One year on SCD — still going strong

Introduction:

I am a 24 year old graduate student. I spend my days working on my Ph.D thesis, watching tv with my lovely fiancee, and preparing SCD-legal food.

Some more about me:

I don’t really have any hobbies. I don’t have spare time as I spend my days doing physics research and buying and cooking and eating SCD legal food.

Symptoms:

Tenesmus
2-3 BMs/day, mostly formed
Occasional blood, but none after the first wipe.

One Year on SCD

May 15, 2013 was a special day for me, as it marked my one year anniversary on SCD. I wanted to take this opportunity to write down how I felt before I started SCD, how I feel now, and what I hope will happen for the future.

Let me first go back to my diagnosis. I was diagnosed in 2005 with Ulcerative Proctosigmoditis after several sigmoidoscopies and a colonoscopy. My symptoms began when I was 1 or 2, as my parents tell me that I was having far too many bowel movements a day even before I was potty trained, and after I got potty trained they knew where every single bathroom in every single shopping store was. Things settled down for a bit as I was growing up — I never knew something was wrong with me. Around when I turned 12 or 13 I noticed some blood after wiping. I thought that maybe I had cut myself or something, and I thought nothing of it. A long time went by. I don’t remember how, but my parents found out about this. Maybe I told them, or maybe I forgot to flush once, but they found out and freaked out. They scheduled an appointment with a GI, and we went through the litany of blood tests and various -scopies that are all too familiar to an IBD patient. I was fortunate in that my GI diagnosed me relatively quickly — I know a lot of people go years without a diagnosis. So, in 2005 I was told I had Ulcerative Colitis.

The day I was told this, I distinctly remember my mom asking the doctor if there were any foods that I should avoid. I remember the doctor shaking his head, saying that no, there was no evidence that food had an effect. I also distinctly remember not caring. My only symptom at the time was a teeny stripe of blood on the toilet paper. I didn’t really care. So what? It didn’t affect my life at all. My doctor put me on Asacol, and I went on my way. I don’t remember if the Asacol helped or not. I do remember that for the next 2 years Ulcerative Colitis played absolutely no role in my life. It didn’t affect me at all, as all I had was still this tiny stripe of blood on the toilet paper. I was having 2 bowel movements a day, one in the morning, and one at night, and I simply didn’t care. I didn’t even bother taking my Asacol most of the time (I later switched to Lialda, which was cheaper). During follow up visits with my GI, that I was told that ” many people with colitis lead completely normal lives”. I remember thinking — how is it possible to NOT lead a normal life with colitis. What the heck is so difficult about it? I thought this until 2007.

I started college in 2007. My daily schedule totally changed. My diet totally changed. My living conditions totally changed. Everything totally changed including my bowel function. I started having 3-4 bowel movements a day. Frequently, I would go before I was ready, knowing that I had an hour long class coming up, and not knowing if I could make it through the class. I would go if I thought there would be no bathroom available. My symptoms started to worsen. Every morning I would wake up with horrible stomach pain that would only go away after I went to the bathroom. My morning bowel movements were formed, but all subsequent ones were a toss up. I had to go every single night last thing before going to bed. If I went even 30 minutes prior to going to bed I would get so stressed out that I would get gassy and have to go again. This was the first time I realized what ulcerative colitis really was.

By my junior year of college I was having 4-5 bowel movements a day. I was constantly in a state of ‘having to go’ — in other words, I never once had an accident, but I always felt pressure like I had to use the bathroom. My days were spent ‘holding it in’. I saw my GI that year and said that things were getting worse, was there anything else that we could do? He suggested 6-MP. He listed a lot of the side effects, but said it was a much stronger drug and I’d feel a lot better. I agreed. Fortunately, my parents disagreed. They were afraid to try 6-MP precisely because of the side effects. At the time, I was really angry at them because I thought that they didn’t realize how bad I was feeling. I felt like they thought I could just ignore it and it would go away. But nevertheless I agreed to not use 6-MP. I just started taking my Lialda more religiously, never skipping a day.

I graduate magna cum laude with a degree in physics, despite being terribly sick. It was difficult for me to make friends in college for all of the usual reasons — anxiety of social situations, lack of bathrooms, not feeling well, etc. I was able to get straight A’s (only 1 B all 4 years) and get into graduate school. During my second semester of graduate school, things got really bad. I was having 5-6 bowel movements a day, which doesn’t seem like a lot to an IBD patient, but the fact is that the rest of the time was spent in a persistent state of ‘holding it in’. I couldn’t function. I never felt relief after going to a bathroom. Stuff would come out that wasn’t quite diarrhea, but wasn’t quite formed either, and I ALWAYS left the bathroom having to go more than when I went in. I was under lots of stress, for many reasons, and I was really scared. This was the first time I became proactive about my disease.

I first discovered SCD some time in the Fall of 2011 on the iHaveUC website. Adam’s videos of himself treating his colitis with the SCD stirred some hope in me. But then I looked into what it entailed. Giving up bread? Rice? Sugar? Homemade yogurt? I could barely cook pasta and they were telling me about making my own yogurt. Why the heck couldn’t I just buy some at the store? I thought SCD was an interesting idea, but I didn’t get around to trying it.

In the spring of 2012 I hit rock bottom. Lying on my parents couch, after the umpteenth time of going to the bathroom and my stomach pain not going away, I called my girlfriend, with whom I was living at the time. I broke down and told her that I just couldn’t do this anymore. I couldn’t live like this. I wanted to try SCD. I begged her to make me some of the 24 hour homemade yogurt according to the instructions that I sent her from the website. I would be at my parents house for the weekend, but I would be back Sunday night, and could she make me some of the yogurt? My wonderful, amazing girlfriend, who is now my fiancee, spent the next day buying the equipment — a thermometer, the proper yogurt starter, which I later learned is only available in 1 store in a 30 mile radius of our apartment, and a heating pad. We did not have a yogurt maker. The only heating pad she could find turned itself off after 2 hours, so the poor girl spent the entire night waking up every 2 hours to turn it back on. I was grateful beyond words. When I got back, we made some chicken soup, and I went on the intro diet on May 15, 2012.

At the same time, I ordered the book, Breaking the Vicious Cycle: Intestinal Health Through Diet, which describes SCD. I read it cover to cover in one day. It made so much sense to me. Perfect sense. I won’t go into the details here. They can be found all over the internet. I understood immediately that SCD had to work. The science made sense. For the first time in 4 years, I had hope for a better future.

I think its definitely a sign that you have hit rock bottom when you commit to a diet like SCD 100%, no cheating, and are able to follow through. My first year has been difficult beyond anything I could have imagined. Not restraining myself from eating SCD illegal food — I have never been tempted. The difficult part for me has been making sure that I have SCD legal food available a few days in advance, and the awkwardness of abstaining from eating at social events. I have not had craving for illegals all year.

What has 1 year on SCD been like? Within 30 days the morning pain was gone. I say that because in my food diary, on day 45, I have written in that I had pain in the morning, as if this was unusual for me. I simply did not have stomach pains in the morning, unless I ate something that was too advanced for me. I was having between 4-6 bowel movements a day, and my weight was dropping fast. I was not eating enough. But the fact that my stomach pain had disappeared was enough motivation for me to continue. I started to go to the bathroom less frequently. My first bowel movement of the day often came in the afternoon, between 2 and 5pm, even though I woke up for work at 7 or 8 every day. After a few months I figured out how to eat enough during the day so that my weight stabilized. I went from 180 lbs to 155 lbs, but it was ok, because I was feeling better. I was having 2-3 bowel movements a day. To be sure, I was still perpetually in a state of ‘holding it in’. My trips to the bathroom were not great. I fluctuated between formed stools and diarrhea, between feeling better after going to the bathroom and not feeling better. I suffered from horrible tenesmus that began right after I had a bowel movement. But I was going to the bathroom much less frequently, and that encouraged me to continue. I experienced many flare-ups over the course of the year, but they were never ever as bad as what I went through prior to SCD. At the one year mark, I am having 2-3 bowel movements a day, mostly formed, with minimal blood, and frequent tenesmus. I usually wake up around 8 feeling a slight pressure like I have to go to the bathroom. When I get to work around 9 I forget about this pressure and I end up going to the bathroom for the first time sometime between 2 and 5pm. I then sometimes have another bowel movement around 8 or 9pm, and finally again before bed. The first one is always formed, the second and third bowel movements are sometimes formed and so metimes not. All are accompanied with a hint of blood, but the amount of blood has been steadily decreasing all year. I have tenesmus after my bowel movements, but I feel as though this has been improving as well. My bowel movements also have been quicker. It used to take me half an hour to have a bowel movement. Now it usually takes me 15 minutes. For the first time in god knows how many years, I feel better after a bowel movement than I did before. I actually feel like I have ‘relieved myself’. I’m extremely happy with the results so far.

I should also mention that 2 months ago I had a reaction to Lialda. I went in for a routine blood test and they discovered that my creatinine levels were too high. I mentioned this to my GI, who took me off the Lialda immediately, as Lialda is known to (rarely) cause this type of problem. I have been off all medication since. I went in for a checkup recently and my creatinine levels are back to normal. I have not had a flare-up since quitting medication. SCD has allowed me to feel great without the use of drugs. SCD has also allowed me to sleep better. I used to spend hours at night tossing and turning and trying to sleep. I fall asleep much faster now, with much less tossing and turning. Just another side benefit to SCD.

I have been sick for over 10 years, but on SCD for just one year, so I know I have a long way to go. It makes me tremendously angry that I was never told about dietary modifications as an option by my doctor when I was first diagnosed (or ever, for that matter). Yes, the studies are not there for SCD (there is nobody to fund them). But doctors should at least mention diets like SCD, Paleo, and GAPS, instead of repeating the jaded line that ‘there is no evidence that diet plays a role’. I wish just one doctor would say ‘there is no evidence that diet doesn’t play a role’. Both of these are true statements, but one of them takes control out of the patients hands and gives it to the doctor, and the other puts the patient in control of their own health.

Another thing that makes me upset is when people say that they tried SCD and it didn’t work for them. When they go into detail about their experience with SCD, one of several things has always occurred — they were only on SCD for a few months, or they stuck to SCD 100%, but snuck the occasional illegal food every once in a while, or they modified SCD to include , say, cream for their coffee, which they just could not give up, or they ate advanced ready-made SCD legal food, such as Larabars, before they were ready for them. These are people who are not truly ready to take control of their health.

Many people are still looking for a magic bullet that they can swallow and it will cure their condition, or, at least, ameliorate many of their symptoms immediately. But this is not how it works. If you take a picture of an IBD patient’s GI tract, you will see a tremendous amount of damage. Ulcers and strictures and various other things wrong with the colon. Pills, injections, random things like tree bark, and other ‘panaceas’ will not fix these. SCD is a lifestyle that allows the GI tract to heal itself. You see, these pills and injections tell the body to stop producing the inflammation, so patients frequently feel better from them. But they do not address the question of why the patient’s body is producing the inflammation to begin with. SCD addresses this. By removing certain things from my diet, I am removing the reason for my body to produce this inflammation. The remaining step is to wait for my body to heal, and this takes an amount of time proportional to how long I’ve been sick.

I have not had a colonoscopy since I started SCD. I am planning one for sometime in the next year. Hopefully I have not jinxed myself by writing this. I am not sure how much healing has taken place in my body, but if I never get any better than I am today, and I have to stick to SCD for the rest of my life just to not get worse, it will be totally worth it. I feel great, and I look forward to how I will feel after another few years on SCD.

Medications:

None!

written by KK-SCDer

submitted in the colitis venting area