My name is Erin and I live in New England. I was diagnosed with UC in early November, 2013. Hoping to manage the UC using the Specific Carbohydrate Diet!
Some more about me:
I’m married with three kids. If I could be doing anything in the world right now, I’d be reading a good book on the beach!
Symptoms:
My symptoms at the time of my diagnosis were bleeding, mucus, urgency/frequency, plus fatigue and joint pain. Right now, I’m not showing much for symptoms…feeling pretty lucky about that!
Looking to Control the UC with the Specific Carbohydrate Diet
My symptoms started about two months ago – Sept 2013. I initially thought the bleeding was due to an internal hemorrhoid and my GP thought so too. But I did get referred to a GI doctor, as the bleeding had been going for a month, and I’d never had an issue related to a hemorrhoid go on for so long.
So, off to the GI doctor for a colonoscopy! By this time, I’d been doing some research on my symptoms and figured they were looking for UC. Colonoscopy confirmed it; the doctor called it mild/moderate, as apparently he saw the signs at both the beginning and the end of my colon. Because I’d been having some serious joint pains and fatigue, it was almost a relief to know that these were related to UC…I was kind of afraid that I was developing arthritis or another disease impacting the joints.
Because I had been reading up on UC (including this very informative site!!) I had a rough idea of the medication options and the impression that controlling one’s diet could do a lot to control the disease. Yet most of the mentions to the Specific Carbohydrate Diet that I saw online were not on major sites (CCFA, Mayo Clinic, etc) but rather sites such as this, and I have to admit, I was skeptical. It kind of sounded like a fringe-y, fad thing: no whole grains, bananas must have brown spots to be ‘legal’, and a lot of recipies that seemed to use a whole stick of butter.
When I told the doctor that I wanted to control it with diet, he seemed surprised but told me to get ‘Breaking the Vicious Cycle
He gave me a 30 day Rx for Canasa as well. I am not anti-medicine by any means but I do believe that meds intended to treat one thing can have side effects requiring either more meds or causing ill effects in a different form. (The Canasa was $130 for a 30 day supply!!)
Started the SCD, and I’m amazed at how it’s worked. Not that I don’t think that diet is a contributing factor to health, I’m just surprised that the symptoms are mostly gone without meds. I say mostly, because I’ve cheated a couple of times (and learned my lesson the hard way) and also because I am pretty new to this.
The doctor cautioned that it was important to keep ‘flares’ in check to limit the spread of UC. Any tips on at which point a flare is getting out of control, and I should call the doctor, or see about starting meds? Or will it be self-evident? :)
Medications & Supplements / Vitamins:
- Canasa as needed
- started taking a probiotic
- calcium + Vitamin D
- glucosamine
- and a multivitamin.
written by Erin D
submitted in the colitis venting area
My name is Erin and I live in New England. I was diagnosed with colitis in early November, 2013. Hoping to manage the UC using the SCD Diet!
YEAH ERIN!!!
Super happy that you’re feeling better and seeing results from SCD diet eating!
Friggin makes my day to hear people like you going down this road.
As for when to call the doc, when are flares happening…
GREAT question. And, there’s no 100% correct answer. If you ask 10 GI docs that question…you’ll get 10 different answers.
But, here something to think about…
If you like your GI doctor, and you trust him/her (which is sounds like is the case, and thats great!) I’d suggest that you call when you are feeling uncomfortable with your symptoms. Just as long as you’re not waiting until you’re passed out in the bathroom. Overt time you’ll become better and better at learning what out of the blue (or all of a sudden changes) you’re comfortable with “handling” on your own.
I remember having almost daily phone calls with my GI’s office right after I was diagnosed. I had that one on auto-dial on the phone for sure. But…as time moved forward, symptoms improved which was sweet, but also, when a bump in the road comes up, or a poop just ain’t like the others, or whatever…I don’t make phone calls anymore and 99% of the time, the next day things are back to normal.
I guess what I’m trying to say is…if you want to make the call, go for it. It’s all up to you. You’re the patient. No shame in calling anyone.
Best to you, and best of luck with some continued success in 2014!
– Adam
Thanks for the vote of confidence, Adam!
By way of follow-up…after I submitted this post, I met with Barbara Olendzki, a nutritionist at UMASS Worcester, who has worked with the IBD-AID diet. She had a ton of great advice for me and was very encouraging.
They did a limited study of the diet’s effects on people with UC and Crohn’s – see it here: http://escholarship.umassmed.edu/cgi/viewcontent.cgi?article=1025&context=cts_retreat
Plus they have some great recipes: http://www.umassmed.edu/Content.aspx?id=148562
Way cool Erin,
thx for sharing the link here!!
Hooray, Erin! So glad that things are going well for you. I was diagnosed in 1/2012, and started a strict Paleo diet while I was on prednisone. Things cleared up and I definitely got better, and was thrilled when things held up once I weaned off the prednisone. Diet, for many folks, is a great way to control UC. Mine has morphed more towards SCD/GAPS but I am sticking with it – I have a follow up colonoscopy on 1/2 to check my healing. Looking forward to some good news!
As for your questions about when to call a doctor/get back on meds, I am with Adam – there are a million different benchmarks. The other thing is that progress with UC isn’t always linear – a rough day doesn’t necessarily mean a flare is imminent. You will likely have good days and bad days. But both my GI specialist and his PA told me that the line in the sand that they have is that if you pass gas and are not sure what exactly is going to come out, to call them immediately. Very graphic, but also very easy to follow. :)
Happy New Year!
Caroline – I like your GP’s ‘line in the sand’ – that’s a pretty easy rule to follow!!! :)
Hope you had a good (????) colonoscopy today…what a way to kick off the year!
Hi Erin,
Glad to hear you like it! :) Thanks for asking about the colonoscopy – the good news is that I got great results – last one I had severe pancolitis, and this one only showed mild/moderate inflammation in the rectum. Hooray! Just goes to show that this stuff works. :)
The downside is that I have had trapped gas pains and now am spiking a fever – I’m sure it’s just due to the anesthesia since the pain has greatly improved (happened last time too) but if it gets over 101 we’ll be headed for the ER. Which I am definitely not interested in since they’ll probably give me IV antibiotics, but now it’s at 100.6. No one better kill my tender garden of flora! Wish me luck!
Hi Erin,
It seems that you are really on top of your health here. Spectacular that you have it under control with diet. I am curious about the diet suggested at UMass, it sounds like there may be some alterations to SCD? Do you know if there is a list of foods that are allowed or not allowed? Or maybe I can just contact them? It looks as though they had some pretty impressive results. I would like to comment on the flares, I have learned over the years that the quicker I respond the quicker I can get a flare under control. I have had good luck with the Rowasa enemas but of course they don’t work for others. I’m now focusing on diet and am hopeful to get results with that instead of medication. I’m currently in remission so it seems a good time experiment.
Donna
Hi Donna,
While the nutritionist gave me some handouts, I don’t see anything on the web site for easy sharing…perhaps send her an email? Her email address is all over the site.
My takeaway regarding the IBD-AID diet vs the SCD, is that nutritionists have been able to build on the original SCD. Barbara explained that the food supply is much better today (surprised me!) and nutritional analyses can be performed that just weren’t possible in the 1970s. So certain foods may be permissible under IBD-AID that are not permissible with SCD, and may have beneficial properties…but of course, it all comes down to the individual’s tolerance.
Thank you!
Hi Erin,
I was unable to contact Barbara Olendzki, probably computer user error! Can you tell me how you’ve been doing on the IBD AID diet? It looks as though it may include oatmeal, are you eating oatmeal? And dark chocolate? Are you eating that too? If so do you try to find one with the least amount off sugar? It sounds as though UMass plans to release information in the near future but it is currently unavailable. I’m currently eating SCD and strangely I’ve had a few episodes where I feel distressed during digestion just after eating. I’m wondering if a little oatmeal might not be just the thing. Thanks for your help with this.
Donna