I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Monday, July 1, 2013

Reconciliation

  Stricture - a narrowing of a canal in the body.   
  Anastamosis - Surgically attaching two parts together through either hand-sewn or stapling techniques.  


"Some days I question my decision- then I remember that I'd probably be underground had I not made this one..."   -Allison Siddle   (No Colon and Still Rollin' Facebook Group)

I was originally going to write this week about pouchitis, j-pouch tips, and working out with a j-pouch, but yesterday another topic jumped out and waylaid me seemingly out of the blue.  So here it goes...

I've tried really hard to maintain a positive, optimistic outlook throughout everything I have been through, and it has helped me to really take all the obstacles I've had to face in stride.  Plus, it's been like some big journey, the destination of which, or the "prize" at the end, is supposedly a well-functioning digestive system, which is the dream that we are all aspiring to.  So here I am, seven months out from takedown, and shit's starting to get real.  The "honeymoon" phase has worn off, and I'm learning what my new baseline looks like.  What life with a j-pouch really means, day in and day out.  The bottom line is that I'm tired of feeling that any part of my life is still dictated by my gut.  It's been eighteen years, the last three of which have been particularly trying, and I just feel like things should be easier by now.

Somewhere along the line, I started anthropomorphising my j-pouch by referring to it as "he" and what "J" likes or doesn't like.  So one of the most difficult things for me to reconcile when it comes to j-pouch life is that while one of my big fitness goals has been about getting cut, the healthy diet that it would take to accomplish that goal (whole grains, lots of veggies, low-carb, low-fat, high-fiber, etc.) is the exact opposite of what J likes, which means the diet that J likes (carbs, fats, no veggies, low-fiber) is pretty unhealthy.

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For those of you wondering about what a j-pouch-friendly diet looks like seven months out, here is the rundown...

Foods I totally avoid:  dark chocolate, whey protein, peppers or anything spicy.  (These foods will have me living in a world of regret for a good 6+ hours if I have even a small amount.  The dark chocolate and whey will greatly increase frequency, and spicy foods will cause hellish butt burn.)

Foods I eat in very small amounts:  nuts, seeds, raw veggies, whole grains.  (These foods will cause increased frequency if I have more than a few bites.)

Foods I eat in moderation:  milk chocolate, cooked veggies, beans.  (These foods are okay as long as I don't go overboard.)

Foods I'm surprised I don't have to moderate: popcorn, carbonated beverages, alcohol, sugar, caffeine, fried foods, soy, casein protein.  (These foods don't seem to affect me much at all.)

Foods that seem to keep J happy:  bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast/bread, yogurt.  (These foods can lower water content, slow down digestion, and reduce bathroom trips.)
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This makes it practically impossible to eat in a way that would be most beneficial for dropping fat, unless I want to spend all day in the bathroom.  I've been waiting for my j-pouch to mature enough to handle a super healthy diet, but every time I try to eat a diet based mostly on lean protein and veggies, J revolts.  I had been trying (again) to make this diet work for the last couple of weeks, and I ended up nothing but frustrated, disappointed, and depressed as I dealt with increased frequency, difficulty emptying, and almost constant anal pressure, which made it very difficult to motivate myself to work out.  In fact, what I was experiencing much resembled the symptoms of a stricture at the anastamosis site between the j-pouch and anal canal.  (More on this later.)  Turns out everything's fine up there - I just need to adjust my eating habits.  But dealing with these symptoms for enough hours, days, weeks in a row can really wear on a person.... And it was yesterday morning that the frustration from living like this collided with my frustration from my obvious lack of progress with my cutting goals (i.e. no loss of pounds, inches, or body fat percentage) and the fallout from that collision caused a minor meltdown.

After a good cry and processing of these emotions, the realization that I came to yesterday is that if I set my dietary and fitness goals around something that my specific health situation will constantly be getting in the way of, I will continue to be nothing but frustrated and disappointed as the two opposing agendas wage war in my gut.  Although I would still love to see myself cut, I cannot eat a diet that causes such gastric distress and expect good results.  (I've eaten no veggies for the last couple days, and all those annoying symptoms have disappeared.)  It was a pretty difficult conclusion to come to, but I figure that the only way to see real progress towards my goals and feel successful is to change my goals.  So at this point I am attempting to change my perspective.  Instead of focusing on dropping body fat, which is primarily accomplished through diet, my goals need to be less about how much I weigh and what I look like and more about about what I can do and accomplish.  Originally I was pretty upset over this since it seemed like my fitness goals were such a big part of my identity, but I need to keep reminding myself that I can still be athletic without such a huge focus on cutting.  In all honesty, this is probably a much healthier psychological outlook anyway.  My fitness plan now will now incorporate whatever makes me feel good and healthy, not what will make me look the way I want, and I will measure my progress by how much I can lift, how far I can run, how many laps I can swim, and how fast I can recover.  This change is one that will still take time to reconcile, especially since I can get quite determined and competitive when I set my mind to something, but I think it's a direction in which I will be able to find much greater success.

When I explained this all to my manfriend in the midst of my cry episode, he mentioned that it sounded like I was still grieving.  Once I thought about it, I realized he was right.  The day before yesterday I broke down and cried at the gym when it hit me out of the blue (again) that I will never have a normally-functioning digestive system in my life.  Ever.  This is something I can never go back from.  I've mostly taken everything in stride, but when it hits me like that out of nowhere, it's kind of hard to wrap my brain around.   Right now as things finish settling in, it's going to be all about learning (and accepting) what my new normal looks like.  Of course there will be some successes and some losses that I will have to celebrate and grieve for as I go.  However, I still have many things to be thankful for, and most importantly, I'm still alive.  Although I may be fighting in a slightly different direction now, I'm still fighting for it.


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11 comments:

  1. i am a loyal reader of your blog from Korea. I just wanted to thank you for being such a big inspiration and encouragement for people like me all around the world (i just went through a 1st of 2step j pouch surgery after 8 years of uc and being steroid dependent).
    it's been 12days since the first op and i am still feeling weak and sometimes i wonder if i made the right decision. i sometimes feel like I am gonna collapse soon. But your posts help me "hang in" and be assured that things will get better.
    in your earlier post, you said " focus on what we have rather than what we dont have." now you no longer have uc, can work out, and live a life :) that's a big improvement. also i heard it sometimes takes a couple years for a j pouch to fully function. so hang in there and fight for it. so will i ^^
    again thank you so much for your blog. you are my hero already.

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  2. This post has helped me. I to am often sad about the fact that I will never have a normal digestive tract. I have suffered with pouchitis and c-diff (contained in the pouch). I did so well for 15 years with the Jpouch and in the lsst 6 I have had so much trouble. However, much of that is due to the stress that has been going on in my life in the last 6 years. I really believe that stress can really mess you up! I often feel like I'm the only one walking around with this pouch. Everyone else looks so "normal". Just wanted to let you know that you made my day a little brighter and less sad. Thank you! susan

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  3. Thank you so much for your comments. They mean a lot to me and are the reason I continue putting work into this blog. I love that we can all connect online like this and not feel so alone. :-)

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  4. You are about 5 months ahead of . Your blog was one of the fIrst sites I found as I searched for what I was in for with this first surgery only weeks after my 40th birthday. Much earluet than I ever expected. You me insight, honest info, sms hope. Keep it up. I am 6 weeks post reversal and still fighting butt burn.

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    Replies
    1. Hang in there. The butt burn should die down within a couple months. At this point the only thing that still causes butt burn for me is certain spicy foods, so as long as I avoid those, I'm good. In the earlier days, though, taking plain Metamucil (psyllium husk powder) a couple times a day would help greatly with absorbing the acid that caused butt burn and would give me some relief. You should give it a try.

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  5. Have you considered trying a very low carb diet for weight loss instead of the traditional low-fat high-fiber diet? How does your pouch handle fatty meats? For what it's worth, a lot of the research that says a high-fiber diet is healthier has to do with colon cancer prevention, which is more or less off the table for us now :) I'm glad to see you're posting again though I'm sorry you're going through a rough time. You're quite a bit ahead of me (my takedown is scheduled for the end of the month) but I am definitely in the midst of one of those grieving/crying in public phases too. Good luck!

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    1. Thanks for your suggestion, and yes, I have tried a low-carb diet. The reason I wanted to eat the vegetables was not for the fiber content but for the nutrients... and to take up real estate in my stomach in the place of carbs; veggies are a very low-calorie food, so I really like my diet to consist mostly of lean protein and veggies, though that may not be possible any more. I discovered later that I can still stay low-carb AND low-fiber, which ends up looking a lot like the Atkins diet. Not very easy to maintain, but it is possible.

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  6. Thank you so much for sharing your experiences with us, sweet girl. Your perspective really keeps me positive about my future. Following close behind you...had my takedown on April 4th. Reading your posts helps more than you realize. Wishing you all the best...Catherine

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  7. Thank you so much for sharing your experiences with us, dear girl. Had my takedown on April 4th, and reading your posts has really helped me to stay positive. I wish you all the best.
    Catherine

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  8. Thank you for your feedback, Catherine! I always love hearing from my readers.

    Just a quick update: the issues in the above post were quickly resolved with just cutting back a little on the veggies, and I am currently having a grand old time vacationing in Cabo. Will write a post all about it when I return, including pics! :-)

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  9. Thank you so much for sharing your story and I sympathize with you as I have felt many of the feelings you have so I know how you feel. I hate to be ruled by what I call, "What I Can Do” compared to “What I Want to Do." O more than one occasion, my brother and I planned a day in NYC to have some fun. Some days I am fine. But also, there have been many days where I had to call my brother that I would be unable to go because of Pouchitis or feeling so horrible with cramps and diarrhea. It does get me very angry.

    I have found many substitutes to take because I cannot have dairy products anymore except butter or margarine, grated cheese and eggs. At first I was using Soy but I developed Kidney Stones from that many times based on the Kidney Stone Analysis. So I use Rice instead; Rice Milk-Vanilla, Rice Yogurt, Rice Dream Ice Cream, and so forth. It tastes good to me.
    As you know, we all have to be on a special diet but no diet is the same. I cannot eat raw veggies at all. Also, I cannot eat raw fruit except Watermelon and Grapes. I don’t eat a lot of grapes though.

    I cannot eat bananas because my gut feels like I swallowed a cannon ball. I am also trying to lose weight myself and that has been a challenge. I need to shed about 15 lbs. so I can get back to my weight to around 155 lbs. It’s hard though because I have to watch everything I eat.

    I saw a Nutritionist and asked her for some advice because I normally bring my lunch to work and was eating a lot of processed meat, like Turkey and Roast Beef. First she instructed me that I need to avoid that and be diligent in reading the ingredients, not just for Calories, but Trans Fat. Taking her advice, I buy myself Chicken Breast (there are several flavors; Smoked, Grilled, Italian Style, etc.) and/or Turkey. They are made by Perdue and are called “Short Cuts.”

    A 9 oz. package can last me 2 or 3 lunches. The Serving Size is ½ a Cup and has; 90 Calories, 0.5% Sat Fat, 380 mg Sodium, Zero G of sugars and 16g of Protein. Trans Fat is zero. The chickens are raised on an all Vegetarian Diet with No Animal By-Products, Cage Free and No Hormones or Steroids Added. They contain NO MSG and are Gluten Free.

    Hang in there and do the best you can. I have my ups and downs too and have other stressors that get me way down myself.

    Rocket




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