Sick of this crap (literally!)

Hi there! My name is Angie.

I am 32, happily married and have 3 young children. I suffer from moderate-severe ulcerative colitis. And as if that wasn’t enough, the joint/tendon pain and arthritis I experience at times is insanely intense. (I also get rashes and blisters, as well as terrible mouth sores) I know…it sounds more like Crohn’s but I’ve had all the testing possible and 3 different opinions from 3 different doctors and all say it is in fact, UC. I was originally diagnosed in 2002, the symptoms were off and on but never as severe as this past year and a half. I had my 3rd child a year ago and during my pregnancy I found myself in the hospital several times because of severe joint pain. I am extremely fatigued all the time as well. I’ve decided to take a break (against my doctors’ will) from trying new UC meds and give the SCD a try…I’m still on sulfasalazine and prednisone. I am also currently experiencing a pretty bad flare, which has been ongo ing now for almost 3 months. I’m praying the SCD will help. I am scared to death to try the “big guns” as my doctors call them (remicade, humira, etc.) because my father died young of leukemia and lymphoma and if you are aware of these drugs, you should know that a risk of developing such illnesses exists. I did try imuran for 3 days and instantly developed terrible joint pain and headaches…so I stopped. I am trying to live day by day with my symptoms but it isn’t easy…I just look at my children and remind myself to move on. Adam, thanks for developing this site. I just discovered it today but it has already given me hope!

8 thoughts on “Sick of this crap (literally!)”

  1. Hey Angie,
    I want to wish you the best of luck with trying the SCD diet. I really feel your pain, and especially with the double or tripple wammy that UC can deal(joint pain etc..) as well. I think its hard to explain the joint pain symptoms to anyone unless they have also gone through the feelings that come about.

    Please keep us posted on how your journey goes with the SCD diet. There are several others who follow the site who are on the SCD diet too to treat their ulcerative colitis so you’re most certainly not alone.

    Best of luck with everything. Also, an important point from my personal experience that I like to bring up often is that I was knee deep in a multi year never ending flare that wore me down completely physicall and emotionally/logically/financially etc… and the SCD diet was able to bounce me back to normal again. So, heck yeah, its possible. -Adam

  2. Hi Angie, im a mother of 6. i have been going down hill for many yrs with my health. iv had chronic fatigue for 21 yrs. iv had pain and migrains for 18yrs. iv never been well since i was a small child with going to Drs and hospital (in the mid 70s) and be given morphene for pain. i was diagnosed with varying diseases over the past couple of yrs including sciatica. it started with polyps in the gall bladder then, my adrenal glands stop working i always had heart palpitations and diziness, my Dr put me on 20mg of hydrocortizone for that, i picked up a little, i noticed that my periods got a lot better and gushing stoped. i then started going downhill dramatically again so i started doing my own research again. and found a simple thyriod test to do at home, which is simply to check ur temp bfore geting out of bed in the morning. if ur temp is down u most likely have thyriod trouble. u guessed it mine was rite down and my Dr panicked and put me on thyriod meds,. i started feeling good again and 5 mths later i was soo sick of my daily migrains i let my Dr know more of my history, in which i had had gestational Diabetes. so off i went for a glucose tolerance test and u guessed it i had diabetes. i cured my headaches and my diabetes in 5-6 mths by strictly adhering to low Gi diet. and then this yr started bleeding and swollen stomach and back to my old pain i had morphene for and was diagnosed with UC. im a mess but my Dr has not slept in trying to help me. she has worked out that an alkaline diet will help (she is looking to help with all my ilnesses not only UC) so heres hoping.

  3. Torie,
    I have UC too, and after a year-long massive flare that floored me, I tried the SCD. In a month, things were looking up. Make a 30-90 day commitment, track your symptoms (for encouragement), and don’t cheat. The trouble is worth it.
    I write a blog that may help, and there are others that may help too. If nothing else, check out the links:

    Also, you may want to follow this blog for ideas and encouragement:

  4. Hi Angie! I was first diagnosed with UC 22 years ago. I’ve been lucky enough to stay in remission for long periods of time, and my pregnancies did not cause flares. At my worst, I was fainting from pain and urgency. I woke up one morning and couldn’t even stand- I had these huge, hot, painful swollen lumps where my knees should have been. I’ve done prednisone, too, and decided not to ever try that again. I started the SCD three weeks ago because I was experiencing that familiar joint pain and making more trips to the bathroom. I wanted to stop it in it’s tracks, and it has! I already feel better! I also have three young children, and I know this diet is a lot of work, but it is so worth it. I can’t be the kind of mother I need to be if I’m flaring at my worst now. They need me here, and they need me healthy. I tell myself that I’m doing it for them. After all, the huge number of veggies and fruits in the house won’t hurt them either! :) Your children will only be happier when you feel better! Best of luck to you!

    1. Hey Kristin,
      Thanks for posting on the site, and also, SUPER BIG CONGRATS for stopping the joint pain. You have figured out something that nearly every Rhuematologist wishes they knew how to do. I deal with the familiar joint pains too, and was wondering if had any ideas on what you think might be causing this within your previous diet? I think you are the first person who has talked about successfully ending the joint stuff(WHICH IS GREAT, and I apologize if I have forgotten others with the same success).
      Quick question too, do you drink coffee with milk or cream? Reason being, thats my daily slip up from the SCD plan, and I am wondering if there is any joint connection?

      1. Hi Adam!
        No, I taught myself to drink black coffee- it took a while, but it worked ;) I was one of those people who drank a big cup of cream with a touch of coffee, though. I was gluten-free for a long time, so I can’t blame the joint pains on gluten. I thought it was probably starch-related, but it’s possible it was the dairy all along. I drank at least 2-3 cups of coffee with cream a day before I started the SCD. Now that I’m drinking it black, I can’t bring myself to want more than one! Might be worth a try :)

        1. You’re giving me hope, don’t hold me to it, but I’m going to try going creamless. and you’ll be the first to know if it turns the trick. the joint pains have left for the past week or so on their own, but surely creamless will help for a longterm solution(hopefully)

  5. Hate to tell you Adam & Kristen I have been drinking my coffee black before UC and I still get joint pains/ swelling and I am on Remicade and Pentasa. Sorry.but you never know, maybe cutting out cream/ milk will shock your system and your joint pain will disappear! I will tell you one thing, I was having all my java’s half decaf and lately started back to full caffeine( you just triggered my thoughts on what I have changed recently!!!) I have had joint pain and now quite fatigued, achy, I believe mouth sores…maybe it’s the caffeine! I have heard by nutritionists to cut out caffeine altogether, but I do enjoy it too much :) but I guess if it’s making me feel like this, decaf will be my best friend! Keep me posted on any changes…I love this blog, thx Adam!

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