Ulcerative Colitis Tips


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Q&A About My Experiences with the SCD for Colitis

Below is an email I received from Sarah who also submitted her story in the Colitis Venting area a few weeks back.  I wrote her to ask how things are going, and she had some questions.  After she agreed for me to answer them with a video response, I shot a quick video for everyone to see.  The video part is two short movies you can see below.  I think you should read Sarah’s email first so the video responses below make more sense. (Thanks Sarah for submitting your story, and I hope this helps to give you some ideas on some of your questions) Now for the email from Sarah and the video responses:

Hi Adam!…

I’m going to Borders tonight to look through/buy Breaking the Vicious cycle. I’m also going to ask my new dr. if he knows anything about it. My last dr. told me on several different occasions that it doesn’t matter what you eat (other than if you’re in a flare, foods with seeds etc aren’t good). To me this is crazy, but that’s what he said! I’ve been sort of a picky eater my whole life and only within the last few years have I become less picky, so I’m a little worried about whether or not I could even DO the SCD. I don’t even know what types of foods it allows you to eat, but how do you have dinner with your wife or go out to eat on such a specific diet? Do you feel like it controls your life? I LOVE food, I don’t know what I’m willing to give up. And if you can’t have cheese then there’s no way I can do it. I mean, who doesn’t love cheese?

On another note, you’ve traveled many places. Before you were diagnosed did you travel somewhere and get sick? Because that’s something that happened to me 7 or 8 months before I was diagnosed, and there were also several other people who experienced the same thing that commented on my blog post. I just find this really interesting.

Have you traveled anywhere since you’ve been on the diet? How easy is it to do when you’re not at home (whether it’s just another city or even another country)?

You also say you don’t drink anymore, which I’m struggling with as I’m in my early twenties with friends who like to drink. It’s been easier since I moved from Missoula (my college town). My boyfriend and I RARELY go to the bars here, mostly because we don’t know many people, we hate hangovers and I really shouldn’t drink. But, there’s always those occasions like when we visit Missoula or go to a wedding or whatever and EVERYONE is drinking. (Lately I’ve been saving myself for these few occasions). Sometimes I’m completely fine with going out and not drinking but it’s difficult sometimes to be the only sober person. It’s also hard to explain to people why I don’t want to go out or why I can’t drink. Even people like my sister who was with me in the months I was sick still insist on going out to drink. It’s easy for people to say I should still come and not drink. They’re not the ones that have to be around a bunch of drunk people. What do you do in social situations? How do you handle big events like weddings or halloween (I had 4 beers Saturday) where EVERYONE is drinking (a lot). I’m definitely the kind of person that can have fun sober, most of the time I’d rather NOT drink. But if I’m around people that are drinking, I’d like to as well, ya know? Otherwise I’ll just get annoyed by people’s drunkenness.
I hope these aren’t really random and sorry if it’s sloppy and sounds like I’m rambling. Thanks for all of your help, Adam! It’s nice that there’s someone out there like you to help all of us!
Sarah

***********
Here are the two video responses to Sarah’s questions from me. I am hoping that there are quite a few other types of ideas or answers that others might have which differ completely or are similar to mine. Do me a favor, and please post any ideas below in the comments section if you like.

Thanks so much Sarah for writing in some great questions.  I am just guessing that a whole bunch of others have similar ones right now as well.

I want to sum up in writing some of the answers from the video again for anyone who can’t watch the videos.  Here were your questions:

Q: How do you have dinner on such a specific diet?

A: After you learn the rules of the diet, it becomes much easier than you would maybe think to go out to dinner.  Your eye becomes trained on looking at a menu and knowing right away if any particular plate is something that your diet allows or not.  Also, you become an expert in asking the waiters or restaurant staff if they can make slight modifications to items so they will suit your diet.  I would venture to say that nearly half the time I’m in a restaurant, I have to ask the server to make some small modification to suit my needs, and it is rarely an issue.

Q: Do you feel like is(the SCD diet) controls your life?

A: No.  The diet is an important part of my life, but its not the most important part of me or who I am or what I want to do.  I don’t make decisions on what to do for a weekend based on my diet.  I don’t cancel plans to meet some friends at a certain restaurant because of my diet.  I do however plan out camping trip meals more than I used to.  But I don’t feel like the diet controls me or my wife for that matter.

Q: Did I travel somewhere before I was diagnosed with UC?

A: Yes, I travelled to Prague, Czech Republic and lived there for about one year.  I don’t feel that this travel contributed to me having UC though.  I was dealing with undiagnosed symptoms of UC for several years before going overseas.

Q:  Have you traveled anywhere since being on the SCD diet? How easy is it when you are not at home?

A:  Yes, I have done some simple traveling within the US.  Nothing international though.  Travelling is a little bit more difficult with regards to the diet, but mainly because its too hard to bring your refrigerator.  I am used to having most of the foods I eat at home stocked most of the time(probably the same as for normal non SCD people) When on the road, it just takes more time and effort to hunt out a grocery store and find the things I want to eat.  Going to restaurants while on the road is pretty much the same as back home though.  Although I am away from home, the rules of the diet remain, so I use the same process when ordering from restaurants while away.  My advice would be to bring some snacks with you on the airplane if possible, as it is sometimes difficult to find SCD legit food in airports(and aren’t airports some of the most expensive places to eat nasty food anyways?!)

Q: How do you handle social situations with regards to not drinking anymore?

A: I decided to tell all of my friends and family about my disease and how I am treating it with diet.  I also told everyone that alcohol is not on my new diet menu, so I will not be drinking anymore.  I’ve told them the idea that if I start drinking, I will start bleeding out of my butt once again.  They all seem to have done an excellent job in understanding this.  My own personal urges to have that after work beer, or celebration shot of vodka or tequila still exists, but it is never a strong enough urge to get me to actually do it.  I have realized that it is just not worth it with alcohol for my body.  What has been really interesting to me is that back in my drinking days, I would always seem to be the person who was getting kicked out of the bars when they were closing.  I was the one who was starting the night out with money in my pockets, and ending the night completely flat broke.  But now that I have stopped drinking, I am finding myself actually leaving social events/bars/parties earlier than before while I am still having a great time, and also I obviously don’t have the big alcohol related expenses or worries about how to get home safely etc…




15 Responses to Q&A About My Experiences with the SCD for Colitis

  1. Tony (UK) November 9, 2010 at 5:43 am #

    Thank you Adam,

    As usual I found your video’s very interesting and informative. I am a little concerned as only having relatively recently been diagnosed with UC and Crones and put on a course of Prednisolone, gradually reducing to the point now where I am now, one 5mg tablet per day. I am starting to get really bad symptoms again. They started in the middle of last week when on two tablets per day, the stomach pain, tiredness and pains in my joints, hips and especially the calf of my legs. I thought at the start of the course of tablets, eight 5mg tablets when my symptoms improved, I had this thing beat but now I’m beginning to wonder. I try to be careful what I eat but even then that is a bit of a lottery, one day okay, the next day not. I’m really afraid I will soon be back to square one soon and my Doctor and Consultant will advise surgery, something I want to avoid if at all possible, they hinted at it after I had a Colonoscopy. Perhaps I was being too optimistic thinking you can beat this thing. I’ve got another complication now in that I have developed an ingrown toenail, the hospital won’t give me any antibiotics due to being on Steroids, one thing after the other……….

    • Adam
      Adam November 9, 2010 at 9:09 am #

      Hey Tony,
      I’m super happy you found the videos useful. I’m sorry to hear that you’ve hit a bump in the road during your prednisone tapering. I can remember being really scared to keep on dropping the dose on the steroids when I was coming off them my last time over a year ago.
      I remember being on 2.5 mg/day for about 3 weeks before I finally decided to stop taking them completely.
      As for losing faith in what you are doing, please stay strong. This disease for most of us is a two steps forward, 3 back, 3 forward, 1 back, two forward, one back, etc…. I for sure don’t have even 1% of UC figured out.(I am currently in a mini flare myself right now, and have buckled down on my diet to get out of it ASAP).
      You sound so positive in everything I’ve read from your comments here, and that is the most important thing. Keeping the brain in a somewhat happy place is super important to getting past anything that is medically difficult, and for sure UC fits in that category.
      Best of luck to you,
      Adam

    • Peter NZ November 9, 2010 at 9:15 pm #

      Gidday mate,
      I had the same issue with weening off the Pred. Everytime I got around 10-5mg I started bleeding again. This went on for years and years. The last time I weened down I also stopped eating anything with gluten in it (wheat products) and the blood has yet to return. Definately worth giving it kick in the guts and see how it works for you. It is a bit tricky at first and all diets will be; but no way as bad as having colitis or living on Pred.
      Good luck to you,
      Peter
      P.S. I don’t eat animals either

      • Adam
        Adam November 9, 2010 at 11:23 pm #

        Hey Peter, how long have you been doing the no eat animals for? Is this something since getting UC, or did you do that prior too?

  2. Sunworshipper November 9, 2010 at 7:13 am #

    I find that the SCD is not hard to do at home, at all. It is comforting knowing that I know what is in my meals. It makes me feel good that I’m eating so healthy anyway… no preservatives, honey instead of sugar, the home-made yogurt is much healthier than that you buy in the store (and fresher too). I do miss chocolate (but you can make things with cocoa butter and it tastes like chocolate) and rice. Right now I’m not eating almond flour (yet) so I miss the muffins and breads you make with that, but they are better than regular breads I think. You can have all kinds of cheeses once you get a few weeks into the diet. You can start out with the dry curd cottage cheese right away (now I hate regular cottage cheese, but the DCCC is different and tasty.) But, on the diet, you are pretty much allowed any type of cheese that has been aged at least 30 days and has no added sugars or anything (as long as it’s fresh and not shredded in a bag, and as long as you notice that your body tolerates it)

    I find it a little trickier to eat out. I agree with Adam, avoid Italian restaraunts and don’t eat at Chinese restaraunts. I miss Indian food too, you can’t really eat any of it (rice and potatoes are a no-no, but you can make your own at home and use coliflower instead of rice). But, you can find things to eat, and they are generally willing to talk to you, especially if you tell them you have an allergy instead of just saying you’re on a “special diet”. Just tell them, no milk, gluten, rice or sugar. I usually look at salads too (but be careful that the one’s with nuts don’t have sugary-coated nuts in them) and the cheese must be freshly grated, not from a bag where it has an anti-caking agent in it. You can also make your own salad dressing at home and carry it in your purse in a little jar, or just ask for olive oil and vinegar (plain vinegar, not balsamic or viniagrette as they are illegal on the diet).

    But, you aren’t limited to just salads either. You can have a hearty steak, chicken or fish… any kind of meat, just make sure to ask how it’s prepared. I usually ask of steaks to just have it plain with no seasonings, and put salt and pepper on it myself. Chicken or fish can be baked or broiled in olive oil or butter with fresh herbs. and side dishes of veggies can either be steamed or sauteed in olive oil or butter. For dessert, I usually ask for a fresh fruit plate and it is usually very ripe fruit that people are jealous of. I do miss cakes and pies, but, it’s more healthy anyway. In general, I don’t eat out except for special occassions, but that’s just me.

    As far as social drinking situations go, I never liked beer anyway, but I drank wine. Wine and certain alcohols are legal in moderation on the diet, but many people with UC find that alcohol in general aggravates their symptoms. I personally haven’t had a drink in several months. When I do though, I will have only one or two glasses of dry red wine. But right now, I’m in a flare, so I avoid it. Most people know that I don’t drink because of my UC, I just found it easier to tell them. I used to not tell them, but I felt it made me look awkward and anti-social to just not drink for no reason. So, now that they know there is a reason, they just view me as the DD. It is a little annoying, but not that bad. I look forward to the day when I am in a better state (hopefully remission) and I can tolerate a glass of red wine once in a while. I still go to parties, but I drink water if I feel I need something in my hands.

    Also, when I go places where I know there will be food for others, like parties and such, I usually bring a big bowl/batch of something I can eat that others will enjoy too, like a fresh fruit bowl that I cut up, a cheese platter of cheese I can eat, some almond flour cupcakes or a cake made SCD. That way I am bringing something for the party, but it’s also something I can eat. I also tend to eat before I go, even if people say there will be food for “me to eat” because in general, though people try, they don’t understand the strictness of the diet, so it’s better to just go with a full stomach and if there is something there that you pleasantly find you can eat, then eat it :)

    I also carry SCD legal snacks in my purse when I go out so when others’ get hungry and have to stop at a fast food restaraunt, I have something I can eat. When you get far enough into the diet, you can carry bags of nuts and dried fruit. I usually carry a ripe banana or a larabar. You can also make your own little home made snacks and carry them in a bag. On long trips, just use a cooler and have a boat load of food. Recently, I went to a fair and knew there would be all kinds of food I couldn’t eat, so I bought one of those lunch totes that look like a purse. I packed all kinds of fresh fruit and snacks in it and it held my purse-type things too. So, every time someone bought some food, I had my own little (healthier) snack to eat. They have all different sizes of gladware that you can utilize for all kinds of things. I use little 16 oz. cups for jello, you can also put nut butters in there and eat them with a spoon (good protein and energy) I even fried up some bacon that morning and had left overs in a zip lock bag… mmmmm bacon (there is SCD legal bacon, it’s just cured with salt instead of sugar.

    Those are my thoughts. I hope they help!

    • Adam
      Adam November 9, 2010 at 11:16 pm #

      Hey Sunworshipper, thanks so much for taking the time to share your thoughts on this topic, super helpful of you, and much appreciated!!!!!!!!!!!!!!! You rock!!

      • Sunworshipper November 10, 2010 at 9:56 am #

        No problem :)

        I like being able to help others understand the diet better.

  3. Tony (UK) November 9, 2010 at 3:54 pm #

    Cheers Adam, thank you for your words of encouragement. I must admit I’ve been feeling a little depressed just lately especially today, not my normal state. I’m usually quite positive even when feeling unwell but this UC is a completely new ball game, nothing like anything else I have experienced before. Still chin up, will get through it somehow. Hopefully will feel better tomorrow. Funny you should say ‘Keeping the brain in a somewhat happy place’ because that is something similar to what a Doctor told me last week ‘look after yourself and your body will be better able to look after itself’. The way I see it there are three important elements that go towards well-being, the physical, mental and spiritual and if one of those three elements is out of sync, it upsets the other two. With me I was mental to start with, so there’s no hope really :-)

    • Tony (UK) November 9, 2010 at 3:59 pm #

      Oops – Should have gone under you post Adam.

  4. Catherine
    Catherine November 10, 2010 at 3:28 am #

    I think the most important thing if you are going to try to diet is to do it really seriously for a fixed period – Elaine suggests 30 days, but I’ve seen others such as Jordan and Steve’s scd lifestyle book who suggest 90 days. Go absolutely hard core – stock, chicken, carrots, beef mince, apple and grape juice and eggs for 2 – 5 days, then gradually introduce one thing at a time every couple of days. You can download the intro diet chapter of Jordan and Steve’s book for free. I haven’t bought it, but I understand it has lots of good little mental tips for getting through too. And the theory is 90 days is long enough to be habit forming.

    I love food too. (When I first told my mum about the intro diet and said that Catherine not eating was an oxymoron – I was just a little offended)). I use that love to create delicious treats which taste all the better because they are helping to heal me. There are some fantastic SCD recipe blogs out there.

    I’ve also tapped into my squirral (food hording) instinct, to motivate myself to make tomato sauce and other relishes – there is something really satisfying at looking at a cupboard full of tasty healthy foods that you’ve made yourself. I keep an eye out for fruit or vegetables on special and, if zucchinis are cheap, I make zucchini relish, pears for pear chutney etc. I’ve also just made fruit mince for christmas which is fermenting in the bottom of my cupboard.

    With regard to eating out, I do it less than before. But I use that as an excuse to go to nice restaurants where they make things from scratch, and seen to be more willing to adapt. A couple of places I have done I wanted the duck, but it came with things I couldn’t eat. I just asked eg for them to miss out the potatoes and had the chef come back and say “I can’t do that, the dish won’t fit together without it, but instead I’ll do the duck with caramelised red onions and pear” or the other time with a salad a devine herb dressing. A really handy thing is this restaurant list (http://www.austinscdfriends.com/articles/article/3691416/94645.htm) and I’ve had lots of chefs send their thanks for having a printed list of what I can and can’t eat. I’ve copied it and modified it a bit to suit what I am and am not eating.

    I also take almond meal crackers with me if I know that we are likely to stay for dessert and I can have a cheese plate or fresh fruit plate.

    I’d agree with Adam that the diet is a big part of my life but it doesn’t control it. I’m inclined to invite friends around for coffee instead of going out and then I bake something fantastic (like these: http://milkforthemorningcake.blogspot.com/2008/07/low-salicylate-scd-birthday-and-lemon.html) and next time they don’t want to go out for coffee :)

    And I’d take my diet controlling my life over the D and B and pain and weight loss and hospitalisations controlling my life.

    I still drink a bit. SCD doesn’t encourage it but it isn’t ‘illegal’. Dry wine (I love shiraz anyway), vodka, whiskey and a couple of others are okay. And I really rate the telling everyone what is going on – many people are too polite to ask, but would like to know that you are okay and how to help.

    Oh, and recruit in friends to cook with you. Much more fun that way :)

    (PS. I just have to say thanks again for the great site, Adam. I hadn’t realised how cathartic it was to read other peoples stories and put my own thoughts out there. It’s motivated me to start my own blog about my experiences with colitis and SCD, recipes and whatever else: http://23daysandcounting.blogspot.com/)

    • Steven Wright November 10, 2010 at 11:38 am #

      Thanks Catherine! There is some research that suggests when changing large habits, like drinking, smoking or diet. 30 days is not anywhere near close enough for the average person. For major lifestyle changes most people need 70-100 days, that is why Jordan and I recommend giving the diet 90 days to really see how you are healing and hopefully you will have enough familiarity with the SCD by then that it will be more habit than problem.

      Awesome Blog by the way and Welcome to the community! I’m really happy that you decided to start sharing your story!

  5. Mariela November 10, 2010 at 6:55 am #

    Hi! I am really thankful for this kind of websites. I am from Honduras and its hard to meet someone here with my condition. its a bit hard for me since I can’t even find my medicines here (Pentasa) and the SCD diet is hard to do it since a lot of tje ingredients they don’t exist here. That’s one of the reasons I want to move to Canada or Europe, I think ill have a healthier diet in a developed country ( as crazy as it may sound hehe) and other reasons too, but that’s like one of the benefits ill get out of it. But sometimes I am too scared to just move and I think what if I can’t make it one day to the bathroom, in those places ill be traveling by subway that would be very embarassing :( here I have a car so I just get on it and come home fast. I hate being scared for that I don’t think its fair, I am still young and want to live a bit, I don’t want that to stop me, I’ve always wanted to go and live to another country since I was 17, now I am 27 and was diagnosed 3 yrs ago. Do you have any advice for me??
    Thanks for reading. :)

  6. Steven Wright November 10, 2010 at 11:33 am #

    Adam – Man great post! Love the video format plus the text. I just wanted to add my 2 cents on how the diet interweaves with my life. It is apart of me but does not define me, like Adam and others said it doesn’t hold me back from anything and at the most just requires some extra planning or creativity.

    I like to see it as positive challenge not as a burden. If anything the SCD has enriched my life much more than I could ever have imagined. My friends love my cooking and many times would rather come eat my food than go out. When I first started the diet I saw cooking as a necessary evil now I view it more as a blessing that I actually have this sweet skill that 95% of people under 30 don’t have.

  7. Sofia November 15, 2010 at 6:33 pm #

    Hi Adam,
    I wonder if you or anyone reading this have experienced acute joint pains even after the flare ups…
    My son was diagnosed 3 weeks ago, he is 16. So, we are extremely new at this and are still learning and reading as much as we can. After 3 weeks with bloody stools, he’s now had no blood for several days.
    The hard part is the joint pains. They moved from knee to right foot, to left ankle to left wrist to right big toe…etc. He was in crutches for 2 days due to the foot pain(so he could move around in schoole), and about every 5 days the pain wakes him up at night.. Because of that, the hjreuhmatologist (sp?) prescribed prednisone. but because the GI said his UC is mild, and by the time we had an appointment with him he was walking fine agian… we hesitated to start the prednisone. Last two nights again, acute pain in left wrist, can not move it. He’s been taking Lialda for 3 weeks now. So, doctors said no ibuprofen, so our options seem to be tough-it up thru teh pain, or take prednison for 1 month. We’ve been giving him glutamine, chamomile tea, vitamins, etc.
    Not to bore you anymore…question is: Have you or anyone reading this experienced joint pain, EVEN after the flare up seems to be gone??? that the puzzling part for me.
    thanks,
    Sofia (son with UC)

    • Adam
      Adam November 15, 2010 at 9:13 pm #

      Hey Sophia, thanks so much for the comment/questions.
      I have most definitely experieinced the joint pains AFTER the flare up of the more intestine/colon related symptoms. Also, I know quite a few with the exact same experiences both before and after the flares.
      I wrote a post on this way back in the early days of the website about joint pains and colitis you can take a look at.
      I know exactly what he is going through, I think my wife started thinking I was hallucinating as sometimes I would feel the pains one hour and they would literally be gone the next. No joke.
      I always had/have them in my shoulder,lower back, and elbows. Have never seemed to have any in my legs, but I do recall sporadic pains on one hip. Please let me know if this helps you and your young son out at all. ALSO, make sure to tell your son that he is tough as hell, I was only able to get by after popping quite a few vicodin on days when the pain was nasty! :)

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