My Coming of Age Story with My Ulcerative Colitis

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

 


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10 Responses to My Coming of Age Story with My Ulcerative Colitis

  1. Adam
    Adam May 2, 2011 at 6:15 pm #

    Hi Will, great questions,

    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?

    My response: I’m not a vegetarian, so can’t help much with an answer there. As for gaining weight, I think that you might have some good success with eggs. That is something I was eating in high volumes when I was starting out the SCD diet and dealing with major symptoms. If you eat them, maybe trying hard boiled eggs and seeing how that works for you, and then trying some more might be a good idea. I would hold off on the cheese until your symptoms have gotten much better(no bleeding and semi solid stools at least)

    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.

    My response: Marathon running, weight lifting etc… I don’t think that would be a good idea for anyone who is dealing with active symptoms and trying to gain weight. But some light walking around the block, (walking can be tons of fun I think) might be a better way to get your body moving again. Once you’re feeling much better, and putting on some pounds if that’s your goal, that might be a better time to start doing some more physically demanding activities/excercises. Stretching though, I think is a great as long as you don’t feel any major aches and pains.

    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.

    My response, almond flour and nuts are very tricky, some people have great results with them earlier than other people in terms of the healing process. Many people find that almond flour and other nuts and nut butters are only things they can add after several weeks or months of life with a healed colon. Others find they do just fine with almond flour baked goods after just a short time of healing or even before fully healed. Its seems to be another one of those foods that is a good one to test out once you’ve seen good healing results and symptosm going away and then take it slow from there with adding more if you accept it well.

    I guess an over-ridding theme with the SCD diet is that getting you colon healed is priority #1. Most people who turn to SCD (myself included) want to gain weight after so much weightloss, but instead of trying to jump the gun and start packing in the cheeses and almond flour, make sure your body is healed and working properly before jamming it with those more “advanced” foods.
    good luck to you Will, you’ve got a great personality, it comes through in your story and I can’t wait to hear how things turn out for you!
    -Adam

    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.

    • Ali August 12, 2012 at 2:19 pm #

      This is an old post so I don’t know if anyone will see my response but I found Great Taste No Pain diet about 3 weeks ago and it has been exceptional. I’ve had no remission for almost 3 years and in the space of one week 95% of my symptoms are gone. I’ve seen the other diet, too restrictive for me – but I tried this and it’s working. Will it work long term – who knows – but right now it’s been terrific. It a food combining eating plan but I think much easier than the SCD (sp?) diet.

  2. Will May 2, 2011 at 7:42 pm #

    Thanks Adam! I didn’t realize how long my story was until I saw it posted (sorry, potential readers!)

    It’s been a few more days now since I started the diet, and have been sticking with it as strongly as I can. Had banana pancakes for breakfast, sardines for lunch and a scrambled egg for a snack, fish for dinner. BMs are much less frequent, I’ve had solids again about 30-40% of the time. However, the fatigue and continued weight loss is still killing me. I barely have energy to even walk around, and end up just sitting in front of the computer or laying down all day. I’m hoping that at least the weight will come back soon to start filling out my muscles again. I won’t be trying any marathons or heavy lifting, but even a nice walk around my backyard for 30 minutes is tough on my muscles now, which I never had a problem with before. Maybe it’s the die-off?

    I’ve had only very small amounts of blood a few times over the past 2 weeks or so, and little abdominal pain or cramping and am just dealing with very light D 5-6x in 24 hours, with some solids and painless, so maybe things are ready for me to add something heavier back in? Whil I am preferring to stick to SCD options, being under 100 pounds and not seeing any positive weight progress so far has got me tempted to re-introduce gluten-free pastas and breads into the mix, even though I know those are all SCD-illegal, but I’m getting desperate. I hadn’t really tried that kind of diet change before for more than 2 days. Does anyone else have major reactions if just letting some of those back in? I believe so wholeheartedly in the SCD because of all of the testimonials I have read, but I don’t know if I can continue eating nothing but eggs, bananas, carrots, and fish for much longer. Any further advice is greatly appreciated, as I don’t have much other sources to ask at this point.

    • Adam
      Adam May 2, 2011 at 8:49 pm #

      Hey Will,
      I really feel weird asking you this considering you don’t eat meat and are vegetarian, but have you considered eating any meat just to get started on this new diet, and to see if you can bring everything into full remission or at least to the 1-3 hard bowel movements a day, with noticable weight gain in your case?
      The reason I ask is its a very big part of the intro and SCD diet, and most of the people who are on SCD that I know are not vegetarian.

      • Will May 2, 2011 at 9:22 pm #

        I have considered it, but I’ve always thought that going from only eating fish to anything like chicken or other meats would put a strain on my already delicate digestive system since it has never had to break down those kinds of proteins before. I definitely wouldn’t be able to handle the bloodier meats that a lot of people go for at the beginning as I’m sure that can’t possibly be good. I was considering at least making broth, since the anti-inflammatory aspects are talked about so much, but it feels like inflammation isn’t my most major problem right now, it’s the lack of energy-creating foods. I had skipped going just gluten-free and dairy-free and went straight for the SCD, but I’m reading more now about some UC’ers that were able to have at least moderate success with that, at least for a while, just until I can build back some weight and strength. Any thoughts on that approach? I know this site is pretty much all dedicated to pure SCD, but I’m really starting to think I might need the slight deviation, and this is one of the best communities I could find with open-minded individuals, so I hope I’m not stepping on any toes by talking about it not being my best option at the moment. I’m just looking for the best, honest advice I can get, and I believe that you, Adam, and the many other posters here have the best answers I have found so far in beating this condition as naturally as possible.

        • Adam
          Adam May 2, 2011 at 9:33 pm #

          Hey Will,
          One thing you never have to worry about is stepping on any toes. Nobody here knows you like you do. And the fact that you are doing as much research into what success and failures other people have had with treating their UC is going to be invaluable to you no matter what decisions you make. Super commendable in my opinion. I’ve got no doubt in my mind that you’ll soon enough figure out an approach that meets all your needs no matter what treatment program(s) you use.
          I can’t think of anyone at the top of my head(as I’ve read through literally hundreds maybe even thousands of stories and experiences now) but what you are talking about surely has been tried before, and my guess is that others have had success with manipulating the diet to a certain extent for limited amounts of time etc…
          Again though, full absorbing of foods we break down and eat to my knowledge doesn’t happen at its optimal level until the colon is healed, and that is a big part in the philosophy behind the SCD protocol, especially with regards to the intro diet portion.

          Looking back on my own personal experiences though with SCD, the first time I started it back in August 2009, I was breaking all kinds of rules I realize now in hindsight (potato, small amounts of milk in my daily coffees etc… corn tortilla chips OFTEN…) and I definitely still noticed all kinds of good results. Since then, I have gone MUCH more hardcore strict with the diet, but I can’t deny that my broken SCD introduction was working really well(for about a year). So anyways, I guess what I’m trying to say is that everyone is different, and sometimes what works well for someone else, isn’t always the case for you etc…

          • Will May 3, 2011 at 9:00 am #

            Thanks Adam! It’s definitely encouraging to know that even a broken SCD at least at first can bring some benefit. Before I was trowing all sorts of breads, soy-meat substitutes and pizza at my gut to try to get it to gain weight to no avail, but now that I have the SCD guide for healing things up a bit, I at least know where to start. My medication (having only been on the Prednisone about 2.5 weeks now) has been a massive help in my symptoms from what I was having before them, but as soon as I started these diet changes, the results have pushed me forward a lot faster, and I encourage anyone that can do the SCD to do it at 100% as I do believe that’s the fastest way to full recovery, especially if medications are no help at all.

            Last night I did break off and have some gluten-free pasta and bagel with all other SCD-legal items, and I already feel a little more energy coming back to me and less fatigue, so I’m thinking that this might have to be my path to stability for now. Of course, I will continue to update as things go. Thanks again for the support!

        • Kathy p May 3, 2011 at 6:45 pm #

          I agree with Adam- maybe you should go out and buy a boneless skinless chicken breast and boil it with some carrots. I found some gluten free sweet and sour sauce made with honey(may nor be SCD legal but adds a different taste if u put some on the carrots). Did you try the SCD yogurt? It will take a long time to get your energy back, you need to be patient with that- your body was probably nutritionally depleted before the flare. Are you taking a multivitamin? Also, you can use coconut oil- it is hard in the jar, but put the jar in warm water And it will turn to liquid. This will add calories and can give you more energy. Can work uP to 3TBS a day- add it to yogurt, use it to make eggs…
          My husband refuses to do strict SCD so I use sone Udis gluten free bread, white rice otherwise he is SCD. The almond flour banana muffins are a staple- for the whole families.
          Good luck
          Kathy

  3. Will May 5, 2011 at 7:35 am #

    Just an update to everyone, maybe I’ll make another post later on, or maybe I’ll just leave it here for easier ability to track the story.

    Well, I went to the doctor one more time after a few nights ago I was no longer to stand the pain and constant weight loss. Having exhausted every possible option, my mom took off work to go with me to see the doctor. Since Prednisone had not offered the quick results we were hoping for and I kept clutching my diet change plan to cure me, he had to wait till I had lost 30 pounds before I would finally listen to him about the next drug option, Renicade.

    He told me it was usually 50/50% chance of working, and he had about 2 out of 3 patients that needed it that it worked for. So I dove in. Total hospital bill for the room rental and the IV drug and all that would total over $38,000. My insurance will cover all but my out of pocket expense of $3,000 per year, so at that rate, it works out to $250ish a month, well worth it if you have good insurance to cover.

    If not and you must go the natural way, stick to the SCD, it’s the last best hope if all the rest of the drugs don’t seem to work anymore. But if you have the opportunity, don’t automatically discount medication in order to live a completely normal, no-dietary-restriction lifestyle (if you really wanted to, though I know I will never eat the SAD again after all the knowledge I’ve learned).

    A thing I realized is that when doctors tell you that ‘diet has no effect on this disease’ they are basing that on their knowledge of treatments they see, and if they see that most people are able to treat it and live on a completely non-restrictive diet, they’ll have no reason to believe otherwise. I won’t be opening up my eating strategy full-throttle though, I am still going to learn about any certain food allergies I may have and other reactions that I had never thought of before. I’m really hopeful that I won’t have to go on SCD by necessity, which for me, at how it was working out for me while flaring, was impossible to actually work with. So I pray that my latest medication works like it has on the other 67-80% of people where it seems to keep them healthy, active, happy, and ignorant of all of the diet restrictions that I was having to try to limit myself to.

    I know it’s another long ramble, but I like to keep good records of my experiences, I guess, and I hope that anyone that can share any similar stories will join in.

  4. Will May 5, 2011 at 8:34 am #

    I just realized how this may have come off. I had kind of forgotten that most of the people that are here are here because they have already either exhausted their drug options, or just can’t possibly afford the current medications available to treat the condition, and this diet is the one last shot at a life. I’m sorry if I appeared insensitive, having realized that I may be preaching to the choir here about how the medicines can work, without realizing that many of you already know that, but because of inability to pay the extreme costs without insurance, or the drain of feeling like you have to be medicated, or simply that all drugs failed to work for you, you just don’t have any other options left like I still had that I had taken for granted. I’m sorry if I came off that way at all. I hope I didn’t.

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