UC: New looking for advice.

[parabola66]

Hello Everyone,

I am new to the forum and figure I would introduce myself and give a little background on where I am with UC. I am looking for advice as I have been flairing for quite some time. I was diagnosed with UC when I was 2 years old and since then it has been a merry-go-round of remission, flairing, hospital stays ect.. I am sure everyone knows the deal. I have been doing alright since I was 13, now 24, after some corrective surgery of a rotated bowel.

For the past 4 years, since I have moved on from my pediatric GI, I have been struggling getting into and staying in remission. I am running out of medication to try and things are pointing more toward corrective surgery, as per my doctor.

I guess this is where my question is. What types of diets have people had luck with? Are there any supplements to look into? I think a huge part would help if I changed my diet. Right now I eat what I want and is usually greasy fatty foods.. unless I feel terrible that day I may opt for a salad.

My current state as for this past year has been just above dire. I usually have burning in my stomach that continues throughout the day, as if I drank a bottle of hot sauce, no amount of tums or anti acids seem to work. I can't travel far distances and even the thought of getting in a car gives me anxiety. I have had 2 accidents in the past year. Nausea either gets worse or better throughout the day which effects my appetite for the day. Blood in my stool varies from day to day With my current medication I don't seem to be getting worse, but I also see no improvement. The only thing I think of that I can change is my lifestye. I want to start exercising and bodybuilding again but I can't take care of my body if it can't take care of itself.

List of medications over the past 4 years & Predisone tapers when needed:
Pentasa w/ 6mp
Asacol w/ Humira
Lialda w/ Simponi
Asacol w/ Remicade

CURRENT: Lialda w/ Remicade and 6mp & just finished a 30day round of Uceris which seemed to have no effect.

Medical Marijuana has been suggested by my doctor but this still only in the planning stages.

I am sorry if this post was drawn out and if you managed to make it through advise would be greatly appreciated.

 

[Ttoz]

I have been on all the drugs possible in the last 2 years (including some cutting edge ones back in 1995) and recent ones that contributed to almost dying from sepsis. I haven't had any luck and continue to get fistulas. Diet has been the best treatment so far! I went from the caveman paleo (4 months of not eating unless you're really hungry.. ugh) to (and currently) just eating organic and gluten free. I have been eating gluten free for about 7 months now and I got to say it was really hard at first, but now it has just become "normal". Heck even Dominos has a gluten free crust. You pretty much have to give up fast food and start grocery shopping. Make enough dinner for your lunch the following day! My recent visit to have a flexi-scope showed no tissue inflammation. It didn't fix the fistulas but I hope it will stop more from forming. I think diet is more important than ever now-a-days! Besides I'm pretty sure food was designed to keep you healthy and alive? How many wild animals are overweight and eat just because they're bored or the drive thru came up with some new spicy cheese sauce? Eat good food my friend, it might save your life.

 

[jwfoise]

I guess this is where my question is. What types of diets have people had luck with? Are there any supplements to look into?

Hi parabola66.

My UC is pretty moderate, so I don't know if what I say is applicable to you.

My trigger does not seem to be food; I've never found a food that particularly causes me problems. My big trigger is stress.

I currently take Delzicol. I also started taking a probiotic about 5 years ago (after discussions with my gastroenterologist and a couple of test runs). The probiotic does seem to help. It doesn't prevent my flares, but it does seem to mean they last for days instead of weeks.

 

[parabola66]

Stress is a huge trigger for me. Food is only bothersome during a flare. I can eat what ever I like without the slightest issue when in remission, but since i haven't been in remission in a year so I think my diet is another thing to change as I have tried a lot of Rx combinations trying to get my UC under control.

 

[sickinlk]

Yea same here. I ate whatever I wanted when I was in remission. Now I'm on low residue with ensure for a boost of iron and vitamins.
Med wise I'm currently on 6mp and predfoam. Hoping to get back on remicade in the next few weeks.
Remicade put me into remission and I stupidly wanted to try without it. Meh!

 

[FrozenGirl]

Welcome!

For me diet doesn't help but some people swear by the Specific Carbohydrate Diet or IBD-aid diet.

Otherwise medication wise you still have a couple options. If you have been on 6mp for oy a month then it might still work, it can take up to 3 months. Otherwise you might try Entyvio ( a new but specific biological with a different mechanism of action than Remi/Humira/Simponi. Or Stelara which is another biologic but it is self injected. It's not approved for IBD yet but some people have had great results on it. There is also methotrexate which you could add with Remicade.

 

[Om3ga1]

Have you tried balsalazide instead of pred?