What’s Up UC’ers (Colitis People),
For everyone who is new to the website, the facebook group, or our Colitis Newsletter, my name is Adam and I started this website almost two years ago. I also have ulcerative colitis(which I’m guessing you already guessed if you like guessing.)
I received an email from one of you a few weeks ago, and I now am having a moment to respond to it. The fellow UC’er requested that I post a story about my recovery from colitis symptoms while using the SCD diet. What a great idea he had, and I thought that all of you using the diet like I do might benefit as well.
Here is the email I received:
Im really thankful for your website, its just what i needed. My names J, im 22 and I was only diagnosed with UC 3 weeks ago but have had a flare up goin on for about a month and a half. The doc started me on predisone and asocol, and i dont think the asocol is helping so i slowed it down. One thing i saw a lot of promise in was the SCD diet after reading all these success stories all over your site. My diet was really suffering (lost about 20 lbs in a month). I was constantly uncomfortable after eating and my diarrhea was not getting any better. I figured I’d try the diet! nothing else to lose right? So I have and read Breaking the Vicious Cycle and started the intro diet yesterday. I don’t want to get my hopes up but i already feel much better, so we’ll see. I was wondering if you could make a post(maybe theres one already i haven’t seen) with a detailed explanation of your recovery from your flare up on the SC diet so i can gauge how im doing. Anyways, again your websites great and helping me cope with this shit (no pun intended). I will try and post my story soon!
(Thanks for writing me J, I should have wrote this type of post long ago for you and others wondering the same)
So now back to the story, here we go:
As some of you might recall from previous postings, just two years ago I was going through horrible UC symptoms, and all the medication treatments I had tried had failed to bring my UC into remission(asacol, prednisone, colazal, sulfasalazine, enemas, Humira, and Remicade). I was getting ready to schedule appointments with the surgeons to discuss removing my colon like happened to my uncle 35 years prior. Then for whatever reason, my father introduced me to a family friend who’s daughter also has UC, and she was using a diet to control her symptoms and had been medication free for over 2 years. She also tried all the medicatoins I had tried and also 6MP. The rest is history. I followed the diet she was using and eventually became symptom free as well.
I started the SCD diet when my symptoms were most definitely active. Each and every day for months leading up to August 14, 2008 when I started the diet was more or less the same. Colitis symptoms like:
- Never Formed Stools
- Dark red blood mixed in with the water poop or very semi/loosely formed poops
- complete diarrhea
- often dripping bright red blood as well
- multiple poop runs within an hour period, especially in the morning hours. It was not uncommon for me to be sitting on the pooper for 2 hours each morning
- weight loss due to nothing being absorbed in my system
- overall weakness of my body (I’m sure sitting either on the poop or in bed for so many hours each day was not good either for a 30 year old…)
- mentally and emotionally, of course I was very depressed even though I was trying my hardest to fight through that, but its hard when you see blood everyday in the toilet, all day long
- cramping that would come and go out of nowhere, and when it came, it would force me to sit down or run to the toilet
- Oh, I should mention as I’m sure many can relate, the smell while taking a poop was often much much worse than I remember from the years before being diagnosed with UC. that was always strange to me too.
- Often I would eat something, and then within minutes be walking/skipping/running to the bathroom, almost like clockwork
Well, those are hopefully enough to give most of you fellow UC’ers an idea of what life was like for me. I was diagnosed through colonoscopy with Severe Ulcerative Colitis, so your own symptoms may vary significantly if you are currently in the mild to moderate stages of UC.
Description about my Colitis Symptoms After Starting the SCD Diet:
Now, come August 14, 2009, I started the SCD diet. At the time I was also on one of my many tapering sessions of Prednisone, and with my best guess I was on approximately 15-20 mg/day as I remember. When I started the SCD introductory diet, I was nervous and skeptical, but that soon went away.
Day 2-3 after starting the diet I began to notice my first positive signs of changes taking place in my body. What did I see, well, I started to see semi-formed poops in the bowl that were more formed than anything I had seen in quite some time. That was an awesome sight and reason for celebration as you can imagine.(Especially when each and every GI doctor I had met with over the preceding year had told me diet had nothing to do with anything related to Colitis…) If you have UC, and it’s been a very long time since you produced a formed stool, it’s pretty much the coolest thing you can see in the toilet bowl. Almost something that makes you pinch yourself to make sure you’re not dreaming.
Day 3-4 after starting the diet things were very gradually becoming clear to me that there was a direct relation between my new diet and what was coming out of my poop hole. It wasn’t a one time fluke for sure. I was now finally noticing multiple days of harder poops than I had taken in several years. I can remember that the frequency of poops was starting to go down, and my APPD (Average Poops Per Day) score was decreasing too. So again, the more formed stools, decrease in amount of blood, and poop count going down was all signs of things getting better.
Day 4-10 Many of my symptoms of UC were still present. But I believe that if I was moderate/severe going into the diet, come day 10, I was now most definitely mild/moderate and on a trajectory of continued improvement which is so very important. I had tried to many drugs and treatments up to this point that worked right away for a few days/weeks (like Remicade for example) to get super excited with my early SCD diet progress. But, this time, I was actually believing in what I was doing to treat my UC. So this made things much better to understand why my poop was getting harder and harder, all along while I was slowly tapering off prednisone. At the Day 10 mark, I definitely started to notice my cramping attacks started to disappear, and even go away for entire days. There were most definitely small bumps in the road, or the occasional poop that was much less formed than the previous, but the overall trend was clearly positive. And I was getting excited again to hit up the bathroom to see what would come out.(Can you believe that). When only a few weeks earlier I would pretty much not want to look as it would be depressing.
Day 10-30 With continued improvement, gradual for sure, but improvement none the less, I was at the point where there was no more dark red blood in my stools anymore. This was great. I still had some bright red blood sometimes on the toilet paper(which I’ve learned now was from hemorrhoids which are common for UC people), but no blood mixed in with the stools. This was great. Victory for me for sure. I was down to about 5mg/day of prednisone and looking forward to the day of being completely off all medications and just focusing on diet.
Day 30-60 My symptoms had nearly gone away at this point. After two months on the SCD diet I was at the 1-3 bowel movements per day I would estimate. And I would say that 75% of the time it was a formed stool. 15% of the time a semi-formed/solid stool. And 8% of the time a not so formed stool, and the other 2% of the time something resembling diarrhea. But the bleeding was gone, and I was super happy.
At this time also, I was slowly starting to gain back the weight that I had lost, and slowly starting to gain my strength. I had always been very physically fit before coming down with UC symptoms, and it took me quite some time to get back to where I am today. I’m back at 160 pounds(5 foot 10 inches). Feeling strong, and most importantly getting stronger everyday.
Right now, I am down to about 1.3 for an APPD (Averge poops per day). I’ve gotten to the point where I’m laying skid marks again on the toilet bowl. For
those of you wondering what I mean…well when I was pooping soft, watery non formed poops, they don’t have the ability in my experience to make skid marks on the toilet bowl. Hard poops can do that…(In my experience…) I’m not proud of it, but it’s happening again.
One BOTTOMLINE POINT, my experience with the SCD Diet has been very positive. My improvement from active colitis to remission has not been instant. It has taken me time. In 11 days I will hit my 2 year mark following the diet. Yes, I am medication free, but I still follow my diet rules everyday all day long.
Thank you J for your email, I hope this helps answer some of your questions. And thank you fellow UC’ers for reading. I wish you all the best with living an active healthy life.
For more information on the diet I follow, you can visit the Ulcerative Colitis Diet page.
I started site and the eNewsletter(you can join that below) shortly after being diagnosed with ulcerative colitis in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
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