Ulcerative Colitis & SCD or Too Much TV & Holistic Healing

Back in November of last year my stress level was at an all-time high.

The marketing agency I worked for was getting into more morally ambiguous work and management seemed to be getting crazier by the day. Work hours became longer as the end of year approached and as a result my diet swung away from home cooking and more towards fast food. At the same time I noticed that I didn’t feel 100% anymore. I constantly had strange aches, felt groggy and never slept well. I attributed it all to stress and went on.

By December the rush for year-end earnings had driven everyone to working overtime and being on-call 24/7 so I decided to call it quits. So, I started looking for jobs in my local area as well as at larger agencies and bigger cities. Overall it felt amazing to have extra free time and not have to deal with the insanity at the office. I did however try to cut costs where possible and this included my grocery shopping. My diet went from 50% organic / 50% processed food to 10% organic / 90% processed food.

January rolled around and everything was getting worse. All the typical UC symptoms started appearing (although at the time I simply thought I had the flu or something similar). I had also been on anti-anxiety medication (Zoloft and Xanax) for years and was worried that it stopped working, that I had built up an immunity to it. My day-to-day life had been centered around nonstop multi-tasking for years and without medication I’d forget to eat and sleep if work was too hectic. So I finally packed a bag with a single change of clothes and drove up to see my family doctor. It was a good excuse to get out of town and I hadn’t been home for awhile anyway.

The first opinion I received was that I needed a colonoscopy but without a job- no insurance. The doctor said it was a standard recommendation based on my symptoms but he honestly thought the Zoloft was causing all the symptoms and I should stop taking it. I was taken back and asked what I should do if the anxiety attacks returned to which he replied, “Overcome.” This quickly led to a second opinion where they told me I had some sort of infection from eating sushi and prescribed Flagyl. The next week resulted in a full UC flare, took all my energy and made it near impossible to keep down food.

Finally I gave in and agreed to get the colonoscopy. The prep, as you all know, was awful and I only drank about 3/4 of the jug. The procedure however was completely painless and easy as could be. Upon waking up a doctor walked into my room and said I likely had Ulcerative Colitis, ignored several of my questions and walked out. The nurses were kind enough to answer a few questions for my father, who had driven me there, but in the end I felt shoved aside and ignored. I was just told I potentially had a chronic disease and the doctor couldn’t even take the time to explain what it was, how I got it or what I do next.

A week went by and I bought a stack of UC books including Breaking the Vicious Cycle and Recipes for the Specific Carbohydrate Diet. I found blogs such as this one, ComfyTummy the SCDLifestyle podcast. With all this information I felt incredibly informed and much more in control of what was happening and how to proceed. The symptoms however had gotten incredibly worse. I was running to the bathroom up to twenty times a day, I couldn’t get in and out of bed by myself and was in excruciating pain. I’d call the GI doctor every day and explain my symptoms but I’d just get blown off and told that they’d see me in a week for my initial appointment. When I finally did walk into the office the doctor took one look at me and admitted me into the hospital. I couldn’t walk by myself for long distances and I had lost thirty pounds in the previous month. That was also the last time I’d see that doctor.

The hospital stay lasted five days and resulted in more television than I’d seen in a year. Trouble with dehydration led to several popped blood vessels and each meal was 30% gel-based soup and 70% sugar-based juice or jello (hardly SCD legal). They started me on Lialda and Prednisone but after a few days went to Remicade. At the time I wasn’t told of any side effects or even what it was, just that it was the next step and would definitely help. I consider it a necessary evil because at the end of the week I was released and could finally walk on my own. As a side note, never let a tech put contrast and potassium in the same IV, it feels like a red-hot axe tearing through your arm.

During this time I received my genetic test results from 23andMe which I had sent off for roughly a month before simply because I’m a tech geek and it interested me. My ancestry lay in southern Spain and Sweden and apparently my eyes are blue and my hair is curly. I have a weakness for the medication Coumadin. What completely floored me was the chart labeled High Risk Diseases. In the top 5 were Ulcerative Colitis, Crohn’s, Colon Cancer and Stomach Cancer (the fifth was macular degeneration if you’re curious). I’d never even heard of UC when I took the test but now I was looking at genetic markers that showed it had always been there, waiting. Looking back I wonder if I could have kept it away by adhering to the SCD before I ever got sick but then again, would I have adhered to the SCD before I got sick? I don’t know, so ultimately, it’s just incredibly interesting.

Back home I started preparing SCD meals and doing some light cleaning for a bit of physical activity. In a small rural town it wasn’t easy to find food that was 100% SCD legal and beyond that my parents were taking care of me and doing all the shopping. They were saints but I don’t think they’d ever looked at an ingredients list before then. Luckily there were only a few hiccups and I quickly began feeling much better. Within two weeks I packed up my one change of clothes I had brought with me and drove back to my apartment a few hours away. Not only that but I had scheduled an interview for the following Monday.

The interview went great, I got the job, and I’ve been 100% on the SCD since February when I got out of the hospital. About once a week I do have some slight stomach pain, and I still have to go to the bathroom twice each morning with a very mild bit of urgency but overall I’m feeling much better. Remicade has resulted in a small amount of deep muscle pain in my lower legs and I’ve signed up for monthly massages (a combination of Shiatsu, Swedish and acupressure) as well as doing light yoga at home. I’ve started tapering off Prednisone and other than that I take Lialda, Zoloft, Align, Freeda SCD Multivitamin and Vitamin D. I’ve ordered Gi ProHealth’s ProZyme’s as well because I’m not convinced Align is the proper thing to take. The Zoloft also concerns me as I’ve heard it sometimes causes issues with UC but I have yet to do enough research.

Like I said before, all the books and online resources have been so incredibly helpful. They’ve honestly been more informative and emotionally-aware than any doctor I’ve come across. iHaveUC was the first site I found and during my time in the hospital I spent hours each day reading over the posts. I’ve also thoroughly enjoyed the SCDLifestyle podcast and Jordan was generous enough to give me tips and outline my path to wellness even more-so. Tracking has helped immensely- each day I track my weight and meals with DailyBurn and each night I track my sleep quality with Sleep Cycle (both iPhone apps). That way I can see correlations between my diet and my sleep as well as how yoga, massage and even wearing a sleep mask affects how much rest I’m getting.

The doctors have all been generally oblivious to diet and it’s relation to IBD. Initially I made the joke, “I can eat anything?! How about Taco Bell three times a day?” to which the doctor replied, “Yeah, diet has nothing to do with it, eat anything you want.” Now, my first concern is that any doctor who approves Taco Bell three times a day, even to a healthy person, needs their license taken away. My current doctor only has one restriction however and that includes dairy, to which I agree. I tested out various cheeses and a few other products only to find out that it gave me a runny nose and minor congestion. I still act like an evangelist for Breaking the Vicious Cycle when I go into the doctor’s office and it’s important to be your own advocate. Modern medicine rarely takes a holistic look at illness and hey, it’s your body, put some effort into it! Personally I’m signing up for “alternative” healing such as massage, acupuncture and looking into holistic doctors. The thing is, if I go once and feel amazing afterwards then I can stick with it. If I it doesn’t seem effective or I think there’s something else better suited to me, I just won’t entertain that particular method of healing anymore. Everyone’s different and I’m open to playing guinea pig for a few months to figure it all out.

Psychologically I’ve noticed a huge change in myself. Before I was diagnosed I would literally be doing a dozen things at once and sleep was a nuisance. I’d often think about staying up all night just to get more done. I was eating out every day and spending extra cash on nonsense things. I’d also started looking into jobs in larger cities and for awhile had been stuck on moving out to San Francisco. After being diagnosed however, I spend two hours in the grocery store slowly making my way through the aisles. I’m curious about what products they have and what the ingredients are. I take the time to ask questions and walk back-and-forth to ‘prepare’ meals as I’m shopping. I don’t multi-task hardly at all anymore and the idea of moving to a larger city is far from my mind. Focusing on one individual thing however, and putting all my heart and soul into it, is much more rewarding. I’d like to design a few skateboards, just for my own wall, and when I get to it I’ll focus only on that one thing. Right now though, my health is my main concern and with my new zen-like outlook I’m loving each day that I wake up in good health.

I suppose I should shut up for now. Thanks for reading, I hope this helps someone out there as much as the other stories have helped me. It’s good to relate to others and even if it’s a small detail, it’s amazing to know that someone else has experienced the same thing.

 

– Submitted by “Ampersand”




Ulcerative Colitis Tips


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8 Responses to Ulcerative Colitis & SCD or Too Much TV & Holistic Healing

  1. Steph March 21, 2011 at 12:07 am #

    “Now, my first concern is that any doctor who approves Taco Bell three times a day, even to a healthy person, needs their license taken away.”

    YES, this! I’m thinking about going to my doctor and playing dumb saying “hey I get sick whenever I eat (list off a bunch of SCD illegals), what should I do?” He’ll probably be like, “well then don’t eat that stuff.” and I’ll be like “HA! You said diet didn’t matter? Which is it?” But maybe it isn’t nice to play mind games with your doctor.

    Thanks for the happy story. It sounds like colitis hasn’t slowed you down much at all, and you are just taking it on head first. SCD is awesome. I’ve noticed since I’ve started it I’ve been working to simplify a lot of other parts of my life and live more naturally. You should post skateboard pics when you do it!

    • Ampersand March 22, 2011 at 4:43 am #

      Haha! Tricking your doctor into agreeing is actually pretty clever! Their reluctance to admit it confuses me even more considering quite a few of their patients probably say the same thing… Oh well, I suppose they’ll catch on eventually.

      I hope to do updates every so often so maybe I’ll sneak some skateboard pics in there if I can. ;)

  2. helen March 21, 2011 at 3:11 pm #

    Love your outlook to life! Hope to have as much enthusiasm as you do someday towards my own. Good luck and good health to you.

    • Ampersand March 22, 2011 at 4:53 am #

      Good luck to you as well! The books and online resources were really my saving grace. I expected to be thrown into an emotional and physical talespin when I heard my diagnosis but having all that information and always being one step ahead really kept me sane and moving forward. There’s also a lot of things, like surgery, that I haven’t experienced and maybe that would knock me down a couple pegs but in the meantime I’m doing everything I can to stay in good health.

  3. Reid Bryant Kimball March 21, 2011 at 4:14 pm #

    Isn’t it amazing how SCD opens up your mind and suddenly it clicks that modern society is all fubared? It did for me. It’s so much more than a “diet” or a “lifestyle”.

    It’s a “healthstyle”.

  4. Linz March 21, 2011 at 8:09 pm #

    Great story! SCD has definitely opened my eyes to processed America. It’s amazing how much garbage goes into food on the shelves.

  5. Angel Ramos March 22, 2011 at 8:46 pm #

    Great story. Keep the faith in the diet…it works…

  6. Sherry March 23, 2011 at 2:11 pm #

    Yeah, my doctor has been totally dismissive of the diet too. She at least says diet can affect symptoms (and told me not to eat broccoli and other fibrous vegetables if I was having any symptoms), but that diet does not have anything to do with flares or controlling the illness. Oh well. The thing is they can never prescribe the diet because of all kinds of insurance reasons. I told her I use probiotics and she said they can’t prescribe them as a treatment, but if I wanted to use them as a supplement that was fine. I wasn’t actually asking for them as treatment, but I was glad she said they have seen some benefits in symptom relief with them.

    Now, the nurse asked me if I followed a special diet, and asked if it was gluten free, so it seems patients must have opened up to her about SCD or GF diets for UC and Crohn’s.

    Anyway, great story. I work in marketing too, and it’s not the easiest profession for IBD. I have travel sometimes and there seems to be a lot of going out to eat and getting drinks.

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