HELP! New to UC and Flare-Ups!

Introduction:

Tiernee with her son

a picture of Tiernee with someone speicial:)

29 year old single, working, educating herself, mother. Diagnosed Spring 2011. However have been on Asacol since 2008 since an eschemic bowel episode and run-in with a parasite during pregnancy. Wanting to get off all medication, achieve remission, and enjoy a bacon double cheese bar-burger when the fancy strikes.

The Colitis Experience So Far:

Hi Adam and All,

I am new to UC and flare-ups. During pregnancy in 2008 I had an eschemic bowel episode and was put on Asacol to help heal the 25cm of blackened colon. (perhaps anecdotal-I then got Cryptosporidium (a parasite) in the last two months of my pregnancy). I did not understand why I had to continue to take the Asacol as I thought my colon should have been healed. For two years I experimented tapering off and was not successful. I found a doctor who was willing to experiment and I went off the Asacol completely last spring 2011 and was miserable for months until the doc agreed to do a colonoscopy and biopsy and found that I did indeed have UC. I started the Asacol again and have not fully recovered to normal bowel movements. My son and I recently got a stomach flu bug or something which has totally set my colon off. My son was better the next day and me, after a 12 day prednisone taper and negative microbial stool samples I am still miserable….

Advice for eating/nutrition during flare-ups? Adam-I noticed in your smoothie post that you do not consume them during flare-ups? What do you consume?? I am at a loss. I am barely eating (bananas, soymilk, VSL#3, and ramen noodles-sometimes eggs- and often, chicken broth with quinoa and seaweed and tuna) and getting very weak and tired. I have to hold down a full-time high-stress job, mother an active 3 almost 4 year old, and take part-time classes to advance my career to support this diagnosis and my son.

It is my intentions to eventually get off drugs and have been looking into different diets and yoga and exercise routines. I just can’t shake this flare though!

Any advice would be much appreciated.

Colitis Medications:

Asacol usually works

Lialda was very expensive and didn’t see the same results as Asacol

recent 12-day prednisone taper-eh

VSL#3-just started this a couple days ago…

I take tons of vitamins….women’s-multi, Selenuim, Vit E, Vit D, super B’s, super Omega’s, cod liver oil, tumeric, garlic–all mostly organic from health nut stores

also experimenting with Aloe Juice (the inner fillet) with this flare

 

 

So thankful for your time,

Tiernee

submitted in the Colitis Venting Area

12 Responses to “HELP! New to UC and Flare-Ups!”

  1. StephanieJanuary 10, 2012 at 7:04 pm #

    Hey Tiernee,

    I am just coming out of a flare-up… it will end, it takes awhile! (took me over 3 weeks, it has taken much longer other times)

    I eat LOTS of soup! At least once a day, if not for two meals. I make the SCD soup… chicken with bone, carrots, onions, some herbs… I don’t eat the onions though and I strain the liquid after deboning. I cook it in the crockpot for about 6+ hours so the bones begin to break down and the carrots get nice and soft.

    Eggs for breakfast, snack, anytime. Sometimes the soft yolk can upset a stomach, so I tend to make sure they are cooked when I am flaring.

    Bananas with spots, I’ll freeze some too just for a different texture to mix it up.

    It seems I sort of do the intro diet to the SCD when I have a flare up… protein is super important and that chicken/beef broth is as well! (homemade is better!)

    Adam mentioned in the video that he can sometimes see parts of the tomato (I think?) in the toilet when he is flaring, and I can as well… basically if I can see something, I know it didn’t digest so I steer clear.

    Good luck, and get LOTS of sleep!!

  2. AdamJanuary 10, 2012 at 10:44 pm #

    Hi Tiernee,

    I think Stephanie has some really good advice in her comment above.

    Here is a link to a 20 minute video which details all of the food I ate several months ago to get out of a flare, and it worked really well for me. http://youtu.be/eGiyPF3w1iA

    let me know if that gives you and idea of foots to eat.

    at the end of that week, actuallly a day or two after filiming it, I started making smoothies once again…..wow did I miss them.

  3. Edgar
    EdgarJanuary 11, 2012 at 12:12 am #

    Hey Tiernee, first off I guess the most important thing that I’ve been reading from others in this site is everyone’s body is different and reacts differently to foods. It’s gonna be a lot of trial and error from your part but try to narrow down what makes the flare worse or helps it not be as bad. What I have been doing to not be so week during a flare is drinking a protein shake that I buy at my local fitness store (it’s like a GNC but smaller). Since protein is the driving force for a body to function then I figured that it would at least help out with the weak feeling I’d get when I was flaring. I didn’t just go out and buy any protein shake though, I made sure that it had a time release which would last up 8 hours and that it had the leanest amount of protein mixture in it. I ended up buying one called Intek Evolution and it seemed to help me out. It’s kinda pricy online so I found it at my local small store. I’ve also read that strawberries are great for UC’ers since its full of antioxidants and helps with inflammation (which is one of the things that UC is, an inflammation). Hope this tidbit of info helps but like I said before everyone’s body is different so just trial and error this illness and see what helps you. Good luck and best wishes dude!
    -Edgar

  4. Stevie B.January 11, 2012 at 3:03 pm #

    Tiernee,

    I’m feelin’ you on the bacon cheeseburger. In fact, I had one about three days ago just before I kicked off a new, strict diet plan. It was a new job celebration/gonna not eat another one for awhile kinda thing and it was good. Five Guys, baby. The manager actually just gave me fries for free because I said I wouldn’t eat a whole order and thus wouldn’t pay for them. (all you SCD suckers can sop judging me. I’m new, ok?) Ha ha ha!

    Cheeseburgers aside, I would suggest you do some research on the SCD diet. There is a lot of info on Adam’s site, certainly plenty of links to find more elsewhere. I think any way you look at it, the principles of this diet could really make a difference in our lives, even if you can’t stick to it 100%. I think Stephanie’s advice sounds good to me too. Eggs are definitely good, as is chicken and fish. You gotta ditch the Ramen noodles though – nothing but junk carbs and MSG, if I remember correctly.

    I’ve heard mixed reviews on the aloe products, even the really high-end ones. Because aloe is made up of polysaccharides, it is a complex carbohydrate. My understanding is that complex carbohydrates are one of the very things our colons have a hard time handling when they are jacked up like this. I tried an AMP called Serovera for about three months some time ago and did not notice any difference, except in my bank account. But hey, I’m not an expert – still trying to find my way too. : )

    Your son is very precious, by the way. I hope to hear that his mom gets all patched up and back to living without all the crappy distractions soon. : )

    Steve

  5. George in NapaJanuary 11, 2012 at 3:47 pm #

    Hi Tiernee,
    Edgar is right…. everyone’s body is different and reacts differently to foods.
    I am taking a lot of the same things that you are… a high potency vitamin, turmeric, Omega-3 fatty acids, garlic and VSL#3. I also do juicing, mostly red cabbage and carrots with fresh ginger and I follow a lot (but not all) of the SCD diet. I also do smoothies every day but they do not seem to bother me during a flare like they do Adam. Despite doing all this I still sometimes still get a bad stubborn flare that won’t go away. When this happens I usually wind up taking prednisone (40 mg then tapering down). The pred usually puts the fire out but taking it drives me nuts plus gives me insomnia. I have been taking mesalamine (which I don’t think is working for me) and will discuss switching to something else when I see my GI doc later this month. I have not yet found my right combination for a long term remission without taking drugs, I will keep trying different things until I do. One thing for sure, I gotta find some way to ditch the prednisone.
    Like Stephanie, I also eat a LOT of soup. I make homemade vegetable soup and usually add stew meat or turkey. As Edgar said… its gonna be a lot of trial and error.
    We need to keep trying new stuff until we find something that works.
    Best wishes,
    George in Napa

  6. bbalanzdJanuary 11, 2012 at 6:27 pm #

    Tiernee,
    Too late for me – had my colon removed this past February. But, what I did do afterward was have my food sensitivities tested. I did this through a Naturopath who sent a blood sample away. I thought it was important to know what specific foods are not good for my body, because as already stated, everyone is different and trial and error can be a long arduous task. Anyways, I was surprised with the results … nothing cow related for me – no beef, no dairy, no egg whites and no gluten. If we avoid foods we’re sensitive to then we minimize any inflammation in the body, especially the digestive system. Hope this helps.
    Best of luck
    Bbalanzd

  7. Tiernee
    TierneeJanuary 12, 2012 at 9:24 am #

    Hey thanks everyone! I’m writing back from the pot hoping to clear out everything from yesterday before I head to work ;) (sorry I have to maximize my time!) I haven’t watched your video yet Adam…doing that next!

    I think it would be very good for me to find out my food sensitivities. I’m going to bring that up to my doc when I call in the next few days saying I’m not getting better. The prednisone taper seemed to be working until I inadvertently ate crackers with brown rice flour….I cannot tolerate rice in any form since Spring 2011. Good idea bbalanzd!!

    Yes, Steph when the shredded carrots from my no-noodle veggie lasagna came through clear as day I knew it was not time even for cooked veggies. Looking at all kinds of diets. Bought a beef flank today to make broth following some of the ideas of the GAPS intro diet. I have natural aversion to hunks of animal fat but this broth info is consistent with healing info I’ve received in the past so I’m gonna try it.

    George! I juiced red cabbage, carrots, pears, oranges (i know acid bad) the other day. I needed those vitamins! I went to a health bulk store and bought rose hips to make tea and get some added Vit C from there.

    I know I’ve gotta ditch the Ramen Stevie B. but it’s so soothing :( Okay, I’ll make some homemade broth instead :) Otherwise mornings with a VSL, pumpkin, banana, soymilk, cinnamon smoothie have been sitting well. Juice and popsicles (bad sugar, sugar bad) the rest of the day. I know I’ve got some work to do in tweaking my diet and I’m researching and working on it…

    I’ve been looking into protein powder Edgar…I can’t do dairy, and now I can’t do rice…I haven’t found a formula without either of those yet. Thanks for the strawberry info, that’s good news cuz I love strawberries! When at the bulk herb store I ran into a lady grabbing for the same herbs..Slippery Elm in particular. I don’t usually go out on a limb and start conversations with strangers but I’ve been trying to change that lately and grow and glad I did. Coincidently she was concocting a tea for a friend of hers with colitis! She gave me a copy of the recipe…although it was originally used in Canada as a cancer treatment by a lone nurse, she thought it would be good for any physical ailment. It’s called Essiac.

    Anyone heard of it?

    • AdamJanuary 12, 2012 at 10:58 am #

      Good luck Tiernee,
      I’ve never heard of that tea called Essiac, but let us know how it goes if you give it a try! Maybe some others here have heard of it.

  8. Tiernee
    TierneeJanuary 12, 2012 at 9:51 am #

    Alright Adam, I’m boiling some eggs for break tonight :) I have actually been eating those. I mashed some up with avocado the other night…not bad. I’ve been hesitant to eat meat though. Just mostly scared of how it will come out….we’ll see. Gotta try somethin. This has to be over by next week Wednesday when I start classes again!

  9. AmyJanuary 14, 2012 at 2:40 pm #

    Hi Tiernee,
    I was so shocked when I read your post because I’ve never heard of anyone else that has had Cryptospirdium. I also have a 3 year old, but unlike you, I got my parasite when my daughter was about a year old. It was hell. I’ve recently been diagnosed as well and am waiting for my colonoscopy. I’ve taken sulfasalazine for about a week and a half and my flare has all but gone away. HOWEVER, I will not say that this is all because of the meds. I don’t believe it is. I’ve been doing the SCD diet for about a week and I swear it works! Like Adam said, whatch his video that shows his (very humerous) account of his last flare. That’s essentially how I’ve been eating for the last week. Leave out the carbs and just do protein (meat and eggs) and some cooked veggies at the beginning along with some ripe bananas. It works! I went from about 10 bloody, horrible bowl movements a day to 1! Good luck to you and hang in there!

  10. Tiernee
    TierneeJanuary 28, 2012 at 8:43 am #

    Yeah, crypto was lame! There was an outbreak of it years ago in Milwaukee, WI. Tons of people got sick. Gross little parasite.

    I have been doing pretty good. I skated out of a full scope–like, down the mouth and up the whazoo and was put on more prednisone for longer, an acid blocker, and an anti-biotic for c.diff (even though I tested negative doc said it’s actually good for patients in flares). The day after I started taking all this I could see/feel a difference. Two weeks later, definite improvement. I tested negative for rice, milk, and gluten allergies but was told to stay clear if I felt they were problematic. So still eating good stuff and plan to keep it that way. The things I used to eat don’t really appeal that much anymore. Quick breads especially (I found an interesting theory on the time bread is allowed rise and the amount of gluten in it. I found it on a Native nutrition site but can’t anymore. Something like the Bread Act forced bread makers to alter recipes and add preservatives and crap and rise bread for only two hours versus overnight that allowed the yeast to break it all down to a more digestible form that even gluten-sensitive persons can tolerate). I like experimenting in the kitchen so it’s kind of fun blended up nuts into flours and trying to make pumpkin pancakes :) First attempt was a fail by the way and ended up baking it in the oven like a custard but super yummy warmed up with soymilk poured over the top! Anyhow, hope to keep healing and learning as much about this as possible in hopes to help others!

  11. crystalApril 4, 2014 at 7:02 pm #

    I am new to ulcerative colitis. I am in the middle of a flare up that has last two and a half months, which is how I found it. I was in the hospital on and off this whole time before they found it. Ihave not been able to eat or drink anything until I started steroid shots four days ago. I’ve lost 60 lbs and I am very weak, and need to start eating but I am so scared since before even water would leave me in so much pain. I need some easy things I can try so I can keep what weight I still have and help me get some nutrients to get passed this bad flare. I can eat bananas, white rice which I put a little butter in, and eggs. Is there any go to flare foods you guys can suggest??

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