exercise, lovely walks, time with friends etc).

I was diagnosed in February too!

Have you seen / spoken to Gastro?

I was told meds for life but I can taper off which I am doing currently, just Pentasa every 3 days now. I have an instruction leaflet of increasing if symptoms start to return, plus who to contact.

Hi OP. I have Crohn's, not UC, but they are similar diseases. I had a complete colectomy after my first, life-threatening flare up. And I had a time of being on meds for 13 years. I have though had long periods of being off meds, including for the last 5ish years.

Regarding ways of managing it without meds, some people do find things that help and work out what their triggers are, but I never have. I spent a small fortune on probiotics, but it never did anything much. Mine seems to be very hormonal. Pregnancy and its aftermath helped, and now menopause has meant it's "quieter". Hope you find something for you.

Hi another with UC - diagnosed 16yrs ago. Am intolerant of Pentasa (and that group of drugs) so take Azathioprine. Every time it has been weaned I flare, but respond to steroids. Have been ‘well’ for past 5 yrs. Have no intention of trying again to come off the immunosuppressant, last time was truly awful.
I am sun sensitive - wear factor 50, love the shade so that is manageable- keep a close eye on moles etc. Can have winters with continuous colds, but always get flu vaccine early which helps.

it is a rotten disease, but can be manageable. You will know what works for you.

Diagnosed 20 years ago( aged40) , symptoms similar to yours. Really affected quality of life due to pain, bleeding, fatigue incontinence and Toilet anxiety . Many changes of medication, azathioprine for 10 years which I had to stop due to skin cancers ( common side effect), immunotherapy infusions which sadly didn’t work for me . I relished periods of remission and endured horrible relapses when even going to work was an ordeal. Now on a JAK inhibitor ( for the last 3 years) called fligotinib. I’m now really well, living life to the full and never think about where the nearest loo is. If your medication works, don’t think about stopping it. For me every good day is a benefit of taking these ( very expensive) tablets and I would be terrified of having to stop them.

@hostacentral does your husband not take any preventative medication? Just reducing dose of steroids when he has a flare up?

@Chewbeccait took four months from the colonoscopy for a consultant to call me and prescribe the meds, I didn’t ask about the long term treatment at that time because I was so desperate for some meds. I have another telephone appointment in December for review.

Hi op. I hope you're ok.

I'm new to all of this. I started to get constant bloody diarrhoea back in about May. My colonoscopy was early September.

Having kept a good diary, I made a link to lactose being a trigger and cut it out. That's helped 80% and I was kidding myself that that was the only issue, but no it's not. The intolerance is probably caused by the inflammation.

Biopsies not back until 7 November. The results will go to my GP and then goodness knows when I'll actually see a specialist and get medication. It's worrying it took you months. Had a bit of a cry today. I had to leave the office and work from home because I was having a 'bad day'. It's awful how it can suddenly come on. It's really affecting my quality of life. I'm horrified that it's only a matter of time before I accidentally poop myself in public. It's already happened at home when the bathroom door lock stuck.

Hi -
I have Crohn’s, so slightly different, but still IBD and lots of similarities including medication, I have previously taken the same medication you are taking now. I did manage to have a long period of several years where I was taking no medication at all - so it can happen!
Sadly I’ve been having a bad flare since January, nothing has worked and I’m about to start infliximab infusions. I have very similar symptoms to what you’re describing, plus some non-digestive issues and fatigue. But it’s really positive for you that you’re responding to the mesalazine and I do hope that will continue for you. Once your symptoms are under control your doctor might want you to still take the pentasa at a lower maintenance dose, to try and prevent you from having a further flare up in the future.
I see above that someone has recommended the Crohn’s & Colitis website, that’s an excellent source of information. You may also have IBD nurses at your hospital who you can call? At my hospital there is an IBD nurse helpline that I can call anytime, and the nurses are also brilliant. It’s worth asking your doctor about that. Good luck, and do feel free to reply with any questions! I’ve had this illness for 23 years now and there not much I haven’t read about it!