Help and advice please.

[Mossymoomoo]

My daughter was diagnosed with ulcerative colitis last year. We have only recently realised how serious this could be as we were given no advice or information at all. She has had a couple of really bad flare ups due to taking headache medication which we have since discovered were the cause of the flare up. I’ve read some articles about eating low carb diet which is going to be fun as I have IBS and was advised to control it with a high fibre diet. How do you manage yours, how to avoid flare ups, what to do/ eat when having a flare up. All advice appreciated. Thanks

[Cylarreta]

Hi. It’s not easy, but a few things that I keep learning are that remaining hydrated is really important, high fiber foods can be difficult to process, especially in a flare, aloe vera juice helps in healing the gut, some probiotics help, stress management and rest are important, finding a good GI or functional medicine doctor is important, sugar and dairy make my life miserable, everyone is different so it’s important to keep track of what you’re feeding your body and mind so you know what works for you and what doesn’t. Stool tests can be helpful in case there are parasites or candida involved. SIBO can also add to IBD. This is a helpful site. Good luck.

[Mossymoomoo in reply to Cylarreta]

Hi thanks for your reply. Do you avoid sugar and dairy all the time or just during a flare?

[Cylarreta in reply to Mossymoomoo]

I always avoid dairy but sugar is really a challenge for me. I feel it when I have it though. Has she tried an elimination diet? NL88 is correct, everyone is different. Cod liver oil is anti inflammatory and really good for you. My doctor has me on vitamin D and makes sure I’m not deficient in it. She also wants me on a gluten free diet- not easy.

[NL88]

Every one is different and you need to find what works for your daughter the best.For my daughter anti diarrhea diet works the best while in flare along with bowel flashes and fasting, a lot of organic fresh blueberries, Biocidin LSF, Balsalazide with Megasporebiotics, Zinc, Cod liver oil, vitamin D3. She is also gluten free.

While in flare no gluten, dairy, fresh veggies, citrus, pork, chemicals, deli food, artificial sugar, corn, onion, no fresh fruits with seeds or any seeds or nuts.

Jasmine White rice and home made organic mash potatoes daily with organic chicken, chicken soup with veggies...

[Mossymoomoo in reply to NL88]

Hi, thanks for your reply. Does your daughter eat most things apart from gluten when in remission and mostly the foods you listed when in a flare?

[NL88 in reply to Mossymoomoo]

Yes, when she is in flare, she eats only limited food for a month or so. Then I add normal food little by little. She is gluten free all the time and limited corn and corn flour. Most of her food is organic and no chemicals or additives. Also I start with bowel flashes with Laxatives like Miralax and liquid pre colonoscopy fasting for 1 day to clean her colon completely and then I continue with diet and supplements.

Even though she had bloody diarrhea 15 times a day, the bowel flashes and fasting stopped it successfully. Her last calprotectin was over 3000 in flare and we stopped it and dropped in 1 month or so without serious meds like Biologic. She use 3 pills of Balsalazide with Megasporebiotics.

[Mossymoomoo in reply to NL88]

Thank you so much, I have never heard of a lot of these things like bowel flashes. We have been given no information at all, she was just given a prescription and told to take them every day and that was it! Thanks again for the advice.

[Annie31]

I absolutely understand where you are coming from, it seems like you are walking through a minefield constantly worrying what you should give her to eat or not!

My youngest daughter was diagnosed with UC when she was 11 years old. Her consultant at that stage was a paediatric gastroenterologist who was fantastic. Her advice where food was concerned was that every sufferer of this dreadful disease is different so she didn't advocate a diet, only that to let her eat what she liked or fancied and if it had detrimental effects then put it on the list of 'no-no's'! Try again a few months down the the line because as she got older she might be able to tolerate it better. Now we found that Rice Crispies for breakfast was tolerated very well compared to other grains, eg. Corn flakes. Porridge or Ready Brek worked well with her also. I'm trying to remember here because she's thirty years old now! She couldn't tolerate sweetcorn, broccoli, and strong greens, lettuce. As she grew older she was transferred to adult services and again she had a super consultant and still has. He maintained the same dietary advice as her previous consultant. Now, my older daughter was diagnosed with UC at 26 years old much to our shock. Now she has never been so bad as her sister thank goodness and most of the time over the years she has been in remission. She can drink alcohol, she loves spicy food in particular jalapenos, the hotter the better! Pickled onions, anything pickled in fact whereas her sister can't still. No bad effect on her whatsoever! Just the stress she causes me watching her eat all this stuff. She can't eat lettuce or broccoli either. Having said that she's not a dairy person but she does eat those Danone probiotics yogurts for breakfast.

I think you really have to play this all by ear but not get phobic about it. Hope this helps.

[Mossymoomoo in reply to Annie31]

Thank you, this really helps. My daughter is 20 and loves similar things to your youngest. Spicy food and alcohol. I think she’s in denial a bit about having UC so it makes me happy to know she should basically continue with her diet as it is and cut things out if needed. I don’t want this to take over her life but need her to take it seriously enough to know she needs to listen to her body and read the signs. It’s awful to watch and not know what to do when she has a flare up as I’m sure you’re more than aware. Hopefully all this advice will help keep her in remission as much as possible and help us help her during a flare. Thank you.

[Annie31]

You are right in that you want her to take it seriously but I suspect she does actually a lot more than you realise. If she lets this disease define her life she won't have one and it's a difficult age for her to have to deal with it. Because you can't see it doesn't mean it's not there but her friends won't always realise that and she wants to do and be the same as them. Most people just think it's a stomach ache with the 'runs' thrown in for good measure and have no idea of the other physical ramifications of this awful disease and then there are the side effects of medications. - double jeopardy - most of the time they're in a no-win situation. With the best will in the world it is their lives blighted not ours, however much we feel the need to help.

We were fortunate with the youngest in the fact that she was a child throughout the worst of it and we had more control but she also recognized how poorly she was and had to do everything she could herself to help herself. It was the eldest one who if anything went into denial over this because she had seen her baby sister suffer so much and she wasn't having it! Strangely enough she had an awful flare-up this summer, she's 45 now and because she had been in remission for so many years this shook her rigid! However in the end it was so bad she had to consult with the doctor and get meds and follow the rules for flare-ups and she's fine again now. This is because she's older and wiser. By the way this is the one who drinks and eats spicy foods, the younger one doesn't drink and does take more care of herself because she's had a tougher road to go down.

If you want to chat anytime about your worries etc just private message me. Have a good Xmas!

[Mossymoomoo in reply to Annie31]

Thank you so much, that’s made me feel much better. Have a great Christmas yourselves.