Newly diagnosed with Ulcerative Colitis. Anyone else?

[turnthebiglightoff]

Hello all.
Last week I was diagnosed with UC; I thought I had bad IBS but the colonoscopy said otherwise!

I only have the info online as no one talked me through anything at the hospital. Pretty dreadful experience (sedative didn't work, was asked to leave 10 mins into recovery) so I'm a bit naive on what I should be doing right now. I have a really poor GP surgery, should I start with changing that? Am on Mesalazine, 6 a day and some suppositories.

Any advice welcome please :-)

Hopeful bump :-)

2nd hopeful bump

You poor thing.

Here are some things you might like to consider:

Join Crohn’s and Colitis UK. It's a great source of information and they fundraise for research (but they don't hassle you).

Try to work out which foods and drinks suit you. It will be different for each person. For me it's a Mediterranean style diet.

Take it easy (if possible) and give your medicines a chance to start working. If they don't work, there are loads of alternatives.

Hello! Thanks so much for replying. I had a feeling it was UC all along so it didn't feel like a shock or anything, which was helpful. Mediterranean is also my plan, I had cut out coffee and booze (occasional small slip up!) and fibre heavy foods a while ago. The Mesalazine is already showing small improvements so I'm hoping that continues for a while. Wanting to try for baby number 2 after Xmas, and don't fancy a pregnancy with UC! Thanks so much for replying

@turnthebiglightoff How are you getting on?

Hi there! The meds seem to be really helping; v bad day yesterday but I can see why they prescribe these!! I'm co scoops they probably won't work forever so am maintaining a decent-ish diet and avoiding everything I know is a trigger. Than you for checking in.

Just want to say to stay positive, my UC went away completely during pregnancy which was good as I was taking steriods before and that wouldn't have been good.

Hi!

I have had UC for over 35 years. I have taken many, many medications and tried every diet ever suggested. It is true that different foods have different effects for everyone. My suggestion is to take it slow in changing your diet, except make sure you are getting adequate nutrition. UC takes a lot out of you. Some find keeping a food diary helpful.

When I am flared, I have to absolutely avoid certain things, like spinach and kale. I need well cooked veggies. I try hard to get protein for healing. Eggs are good. Chicken is good. Soup broths can help a bit.

Do not blame yourself. It is not your bad diet, your lifestyle or whatever else well meaning people will mention. I cannot count how many times I have been asked if it is my diet. Seriously? I would live on sawdust if it worked.

Get yourself health professionals you trust and feel comfortable with. I have struggled with this. Many really have no clue. I now have a GI specialist who really does get it. I trust him. He listens to me. He has IBD nurses who I can talk to. He has me on Entyvio infusions every 4 weeks and I am better than I have been in years.

Drugs like Entyvio are relatively new. For decades I basically had to take prednisone to get flares under control and function. Prednisone works but it is harmful long term and has many side effects. If you can, try to fine a doctor who is up to date and understands this. Yes, it is sometimes necessary, but I am so much better without it.

About stress. UC causes stress for sure. But over all these years I have never seen a pattern of my flare ups corresponding with stress. They just make no sense. That is part of the stress of the disease. You never know when it is going to come back.

You will be OK. The new treatments are amazing. You now know what you are dealing with.

Take care.

@lovefall thanks so much for this detail. I am on Mesalazine, at the moment I've had no follow up from my colonoscopy via my GP etc, so I'm waiting for that to chat stuff through. I had cut out caffeine, most booze, green leafy veg, onions garlic and all dairy prior to diagnosis and that has helped. Since the colonoscopy I haven't had a proper bowel movement, but nothing like the pain and mess of before! I did have a bad flare up yesterday, but had missed a couple of tablets. The dr that did my procedure explained mine was bad at the very top and the very bottom; my sedation didn't work so I also saw this on screen! for everyone helping :-)

I have been a fan of treat from both ends at times. Meaning the oral mesalamine plus the retention enemas before bed. Early in my disease I also used suppositories but they don't go high up. If mesalamine is working, that's great. I never noticed any significant side effects with it.

At times I have found smoothies with kefir, banana etc. sustaining but if you can't tolerate dairy that won't work.

Again, watch you are getting adequate nutrition. I was told mesalamine depletes folic acid, and blood tests showed vitamin D deficiency also. Also watch you are not losing too much blood if you are bleeding. You can get anemic.

Sorry missed you had suppositories already.

www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/pregnancyfactsheet.pdf

This is from the USA foundation. It mentions the folic acid thing.

It is good advice about joining the UK group. I am in Canada.

Thank you so much, that's so helpful. Should I talk to my GP before I take supplements do you think? Or just crack on?

You may want to discuss it with your doctor. I am not a nutritionist or Dr. But in all honesty, I never did. I mention any supplements when asked but no one has commented. I just take a multivitamin with folic acid in it, and a vitamin D.

I think pre natal vitamins have folic acid in any event.

You will probably find people suggesting all kinds of things. I certainly have. With my response to Entyvio so good, I don't go looking for the miracle cure so much.

Sorry to hear about your diagnosis.
My initial treatment included steroid tablets and mesalazine granules . I then dropped the steroids after my symptoms were under control and I'm on mesalazine as a maintenance treatment. I wonder if you've not been given steroids as you said you were going to ttc? Your blood results should indicate what supplements you need to take. If you haven't had full blood tests, then I would ask for them.

I’ve just found this thread and as a fellow ulcerative colitis sufferer thought I would post my experience.

I was diagnosed at age 30 and have luckily mainly only had minor flare-ups that haven’t affected my quality of life too much. Some blood and mucus sometimes when I go to the loo but nothing too bad. I take 4x Pentasa tablets each day.

About a month ago my symptoms got a lot worse - more blood & mucus and the flare-up didn’t subside after a few days like it usually does. Plus I’ve had bloating and loss of appetite which is not something I’ve ever experienced before with UC.

I’m early forties now and suspect I’m just entering peri menopause, as my periods have recently become heavier and a bit more unpredictable. I’m beginning to wonder if this has somehow had an effect on my UC? Anyway I’ve spoken to a GP and have had a blood test, so waiting for the results of that now. Or maybe my medication needs to change.

Sending good thoughts to you all! UC is such an odd illness, sometimes it doesn’t impact my life much at all and other times (now!) it’s such a major thing.

I've been diagnosed about 15 years now with one major flare up but currently a flare up of random ulcerations that are not so internal. I'm otherwise very well controlled and FODMAP when i feel any stomach upset coming on.
I couldn't tolerate the PR mezalazine as it was very irritant but right now don't take anything at all but have follow ups with a GI consultant once or twice a year. I would be very surprised if you were not referred to one post endoscopy.
I was reassured UC tends to lie low during pregnancy but if I did have any flare ups there were plenty of treatment options available. In my local Trust UC guaranteess consuktant kef maternity too. Sadly I haven't managed to go full term ever but that is not a UC issue, that is a gynae issue.

That mess of letters should read "consultant led maternity".

@turnthebiglightoff how are you now? Did you get into remission?