Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

Any Encouragment For A Busy Girl Starting SCD?

Kiley from SeattleIntroduction:

I am a 27 year old girl originally from the Seattle area, currently living in Washington, DC. I work in politics, which I love and lead a very active life. I was diagnosed with colitis 6 years ago.

My Symptoms:

Although I am in constant pain I try to not let this disease become my life. I have diarrhea 5+ times a day, bloating, arthritis, joint swelling, lack of energy, sores in my mouth which limit my speaking abilities (I learned recently UC can effect the whole GI tract) and have been in and out of hospitals.

My Story:

I somehow tend to not let this disease get me down but it’s becoming harder and harder. My breaking point was last weekend at an out of town for a wedding – the entire time I was trying to find a ‘safe’ bathroom to use where nobody will bother me, hear me or come in right after. I just can’t keep living this way!

My GI doctor has recommended I remove my colon as my body continues to reject all medicines. Before taking that drastic step I would like to try to the Specific Carbohydrate Diet, I figure I have nothing to lose and I continue to read how successful it’s been for so many people.

Kiley with wine

My biggest hang up is that I have an extremely busy social life and a very and on-the-go job, usually working 12-15 hours a day and happy hours most nights. I rarely eat at home or on any sort of a schedule, I can’t even tell you the last time I went to a grocery store. Having to limit myself to certain foods is overwhelming to me; I don’t know how to find the discipline, especially with being with the schedule I keep. It sounds simple to outsiders (mainly my family) but attempting to change my life in such a significant way is frightening especially since I’m doing it on my own. I just know I have no other option and need to get with the program.

I am wondering if there is anyone out there like me with an active social/work life who decided to take the steps and successfully went on the Specific Carbohydrate Diet? I guess I am looking for motivation and any tips you have on how to manage. I wish there was a ‘weight watchers’ like meeting for SCD! I am feeling pretty alone in all of this.

Thanks for reading,

Kiley

Where I’d like to be in a year:

With a colon but not thinking about it all of the time!!!

Colitis Medications I’ve tried:

I have tried almost all of the UC medicines – Asacol, Canasa, Rowassa, Proctofoam, Lialda, Remicade. I am currently on Humira which is not working so am also taking 40mg’s of Prednisone and 50 mg’s of Mercaptopurine … which apparently is a drug used to treat cancer patients – scary! Sadly the only thing working is the Prednisone – it has terrible side effects such as weight gain and moon face but it’s worth it not to severe UC symptoms.

kayaking on the water

written by Kiley

submitted in the colitis venting area




Washington DC

11 Responses to Any Encouragment For A Busy Girl Starting SCD?

  1. Adam
    Adam August 4, 2012 at 12:32 pm #

    Hi Kiley,

    Thanks so much for sharing your story with everyone. And, way to go for giving the SCD diet a try. That’s what I use, and it’s been great.

    A couple of things to know about using the SCD diet though. First one is that everyone is a bit different. By this I mean, exactly what people can and can’t tolerate, and on top of this, our bodies are changing all the time inside, so one particular thing now might be OK, but that may change in the future. But don’t worry, the same is true for medications and most other things in life. (I used to like Jack Daniels when I was in my early twenties, then I hated it and went to Vodka in my late 20’s…)

    I think a major part of beginning the diet has to do with understanding what your “scientific” goal is. And for most people using the SCD diet, that goal is to make some fundamental changes to the life within your colon. By that, I’m mainly talking about your gut bacteria. If you did some reading or learning about the gut bacteria, and what affects it, the whole process will probably be much easier to digest…

    As part of a goal to learn more about gut bacteria, I conducted a pretty cool interview with a leader in gut microbiology from Stanford University almost two years ago, and there’s tons of stuff you could learn from the videos. Here is the first of the six Gut Bacteria Videos: http://www.ihaveuc.com/gut-bacteria-part-1/

    On a separate note, I went cold turkey on alcohol when I started SCD, and I think it was very beneficial to my healing. Same goes for bread, and all refined sugars. Hard to do yes, but for everyone who does, it seems to be one of the keys to success. It is just not worth trying to sneak in a few beers or sandwiches with bread, as much as it might be tempting. Carbs are crazy like that. They smell good, taste good, but they wreaked havoc on my gut bacteria so I had to wack them.

    Best of luck to you, and thanks again for sharing.

    -Adam

  2. KK-SCDer August 4, 2012 at 1:42 pm #

    Hi Kiley,

    I’m very sorry to hear about your situation. However, you should know that you are not alone; I’m 23, live just outside DC, have UC, and I have just started SCD as well. I know it’s a tough diet, and I’m not convinced yet that it works for me, but I’ve promised myself to give it a year or so. I don’t live the type of social life you describe. I have a 9-5 desk job with minimal contact with people, but I am nevertheless finding it difficult to focus on my work when I am in constant pain. It’s especially difficult to stay on this diet when I’m not feeling too well and I’m at an event with lots of free food, so I too am looking for motivation to continue with this diet. I know it would help me a lot to be able to talk to someone who knows what I’m going through. If you are interested in getting together to try to motivate each other, feel free to shoot me an email (kalmanky2k at yahoo dot com). As for making food, what works for me is going to the store, buying like 10 pounds of ground meat, making patties, and sticking it in the broiler for 10 minutes per side. That gets me through the week and is pretty easy to make and tastes pretty good as well.
    Best wishes and good luck!

  3. Pål August 4, 2012 at 1:44 pm #

    Hi. Just make shure to take some time of in the beginning. the first months can be a trial. But it’s important to have plenty of time couse u gonna need it. U gotto tell friends and work that couse of health reasons, u need to do this diet cause ur digestive system is very sensitive. It takes time to learn how to cook things from scratch, but it goes faster each time when u learn what to shop and how to make it. Start the intro diet and gradually expand depending on how ur feeling. Don’t do the intro diet chickensoup thing more than one week cause ur system dosent need it. Spend time on web reading about the diet first, then start reading generally bout food and what the shit we eat mess up ur system.
    Good thing is to always have snack, if u feel that u take it well u can have bananas and nuts with u all the time. That way it’s easier to kill the cravings

    After some time, u will feel how much easier ur body brakes scd legal food down. It means ur stomach will ease down. U will feel less bloating, cramps. And u will feel quicker and more awake at work and at home.

    Ur colon will stop getting so angry and after a while, depending on how the situation is down there.
    I drank that nasty stuff to empty my colon first day, that may help. Also for me it helped, and sometimes helps with suppositories and enemas cause its always to clear worst innflamation with, and most of them are harmless.

    I work alot, After 6 months i started go out and party again :)

  4. joanna August 4, 2012 at 2:19 pm #

    hey girl. i have also thought about trying SCD. i am going to see a surgeon in a month and am so scared for that. if i could get my disease into remission with diet, that would be a dream. i can’t wait to see how this goes for you.

  5. Steve August 4, 2012 at 2:40 pm #

    If you want to do it, I say you can. It will be a little different and you might have to plan ahead but that is not as difficult as it sounds as lots of SCD legal foods can be made in minutes with a little thinking ahead. Lots of them can be frozen in individual meals too. If you have an active social life while sick, it will only get better if you can get things under control—you won’t be worried about the bathroom and I can’t tell you how awesome that feels.

    Myself…I just started SCD today. Well, I’ll be eating all legal foods starting tomorrow. I couldn’t wait around 4 hours smelling that awesome chicken soup and not eat SOMETHING. My yogurt smells quite good too so I hope it turns out. As others have hinted at, you may find certain foods that you may have to avoid at first…but you can come back in time. Refined sugars and processed grains are big ones. Just give it a shot. You might be really shocked by what you find. If you have any questions feel free to ask. Steve

  6. Efim August 6, 2012 at 8:35 am #

    Hi Kiley!
    Giving the SCD a chance before heading to surgery sounds like a great option! Iv’e tried all medications possible including Prednisone and 6MP. nothing worked and my doctor suggested Humira. I was lucky enough to do some research about it before I agreed. I am now on the SCD for two months and overall I am feeling better. symptoms are present here and there but they are less active. I am also taking 11mg of Prednisone which I am lowering every week. Although the diet is hard to maintain, it gives me inspiration for a better future. Good Luck!

  7. Geof August 7, 2012 at 2:52 pm #

    I can’t even begin to understand how you and everyone else with this rotten mess of a disease can maintain such active life styles… I had to scale way back after my diagnosis… due to pain urgency and side effects of meds, As I am I barely leave the house… if only to go to the doctors offices or basic necessities… any recommendations for getting through the day?

    • Steve August 7, 2012 at 7:02 pm #

      Hey Geof…I use to be a lot like you when I was really sick. I was confined to my house and very rarely tried anything “new”. I had a routine and stuck to it…even simple things like going to the bank, store, etc…became adventures I would avoid if I was feeling too bad. Then I made a point to exercise lightly each day…I have a pit bull so taking him for a walk was what I started with. That actually seemed to help symptoms mellow out some, then diet also plays a role. The SCD can help, as well as the raw diet…in comparison SCD is much like eating normally, although people who go head first into it may find it strict. Coming from the raw diet, I find the SCD ways so easy. There are so many options. I’m feeling a little overwhelmed as I just started, but learning is part of the process. Mind you I was not taking any medications so it also depends on what you are doing there? If you want any tips, feel free to ask me specific questions…whether it be about diet, or anything else you can think of. I’d be happy to help because I remember all too well feeling trapped in my own body. It feels even more weird when people look at you and see a perfectly normal looking person so they just think you are an anti-social weirdo. :) We are all far from that. Steve

  8. Jeff August 8, 2012 at 9:44 am #

    I would take it a step further and do the GAPs diet. It takes SCD to the next level and eliminates more foods (dairy, all grains, all starches) until you are ready to try re-introducing them to see their affects on your digestive tract. I have UC and was having a terrible flare-up a month ago to the point that my GI doc wanted me to have surgery. I immediately cut out all gluten for three weeks and slowly got into the GAPs intro diet. The animal fats, fermented foods, and other traditional cooking methods in GAPs all work to heal the intestinal lining and promote proper bacterial balance in the gut. Do this along with probiotics (I use VSL3 and Mutaflor), cod liver oil, and 5000 IU of vit. D daily and you should see major improvement. I’m down to 1 to 2 trips to the bathroom a day, down from 10+ a month ago and feeling great. It takes a lot of work and can be expensive b/c you need to buy all organic produce and grassfed meat, but your health should come before all else.

  9. Brenda August 9, 2012 at 10:53 am #

    My husband Barney was on scd . 6 months At the time he was on the enemas, predisone, 40mg sometimes 60mg a day, some pill that started with melosone , all the typical meds. none of the meds did any good. the scd lifestyle did help even after 3 or 4 wks. on it . But, he could not eat and progress to eating meatloaf, beans, the normal stuff you get on scd (after) the first 2 or 3 days, you start adding things in . But, he was too sick. spent one and half yrs in hospital 4 bl tranfusions, TILL REMICAIDE, thats what helped him. he had lost 50 lbs , (he is 6″2″) and now he gained it all back. and is doing very well. he has been on it one yr or so. But, lately I heard sometimes the remicade stops working. I have been thinking he could go back on scd and just see. that way, if the remicade gives out., I could have a back up plan.

  10. Sam August 13, 2012 at 5:43 pm #

    Hey Kiely, i hear you chick! I’m 28, in NZ, was diagnosed in 2007- i don’t like letting UC “beat” me either. I’m currently taking worm therapy as it worked for my brother (who was on list to have colon removed) never looked back, worm are the only answer we’ve found. I love my life and am active and outdoors as much as i can,
    I’m reluctant to take drugs and feel NO HELP at all from doctors :( it sux.
    maybe you should try worm therapy, check it out A.I.T on the web

Leave a Reply