Intro:
As I’ve been learning from reading many, many posts from people, I think my situation is pretty common for a person first really coming to terms with the disease. Short story: diagnosed 2005 with left-side colitis, mostly remission since with help of Asacol and then Lialda and steroid enemas. On-and-off flares over the years. Most recent started March ’11, and has been by far the worst one yet. Started SCD 4/28/11. Feeling truly hopeful for the first time in months. Being a vegetarian, I might have a little different experience from others on the SCD, but we’ll see.
Story:
I was dx’d with Ulcerative Colitis in September of ’05, following a stressful bit of time in my life, coupled with what I’m noticing now may have been worse diet over the summer as my parents had left me to my own devices for several months. I was told it had only affected the left side, which is much more easily treated since it hadn’t spread very far. Over the past several years, any flare had been treated by Asacol, then Lialda, then Apriso was the most recent remission-maintainer with steroid enemas used to accelerate the healing process to get me back to normal. My colonoscopy in 2009 showed I had no signs of colitis and the doctor was very happy with the results, as was I, but I didn’t think much of it. I cut way back on my meds and would sometime go months without refilling because I would only take them if I started to notice any changes. I didn’t think anything of it. I was in my last 2 years of college, drinking occasionally, and eating terribly. Frozen totinos pizzas, nothing but cheap bread and cheeses, all processed foods. I’m a vegetarian that doesn’t like fruits or vegetables by choice. If I got a quesadilla, there could be no other veggies in there or I wouldn’t touch it. Same with pizza. All my friends would constantly ask how I could maintain my lifestyle and figure (5’8″, 135 lbs) whereas if they ate like that, they would die. I just always took it for granted. However, thinking about when I had been growing up, my mom had had UC, and she would cook mostly pure foods, with good quality ingredients, and we would have foods that were at least healthier than pre-packaged meals, but were still mostly pastas with lots of cheeses, though since my mom is lactose intolerant, we would usually just have cheddar, which I just recently found out is a safe cheese and why. I had always completely ignored nutrition. I would always hear about ‘healthy foods’ but I had never thought of the opposite as being ‘sick foods’, since everyone I would see would be eating the same terrible things and living alright.
I guess that could be why this last flare is the one that’s finally opened my eyes. I have been living like I was an 18-year old kid for the past 8 years, and now my body’s finally catching up to me. At 26 years old now, I’m now starting to realize I had to grow up at some point. I was going out and partying and drinking profusely many nights a week, staying out till all hours, frequently driving around intoxicated just to see and continue to party with my friends, who were all right around the age of 20-22. It took me this flare up to realize that you can’t continue that lifestyle for very many years, especially with the UC. Since my flares had always been so easily remedied by drugs in the past, and I was always told that diet had little effect, I never really looked into the condition more. I figured I was a lucky one and I got away with beating it after my last colonoscopy had come out clean. Over the past years, I have had frequent flare-ups, almost always being provoked by stressful events in my life, typically October or March is when I would get all tensed up and start noticing symptoms again. I would up on the Lialda or Apriso and wait for the symptoms to fade. In March ’09, I started to get a flare again. By August of ’09 I was having a particular tough one that wouldn’t leave me alone. I tried Rowasa enemas a few weeks, while on a stressful (because of the UC) vacation road-tripping through Alaska with my dad (no daily plans, not the best food options, etc.). After I returned, I went back to the doctor. While on my vacation, I was having BD probably up to 4 times a night and then 10 during the day. I just took it all in stride and kept living as normally as I could, eating badly and having occasional beers with my dad (since diet didn’t matter, I may as well have a beer to dull the pain, or maybe some rum and cokes, my drink of choice).
After I saw my doctor, he put me on the steroid enema. That thing worked wonders. I went from barely sleeping at night to getting through 5 hours and then 8 hours in just 2 nights, and I finally was able to pass gas again without fear of extras tagging along. I stopped the enemas on my own after about 2 weeks and kept the rest of the prescription for a rainy day. I continued to take Apriso as much as I really felt like it (since my insurance doesn’t cover it much, it would usually run me about $300 for the month. So I would skimp on the medicine and just use the enemas for a day or two if I had any reaction. I self-medicated for the next few years until this last major flare that I can say for nearly certain was lit off right around March 1, 2011 when my father returned from a 2-month vacation away from our family business that I had been running in his absence. I was very tense about what he would think of everything, and then we had employees quit on us, and my broth er came in town to run a county fair booth with us and that added all sorts of other stresses on my system that I hadn’t felt ever before. Add to that the prospect that we are also now in the process of taking over a long-time competitor and we are really dealing with a lot of changes, which all becomes stress in me and throws everything out of whack.
I think that’s when my inflammation got real bad. Up till then, I could rely on the steroid enemas. This time, I could get them to hold for more than 2 hours, and would try to do half and half over the course of the night, but I never got that immediate relief that I had gotten from them before. Add to that what I felt was a terrible set of hemorrhoids that I was thinking I had since I would figure that’s why it was so hard to sit comfortably and have terrible amounts of blood coming out in the stool. After seeing my doctor and describing, in relatively light language, that I was flaring again and that the steroid enemas were not working because I could not keep them in, he upped the Apriso rx and told me to try Rowasa again instead. I went home, tried that. I had been avoiding dairy and junk foods for a week or so, but after seeing him and he said I could eat anything not fried or anything leafy, that everything else should be fine. I got overconfident and ate some powdered donuts on the way home, trying to start gaining weight back. I started around 135 in March. I was down to 127 and starting to be concerned about getting enough food. So I started looking around for what to eat, and going by answers.com and other search engine results, I would get simple lists about avoiding spicy things, certain veggies, and other odd things. I followed the ideas like getting rice and fish and such, so I started eating a lot of sushi with rice. No positive changes though. Probably running around 10-15 BMs a day, not thinking that that was terribly out of the ordinary, since I had experienced that on my ’09 flare up for months. On April 1st, I found a website called cureforulcerativecolitis, which laid out one person’s experience in combating the disease mostly just following a diet revolving around food combining, meaning not to combine certain foods because of digestion interactions. She also had a list of natural medications like slippery elm bark, maca root powder, certain protein powders, digestive enzymes, and VSL#3 probiotics. I went out and bought everything on the list, totaling over $200 plus over $100 at Whole Foods on almond milks, sardines, specific rice cereals, etc. I figured that this will still be cheaper than all those prescriptions he was having me take. After jumping on this diet, my BMs became MUCH less painful, but still very frequent.
Around April 5th I went to my GI to let him know of my progress. Once he was that I was losing a lot of weight (down to about 120lbs from 135), he decided he needed to have me do a colonoscopy. I told him I was on a new diet that I was feeling in a lot less pain, and he said that if I get better before the appointment, I could cancel. I had just started VSL#3 and was super hopeful about what was happening to me, but I was not feeling any better. So I did the colonoscopy. The prep this time was terrible, but I suppose not as bad as it could be. Since I had already lost a lot of weight and I didn’t seem to have much in my passage ways (I was seeing solid lettuce and broccoli coming out the other side), I figured there couldn’t be much that needed to be pushed out. And I was mostly right. Everything was liquid, and I had just gone through 2/3rds of the bottle, so I stopped, figuring I was done. Then I started movements at 3am and solids were coming out. I tried choking down more of the bottle, but could only get it to 3/4s done and it was like 6am, and I thought I shouldn’t be drinking any more of the stuff since my appointment was at 8am.
After the procedure, I didn’t see my doctor at all, but I was told he would be calling a prescription in for me. Eventually I get the prescription, and it’s for 1 20mg Prednisone, once daily. So I start it that Friday, go through the weekend, and then go in to see him Tuesday. I told him that there wasn’t very much progress, and I was still losing a lot of weight. Then he told me I should have been on 20mg twice a day, and that’s why I could still be struggling at night though my days were more tolerable. I was still not able to sleep through the night, and now my hemorrhoids were getting worse and I couldn’t sit or walk comfortably. He had no advice for this but to use Prep-H. I went to an acupuncturist that is a family friend and got some Chinese herbal medicines and some diet ideas to help me out.
By this time my weight was dipping into the 100s, and I was really feeling malnourished, even though I was drinking a lot of sweetened almond milk, eating fish, and having protein shakes a few times a day. So I went shopping and got as many fatty-looking foods I could get my hands on that didn’t have dairy or gluten (since I had thought that might affect things). I am vegetarian, so my meat options were limited to fish and any soy-substitute products. So I started eating a lot of soy cheese, tofu hotdogs, eating soy ice cream at night for a boost in calories. My weight got back over 110 again, but BM frequency shot up and pain was increasing again.
So I went back to the internet to look for other people feeling like me, searching for anything about food and UC, but usually on a specific basis about soy products or cheeses or whatever I planned to eat that day. It wasn’t until later that I finally found someone talk about the SCD diet again. I had found out about the SCD diet the same night as I found out about my other food-combining, etc. guide. Since that plan seemed so much easier and less restrictive, that is what I had gone with. There were no food restrictions, just advice on what not to combine with what. Too bad it didn’t work to fix anything but the pain. My colon was still not cooperating with anything. So as I was searching the internet, I finally found this site and others like it all about the SCD and testimonials about how well it worked for them. I was continuing to lose weight, facing the idea of larger steroid doses or hospitalization if I didn’t show real progress. So I was ready for anything, and this was irrefutable seeing how many people had had success here changing diet. So I started following online recipes and ideas of what to eat. Then starting 2 days ago, I’ve started fresh on it, just having eggs and bananas and fish (since I can’t eat meat, all the chicken soups and broths are not possible for me). I made some SCD peanut butter cookies not realizing that they were not really for beginners, and I had a big smoothie with all sorts of advanced berries that didn’t cooperate well the next day, but not that I know the stages, I’m feeling the best I have in weeks, and that’s just after 2 days haphazardly hitting-and-missing on the intro diet. Now that I know about the intro diet, I have rapidly increased in what I feel is healing.
I went to my GI yesterday again. He saw my weight was at its lowest yet at 104, and after hearing that I was still having 10 BMs a day, he is very concerned and ready to put me in the hospital if I’m not significantly better in a week. I told him all about the diet, and how much improvement I felt after just a day on it, and he was mildly receptive to accepting my experience with diet effecting it after I told him of all the other results people like all of you on this site have shared with me and others. He said that the Prednisone should have gotten me normal by now and that I wasn’t was a sign that I would probably have to get on the Remicade if I don’t get better in a week. I really think that the Prednisone has been working, but my previous diets would keep getting in its way. The bleeding has been gone for the past week, but still nothing but D, and a very annoying external hemorrhoid making things painful every time. Now I got a prescription for that, and that is rapidly going away, and getting on the right track with the Intro Diet is really accelerating what I feel is like healing. I’m still at a complete loss on my weight control, but I’m trying to do whatever I can to up my calorie intake, but it’s tough in the beginning.
So that about catches me up to my current state. I know this is a ridiculously long story, but I haven’t really had anyone to share it with besides my mom and dad, who have heard about it plenty just by being here with me through it all. All in all, I’m just at the beginning of the future of my disease. But seeing all the hopeful people on this site, and reading about people being in remission for years with no medications is amazing. I have been running through meds costing me hundreds of dollars a month with no real comfort or solution. I just hope someone else can be like I was and read another story they can relate to and realize that this is actually positive to get through. I was feeling really alone with this disease. I couldn’t eat like normal people, I couldn’t go out with my friends because of the bathroom issue, and I would just hide away at home, trying to get better. Now that I have found this community, I am so full of hope, and I look forward to what co mes next.
Now, questions to the audience, if anyone has advice on these issues I’m still dealing with, please let me know.
I’ve tried to read every thing I possibly can around the web, but personal responses are probably the best thing to seek.
1. Is anyone else a vegetarian that has gone through the Intro Diet and into Phase 1 or 2 and been able to put on significant weight quickly? What kinds of foods should I be capitalizing on? When do you think I can start integrating cheddar or other cheeses into the diet?
2. Should I be exercising to help me get some of my weight back on? My arm and leg muscles seem to be the most emaciated things lately because I’ve been so sedentary (I usually would play ultimate frisbee and soccer twice a week, plus kayaking on the weekends). But I’m afraid that any exercise I do would counteract any calories I’m trying to build up.
3. What are peoples experiences with almond flour in the beginning of the diet? I really feel like if I can start getting baked goods into my diet, I will be able to gain the weight back a lot faster. I would be mostly concentrating on Banana breads or the Basic bread recipes.
All in all, let me just thank each and every one of you who has posted stories or comments on this site or elsewhere. And thanks Adam for running this site. I have especially enjoyed your posts, and it may have actually been your make-your-own pizza video that really convinced me that I could deal with the SCD as a long-term fix for my condition.
Medications:
Have been on Asacol, Lialda, Rowasa, Apriso, and steroid enemas for past flares.
Now on 20mg Prednisone twice a day for 2 weeks with real improvement only starting when I started SCD 4/28/11.
-Will
UCTwinMom’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!
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