I'm new here : Ulcerative colitis

[Healthsupport]

Hello, my daughter has suffered terribly badly from Ulcerative Colitis for about 5 1/2yrs. In the first 19 months, she took Prednisolone on a regular basis as this was the only drug that managed to control it. As steroids is not a long term solution, she was on a 6-8 weekly Vedolizumab (one of the many biologics) infusions, which worked a treat for 3yrs allowing my daughter to lead a relatively normal life. Rather sadly, my daughter's colitis has become immune to the Vedolizumab and has now been prescribe Humira for the last 16 weeks, with anal enemas and steroids. Unfortunately, none of this is working. Additionally, she has also become rather bloated since being on Humira and has developed symptoms of a throat infection, incredibly dry skin and irritable eyes. We definitely do not want to go down the path of having an op.

My question is, does following a particular type of diet help? I would be very grateful for any suggestions that anyone can offer; holistic or medical.

Many thanks.

Regards

[willow24 Administrator]

Hi, there is no specific diet unfortunately. If you read some of the posts you will see that certain diets work for some and not others. I have tried dairy free, lactose free and gluten free with no effects. The only thing I find helps is a low fat diet. others swear by a dairy free or gluten free diet.

be careful with holistic meds and always get advice from gastroenterologist. certain holistic meds can interact with prescribed meds and it is not always highlighted in the literature

there are other biologics meds that can be tried, also has she ever had any of the mesalazine meds (asacol, pentasa etc) or azathioprine or mercaptopurine?

[Healthsupport in reply to willow24]

Hi there, thanks so much for your response. I guess re following a dietary route, it will be a matter of omission by trial.

I won't try anything holistic, except massages & acupuncture.

Tried all the enemas you have mentioned, Asacol does have some effect, was on Azathioprine for a long time too. Haven't tried mercaptopurine yet. Shall discuss it with the consultant during my next visit.

Many thanks.

[bantam12 in reply to Healthsupport]

Has she tried Asacol tablets ? I've had UC for nearly 50 years, diet wise I eat what I want but nothing high in fibre and go steady on fruit and veg, actually what most people would consider a "poor" diet seems to suit a lot of us !

I started on Asacol tablets about 20 years again and they have kept me in remission since and I just hope they continue to work, I control my own dose so can increase if I feel a bit dodgy.

I hope your daughter can find something that works but as willow said do be careful with alternative treatments and quirky diets as things can easily get worse rather than better.

[Healthsupport in reply to bantam12]

Hello Bantam12, she has tried Asacol enemas, but not tablets; we shall definitely look into it. I won't try any quirky diets as I couldn't agree more with you and Willow, but sometimes avoiding certain foods can help.

Many thanks, much appreciated.

[Georgecat in reply to Healthsupport]

Hi

I have had UC for 25 years.

Maintaining a dairy and gluten free diet makes a huge difference to me.

Recently I had some cheap mustard at a friends house never suspecting that it had wheat in it next day I started bleeding from my colon.

Like many others on this site I use asacol 2 daily keeps me stable but I tweek it if I have inadvertently had some triggers.

Also stress not good I do a daily spoken meditation using my I pad.Yoga helps too and lots of walking.

Namaste.

[Sarahvit]

Hi Healthsupport, I wasn’t going to reply because I only have a mild case of ulcerative colitis but saw you only had 3 replys. I don’t follow any particular diet but use a lot of cumin and turmeric when cooking for their anti inflammatory properties. I also drink pomegranate juice 🥤in the morning after I eat my breakfast for it’s anti inflammatory properties also since I can’t take any NSADS because of my kidneys. I hope I was of some help. I have a mild cause of ulcerative colitis so the generic Asacol keeps mine under control. My stepdaughter has Crohn’s and was on humeria but she ended up having to have surgery which helped for about 3-5 yrs before it returned. She has had a hard time with it. She is 29 so not sure what she is taking for it now.

[Healthsupport in reply to Sarahvit]

Hello Sarahvit, many thanks for your response. My daughter does take turmeric tablets daily, and now will give cumin and pomegranate juice a try. She is currently on Asacol, which doesn't seem to be as effective as when she used it 4yrs ago. We'll try all alternatives before even thinking about having an op.

Good luck to your step daughter.

[Sarahvit in reply to Healthsupport]

Thank you. She is leaving on a carnival cruise 🚢 ship today going to the Bahamas. I hope she finds relief with the anti inflammatory alternatives. I do have some flare up with the ulcerative colitis so I know her pain.

[Healthsupport in reply to Sarahvit]

Wishing your step daughter and you all the best and all limbs crossed, the UC stay abay!

[Sarahvit in reply to Healthsupport]

Thank you, they are on the cruise now. Praying her Crohn’s behaves it’s self so she can enjoy all the good food.