Ulcerative Colitis Tips


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Dreading the End to My Love Affair with Good Food

Introduction:

I am a 44-year-old Career Mom of 2 teenagers in Albuquerque, NM. I was just diagnosed with UC last week after a colonoscopy. I have never had any health issues or digestive issues before. I have a semi-stressful government job that I love and I recently received a big promotion with a lofty title. I am blessed to have great co-workers, good benefits, and a flexible work schedule, including the ability to work from home as much as I need to, which, lately, has been 5 days a week!

Some more about me:

I enjoy fishing, photography, scrap-booking, sewing, and cooking (I am addicted to the Food Network!) I’m also an avid reader (mostly fiction, but lately have been reading a lot of books on leadership and management, due to a recent promotion.) I work long hours during the week, so I tend to be a bit of a hermit/homebody on the weekends because that’s when I relax and recharge (and clean house, do laundry, run errands, and all of the other tedious things working moms have to do on the weekends.) Normally, people describe me as “highly energetic,” but lately I’ve just been a slug.

Colitis Symptoms

I am currently trying to recover from my first Ulcerative Colitis flare. I have lost 35 pounds since December and have had chronic bloody diarrhea for two months, although it is starting to get better. Feeling very weak and lacking energy (I seem to be ready for a nap every day around 3:00!) and I don’t know if that is the UC, or the fact that I’m probably eating less than 500 calories a day (mostly vegetable soup, rice, saltine crackers, pureed cooked carrots, avocados, plain pasta.) I had a couple of weeks with some abdominal pain and vomiting, but that has subsided now that I’m taking the medications and eating only easy-to-digest foods. Biggest problem was the frequent trips to the bathroom, which is difficult when my job requires me to be on conference calls up to 4 hours a day. Like others have mentioned, I have an ever-present fear of leaving the house.

Is My Food Love Affair Over

My biggest frustration with UC is all of the contradictory information out there about diet. One source will say no potatoes, another source will say potatoes are okay as long as you don’t eat the skin, another source will say only sweet potatoes, and yet another source will say neither one should be consumed.

ARGH!

My primary care doctor wants me to go no meat (except fish) and no dairy. (After she told me that, I cried all the way home.) But, then I look at other diet plans, like the SCD, and they say most meats are okay. Seriously, what the heck? Over the last few weeks, it has been really difficult to bring myself to cook for my kids–just looking at food, let alone preparing it–made me want to heave. I don’t have time to cook separate meals, so I pretty much cook something for them and then resign myself to a bowl of rice or cup of applesauce, which makes me resentful. A couple of times I called my ex and told him, “you need to get over here and take your children out to dinner because I’m too sick to feed them.”

I’m hungry all the time, even though I don’t want to eat because I’m so bored with the bland diet I am currently trying to follow. Consequently, I’m cranky all the time. (I told my kids, “now I know what it’s like to be a supermodel and STARVING all the time!”) The only plus side is the weight loss because I am overweight and need to lose another 50 pounds. But even that annoys me, because the scale at the doctor’s office weighs me about 15 pounds heavier than my scale at home (what is up with doctor’s office scales?) I have ordered a bunch of books on UC and anti-inflammatory diets, trying to learn all I can and make some sense about how I can manage this disease.

I do have to travel periodically for work, and I dread having a flare while in travel status. I also need to figure out how to maintain a diet (whenever I figure out what that diet should be) when my only options are hotel/restaurant meals. I was lucky that this flare happened over the holidays, when I happened to be using up 2 weeks of vacation time, but I almost never take time off from work, so I dread what I will do in the future–set up my laptop on a TV tray in the bathroom?

Yuck!

Colitis Medications

Since the colonoscopy, I am taking flagyl (for an infection), folic acid, Omega 3 supplements, and sulfasalazine. I see my GI on Monday, and he may prescribe prednisone at that time, but I’m hoping to avoid it. My mom had rheumatoid arthritis and had a lot of problems with both sulfa drugs and prednisone, so I’m reluctant to rely on medications. I’m really hoping to have some success with an eating plan, but that seems to be even more confusing than medications!

written by Mizz Min NM

submitted in the colitis venting area




15 Responses to Dreading the End to My Love Affair with Good Food

  1. fern February 23, 2013 at 7:25 am #

    Hi MIzz.I know how you feel.Its really hard changing your diet especially when having to cook
    for others.And like you said its hard to figure out what you should be eating for UC. I have had uc for 28 yrs now
    I have. Been blessed has been mosty controled.first 25 yrs on sulfasalizine.flare in 2005 switched to colazol..still controled mostly.yearly
    Colonoscopys always come out fine..few symptoms except tired all time,and more than normal persons bms a day,but even then mosty
    Formed.Im a51yr female.so pat year hadn’t really been taking my colazol.but my last colonoscopy showed infamed colon thru out,biopsy,s
    About 90 of them came back dyspasia,so gi dr calls me in wanting me to take biopsys to mayo clinic,start some other harsh meds.imuran
    Which wipes out your imune system can cause cancer.all this while feeling pretty good.after reading up on the mew meds.I refused to take
    Them.don’t want to die from simple infection.but I have started taking my colazol as schduled.to control imflamation.aded probotic,evol.cut out all
    Grains except rice,dariy,sugar,raw veg.s and fruit.basically just eating sm amt meat,rice,avacodo,greenbeans,asparagus,peas.banana,sm. amt. creamy
    Peanut butter usually on banana.And I do feel less bloated,less acid reflux.also have switched to decaf coffee.read somewhere caffine,carbanated
    Bev. Acidic foods like tomatoes,which I love not good.anyway its easier to do when your faced with the talk about you may eventually lose your
    Colon.and after having UC over 8 yrs.high risk for cancer.I had 28.If I could do it over again I would of been on a bland diet all this time and stayed on my meds.the whole time.This site has been such a comfort to me!God Bless Adam and all his hard work.good to know your not the only one.
    And here what helps others.Hope all goes well for you.I would say stay on your meds.,and diet.maybe add probiotic.and cont. Explore this great site
    God Bless!Hope it starts getbetter for you!

  2. Angela February 23, 2013 at 7:37 am #

    Hi Mizz Min!

    I’m sorry to hear about your recent diagnosis! But don’t worry! It’s not the end of the world! I’ve had UC for 10 years and it does get better and you won’t have to worry about leaving your house. Many of us on here still so everything we want. I lived in Europe for a year (including many LONG flights) without problems.

    When it comes to the diet, you can’t always follow everything to the “T”, because not everything causes the same problems for everyone. I’m a huge foodie (food network, cooking channel, punchfork) and I ended up making my own diet. I don’t follow the SCD but I am careful about highly processed foods and carbs. I eat whole wheats, oatmeals, and Dream Field’s Pasta (its amazing! just like regular pasta). And I eat potatoes whenever I want as well as I’ve never cut out dairy. I just usually cook everything from scratch…no preservatives, no chemicals to irritate my intestines. What you should definitely avoid are artificial food colorings, pop, NSAID pain relievers (advil, aleve, asprin…only take tylenol for pain) as they all cause intestinal inflammation. As far as everything else its trial and error to see what you should avoid. Your lack of energy is both UC and not UC related…its because when your in a flare your intestines are being damaged and cannot perform their duty of taking out the nutrients you need (hence weight loss and low energy) also, your current diet isn’t providing enough on top of it so take mutli vitamins (especially vitamin C and B12).

    Since you were put on Flagyl you should take a probiotic (talk to Deb about it). My grandmother and aunt both had rheumatoid arthritis as well along with other relatives having other autoimmune diseases. There are two main schools of thought (there are others) on what causes UC…bacterial problems or your immune system attacking your colon. Bacterial and the others can all be treated probably without medication just diet alone. But if its your immune system (like me) only immunosuppressors will work (diet alone can’t fix it). So make sure to talk to your doctor about all options to see what will work for you whether its diet or medication.

    Good luck! You’ll get through this! :)

    Angela

    • Angela February 23, 2013 at 8:07 am #

      Meant Bev for probiotics…apprently I’m not that great of a typer!

    • Jenny Mom
      Jenny February 25, 2013 at 11:25 am #

      That last paragraph explaining why some UC responds to just the diet and others need the immunosuppressers made me go “OHHHH!” out loud! Thanks for sharing! I was feeling the same frustrations, wondering why some people raved about diet and others said it didn’t work at all for them.

      • Angela February 25, 2013 at 4:34 pm #

        Hi Jenny!

        I was lucky to have multiple great GI’s over the years who were great about explaining everything to me very detailed. I also have a brother who just finished med school and I’m always bugging him for new research papers (even though its not his specialty haha that’s what siblings are for right?). I wish it was easier for everyone to know upfront what’s the cause so they can right to making it better!

  3. Adam
    Adam February 23, 2013 at 9:27 am #

    There’s a couple of things that I think you’re going to realize pretty soon. First thing is that all GI doctors (and primary care or any other sort of medical doctors for that matter) rarely all agree on topics/ideas etc… especially when they are about UC. It’s been like that for a long time, and I pretty sure that’s one of the few constants that’s here to stay. That said, we all still must move forward, and we will.

    Also, as for diets, there are many different types of diets, some vary wildly, and others are so similar, you have to pull out your microscope to find the differences. It does make it more difficult to understand, but that’s not the end of the world. What is really great is that many UC’ers have found great results with many different diets, and you don’t have to go far to read about those experiences. So much like medications, diet/dieting is not a one size fits all (unfortunately) but like medications, there are positive symptom transformations for many folks. I’d suggest to you that once you have read up on several “diets” if one seems to “make the most sense” to you, or seems like it would work best depending on your food likes/dislikes, why not give it a go…

    As for travel, I highly suggest preparing as much as you reasonably can before, during your trips. I just finished up a two month journey around Eastern europe and Italy, and had we not prepared food prior to all days of travel (on trains with limited/no food options or buses) things would have probably gotten ugly for me. it definitely takes more time an planning, but maybe if you can make up some food and stash it in a plastic bag/box before you shove off from your house, and the same with grocery stores, that might help. If you can in any way request to stay in hotels that offer small kitchettes (which many do these days) that might also help you out. But you don’t have to have a kitchen to make this work, although heck yeah it sure does make things easier.

    I wish you the very best no matter how you move forward,

    -Adam

  4. Lynne February 23, 2013 at 1:26 pm #

    I can totally relate to your frustration with the contradictory information regarding diet. But, I’m learning, as others have said, to notice what works for me & my body. I can also relate to being hungry constantly and unable to eat. Such an awful feeling … & the resentment that can come when everyone around you is eating their fill. Like you, many of my meals consist of vegetables & rice. Sometimes I just long for a substantial amount of food … something really yummy & filling! I, too, would also recommend you take a multivitamin and some good quality probiotics, esp since you’re taking an antibiotic. You may be anemic due to blood loss -another reason for lack of energy- so you could consider taking iron, although I’ve heard contradictory information on that as well. Vitamin D and L-Glutamine are also recommended for people with UC. These are all good things to research anyway to help you along your path towards healing. Good luck! Better days will come. :)

    lynne

  5. KimberlyHI
    Kimberly February 23, 2013 at 7:06 pm #

    Mizz Min, I love food too and the food network is my all time favorite channel. My favorite show is chopped. It is very frustrating having UC and trying to figure out a diet or medication plan or even how the heck am I ever going to get better…I know many people use olive oil to help their UC, yet I was just reading an article that said some sort of acid in olive, coconut oils, and other things can make UC worse…yet people are actually seeing positive results using these oils. I see go dairy free most the time, sometimes gluten free other times low fiber, ect. It is very confusing. I talked to my doctor about it, he said if I could take you off all your meds and knew exactly what diet to have you eat to treat your UC, I would, but the truth is the diet that works for one person will not work for others. He recommended no fast food and no processed foods. That can be hard especially for this fast paced world we live in, but we kind of have to in order to get better. Angela is right, you have to basically create your own diet that works for you, maybe use SCD or other diet plans as a guide but make it your own, because we are the ones who know our bodies and what makes us sick.
    Good luck, you’ll find something, and your food may have to change but you will still be able to enjoy many delicious foods!

  6. MizzMinNM February 23, 2013 at 8:51 pm #

    Thank you, everyone for your comments! I am so happy to have found this site! In the time since I first vented, I have purchased new cookbooks and found many, many recipes that have been very encouraging! I love to cook and avoid processed, packaged foods anyway, so this should not be a problem for me. While I did have to start taking prednisone, I have not experienced any adverse side effects (I actually lost another 7 pounds! Take THAT prednisone!) I have come to terms with diet issues and have been spending my weekends preparing dishes I can reheat and take to the office with me and planning meals for my kids where they can have what they like, try some new dishes, and if I fix them something I should not have, I fill in with some leftover soup or just eat the cooked vegetables. Unfortunately, this week I am having a bit of a setback, returning to the bathroom 10-15 times a day with diarrhea. GI doc increased my prednisone dosage and switched me from Asacol to Lialda. He is concerned that I am still having so many BMs and diarrhea. I am also taking omega 3 supplements and a really good probiotic (Ultimate Flora critical care by Renew Life, which I believe has been recommended by others on this site.) My energy is great, and I am back to work fulltime and taking on home improvement projects on my weekends. I am trying to avoid dairy, wheat/gluten, red meat, sugar, and raw vegetables and certain fruits. I have/also started a Food/BM diary to help me figure out what my triggers might be. I also bought myself an Audi convertible, something I have fantasized about for a really long time. I think I deserve it!

    • bev February 24, 2013 at 9:39 am #

      OMG…just read your post above and YOU ALREADY ARE taking the best probiotic out there as far as I am concerned!! Good on you!! That’s the very same one that I am on…and in remission on…along with the famous L-glutamine taht I speak of over and over…I am on no meds and can eat ANYTHING…except too much wheat!!

      Life can still be GOOD! Trust me:)

  7. bev February 24, 2013 at 9:37 am #

    Losing weight always seems to make us gals happy…but it just ain’t no fun losing weight the UC way!

    I know that the whole ‘diet’ thing is hard to figuyre out, as we are all so different in this so called ‘disease’. Some of us can eat whatever we want, while others can eat almost nothing and it bothers them. It is all so confusing and fristrating! There is no ONE answer…

    Your doctor, with only good intentions, I’m sure, has recommened the ‘textbook’ solution to you, diet wise. That does not mean it will work for YOU, tho. It’s really trial and error with each one of us…for example, it took me 15 years to figure out that wheat gives me problems. I can eat pretty much everything else, but too much wheat, and oopsie!

    Don’t despair about losing your love affair with food! It does not need to be that way! It will take time, but if you work at it, you will find out what you can and cannot tolerate!

    BTW, DO incorporate a GOOD 50+ billion strain probiotic (not a run of the mill probiotic, but one that is recommened for UC!!) into your daily life! Everyone with UC should do this!! Take it on an empty stomach, with water, and try not to eat for an hour after…if this is difficult…get up at 2 or 3 am, take it, and go back to bed.

    Cheers
    :)

  8. joanna February 25, 2013 at 9:08 pm #

    honestly, proteins are the easiest thing for your body to digest since they get digested in your stomach. they don’t sit around for a while like carbs do and ferment. i follow SCD myself and have found a decrease in my symptoms. i eat tons of meat and it has cut my stool frequency done a lot.

  9. Anna in DC
    Anna March 5, 2013 at 8:59 pm #

    I feel your pain – in more than one way ;) Giving up so many delicious foods is definitely one of my struggles, because in those moments that I DO feel well, all I Want is a freaking donut. You will PROBABLY be bombarded with advice and different diets to try, and you will hear scary things about meds – and all of it will seem overwhelming if it doesn’t already. And as it has been said before, everyone is different… but after 8 years with this – four of them in remission after the Maker’s Diet… I am back at square one and having gone through the entire overwhelming process once more, I have seen more and more testimonials of UC sufferers being completely healed by the GAPS diet. THe intro IS SO HARD – I’m dying here only sipping on soups and broths and ginger tea… but, ultimately, I am confident that this will create true health in my gut, eliminating the need for meds – and once healed, the diet includes MANY MANY delicious and wonderful foods. Check it out! And find what works for you. It’s a long process no matter what diet you choose, but hang in there!

  10. MizzMinNM March 19, 2013 at 10:48 pm #

    AUGGHHH!!!! I am so FRUSTRATED! Six weeks later, and I am STILL taking 40 mg of Prednisone, and now I have learned that Lialda is, apparently, made from ground DIAMONDS because, without insurance, it costs almost as much as my monthly mortgage payment (THANK GOD for Health Insurance Coverage–have never appreciated it more!) I am STILL on the toilet 12-15 times per day, despite taking the most expensive probiotic available, Omega 3 supplements, eating nothing but cooked vegetables, etc. In fact, I am convinced it is impossible to control this “condition” with diet. If I eat nothing but canned pears, avocadoes and butternut squash soup with turmeric, 6-24 hours later, I am still pooping 15 times a day. I complain to my primary care physician, and she tells me that getting off prednisone will actually HELP with the BMs. My GI tells me I need to KEEP taking it until I STOP having irregular, frequent BMs. Personally, I think both of them are in cahoots and happy to have a patient with insurance coverage to string along.

  11. shelly in maine March 20, 2013 at 1:05 pm #

    MizzMin almost missed your panic post! Whoa back the nongravy train! OK…breathe…first..you’re making it 6-24 hours?? Awesome…that has to be a great improvement? How about blood and urgency and consistency of bm’s? Baby steps! Don’t forget by being on nasty flagyl you depleted a lot of your good-guys gut bacteria…it takes time to restore. Did you have cdiff?
    As far as diet..I did SCD for a few months and found I had to still give up yogurt (not homemade)and milk and you also need to be careful with cheese and eggs and the almond flour. (I use coconut flour mostly)

    I have had UC forever and 1 thing I know for sure about UC is that it is not a one size fits all disease. What works for some may or may not for others or various amounts. Make sure to keep a journal. Understand that baby steps are very important…there is a lot of damage done in there that needs to be fixed and takes time. Someone once explained it like a skinned knee you keep falling on and ripping open. Also understand soluble versus insoluble fiber. As of recent I have added back in oats and rice and feel a lot better….that’s just me. Smoothies are great.
    Hang in there and know you are healing your body..it just takes time. Oh 1 more thing…sometimes the meds may be causing the symptoms! Ironic.
    Best, Shelly

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