6 Months Later: Jaypouchirifical
by Brevin on Tuesday, November 10, 2009 23:07I don’t want to steal thunder from Lizz’s post below. Nay, instead she actually inspired me to post my update. I would just do this as comment for her post but I don’t know how to add pictures as a comment.
November 11th will be my 6 month anniversary of the first surgery and well, it’s pretty amazing. So much so that I have no idea what word in English conveys this clearly and am thus establishing the word jaypouchirifical. This is what I’ve been up to and how my body is responding:
Weight: When I had UC, my weight would fluctuate as I had flare ups. When I got out of the first surgery, I was coming in at a 152 pounds. Now, I’m sitting around a 183 pounds and, here is the best part, it no longer fluctuates all over the place. I’m super proud of this achievement. It means my body is stable for the first time in 8 years!!
Poop: I still go more than an average person, but come on, people. Come on. During UC I had constant pains and had to run to the bathroom every hour or so. I now don’t have to rush or anything. It’s all rather casual now. My stool is also more controlled now (you know: solid, smells like flowers, wins awards).
Diet: I have less restrictions now than when I had UC. I started slowly, sampling various foods and transitioning my diet to new food groups. So far, everything is good. I do avoid a few certain styles of food because, well, the results were mixed. Leafy salad, corn, and Mexican food aren’t on my Favorites List, but there hasn’t been a food that totally wrecked me. For those concerned about Mexican food: no, you won’t have to sacrifice the deliciousness. But I do recommend you pace yourself ha.
Fiber: BeneFiber is awesome. I don’t have to take it as often. In fact, I haven’t’ taken it in over a month. Instead, I just take it when I’m going to try a new food or eat something that I know will cause issues (looking right at you, soup).
Meds: Aside from the occasional Pro Biotic (VSL #3) and multi-vitamin, I currently don’t take any medicine. For someone who used to take 12 Asacol tablets a day on top of other fun pills for many many years, this is extremely liberating. Weird, almost. But I feel like I earned this freedom by going through with the surgery.
Exercise: I go the gym 6 days a week. I’m not trying to get buff or win World’s Strongest Man, regardless of what my previous claims might have implied. Instead, I’m just really, really, really excited about being healthy again and am trying to maintain my health by helping my body out.
Scars: Check it out:
Aside from the large scar that I've had since I was a wee baby, you can barely tell.
Team Challenge: I learned about this from fellow j-pouch community member Elise. Team Challenge is having a fund-raiser half-marathon this December in Las Vegas for the CCFA and I’ve been training dangit. When I had UC, I couldn’t run unless it was straight to the bathroom. Now, get this, I can drive to the city, train, come back, and THEN use the bathroom. And when I say “train” I mean pretty long distances. This past weekend was 5 miles walking and 5 miles running. I’ve never run 5 miles in my life, ever. It’s soooo motivating to be surrounded by a team members all gunning for the same cause: finding cures for UC and Crohn’s. And yes, I’ve been raising funds. All of my fund raising goes straight to the cause: YOU. I’m doing this for everyone affected by UC or Crohn’s. I hope to make you all proud! Here is my fundraiser page. Lizz you better donate a grand or I’m sending you “questionable” pictures.
Training for a %$#ing half marathon.
ML says:
November 12th, 2009 at 2:17 pm
This is wonderful news that you are doing so wonderfully.
My surgery is this coming Tuesday and I am feeling a little anxious today. It’s funny because I read all these posts about how in the end nobody regrets the surgery. That they are leading a much better life. But I am worried I wont be. You see I will be going backwards. I have been in remission for SO long (over three years) that I pretty much feel I am so far removed from my memories of what it was like to live with active colitis. I am having this surgery because of bad cells (high grade dysplasia) and the chance of colon cancer. Now DONT get me wrong. I dont have cancer and I KNOW this surgery will save me from having colon cancer. But dang it, I am happy and healthy right now and have no issues that I use to have with my UC. I just am feeling low today about the surgery and why I have to have it. I need to regroup and look at the big prize that I will be around a lot longer with the surgery and never have a flare again even though I havent had one in over three years.
Again, Congrats to you! I hope you do well in the run!
ML
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Jason Haas Reply:
November 12th, 2009 at 4:28 pm
ML: I just had my takedown last Thursday and had a similar fate as you: I had been in remission for over a decade and considered myself “normal”. I too suffered dysplasia which resulted in the decision to have the jpouch. I have been skeptical, as I know that I’ll be going more than I used to, but hopefully this will be the last. No more concern about cancer, no more colonoscopy preps (yeah!). So far, other than pains of getting the pouch adjusted, I have much more control than expected. Take is slow and keep your head up. Don’t focus on the past: You have no control over that. Good luck on your upcoming surgery!
- J;
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mg Reply:
November 12th, 2009 at 6:47 pm
ML,
I really relate to your feeling a little down about the upcoming surgery. I too have been in remission (1 1/2 years) and just had a colonoscopy that revealed dysphasia. I also have a very strong family history of colon cancer. So, the doc recommends removal of my colon and I have an appt. with the surgeon on Dec.1. It came as quite a shock because I’ve been feeling so well, and have had zero symptoms, and have gained all the weight back. Although it’s a hard thing to hear, I’m glad I have a few weeks to research, plan and get used to the idea. It is nice knowing the threat of cancer will be gone. The colitis will be gone too. I hope with the j pouch that all the dark clouds of worry, embarrassment, and weariness that come with colitis, even the inbetween-flares times of colitis, go away. I wish you the best with your surgery and recovery.
mg
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Mark Reply:
November 15th, 2009 at 7:04 pm
ML, I can’t imagine how difficult this would be to enter when not having physical symptoms but something hidden that you have to remove. All I can assure you of is that your life will be altered and recovery from the surgery may have some challenging moments. But giving your children a long healthy life with their Mom is worth the jpouch. And also giving you the guarantee of zero cancer is wonderful for you. I follow Becca on her blog and she has been fighting many years colon cancer and that disease has truly dominated her life. http://thecolonchronicles.blogspot.com/ Visit Beeca’s site. Although this surgery isn’t what you’d like, the outcome of no cancer worry is priceless. Hang in there and we are all here to get through your recovery time (both the good and bad times). Mark
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Elise says:
November 15th, 2009 at 12:03 am
Yay!!!!!!!!!!!!! Team Challenge in Vegas is only three weeks away!!!!!!!!!!!!!! I can’t believe I am doing this either, even though I have a permanent ileostomy, I am still better than ever!!
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Brevin says:
November 20th, 2009 at 12:35 pm
What’s up with UFC fighter Brock Lesnar? He had intestinal surgery as well, but I can’t find any detailed info other than: http://sports.yahoo.com/mma/news?slug=dw-white111809&prov=yhoo&type=lgns
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ML says:
November 24th, 2009 at 7:22 am
b- I am at methodist in the medical center in downtown houston. This is the first time I have logged in. Road is hard and I cant type and think at the same time. wont be on for long as gettting up up to pee makes me wasnt to sleep for like three hours.
thanks for thinking of me.
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Brevin Reply:
November 24th, 2009 at 10:53 am
ML! You hang in there or I’m coming to Houston to kick some buttocks. I’ll keep sending up some prayers, but I wish I had this super power where peeing makes you sleep for three hours (three gallons of Gatorade = no insomnia!)
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Emily says:
November 24th, 2009 at 9:44 pm
Brevin~ Good luck in Vegas! Will you do the Napa to Sonoma next year (July 2010) for Team Chalenge? I “pinky swear” to run it with you since I couldn’t do Vegas with you this year! Looking back over this summer, I am so incredibly grateful for you and am thankful that I went through this the same time you did. You are truly an inspiration and simply hilarious! If things must happen for a reason…I am so blessed that this terrible disease brought such amazing people into my life.
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Brevin Reply:
November 24th, 2009 at 10:56 pm
Napa it is!!!
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Paul says:
December 2nd, 2009 at 12:12 pm
Hi guys, Just sending a message to ask for a bit of advice really. Just wondering what other people did about hitting the gym and exercise after their operations. Still a bit cautious about how far to push my body as i dont want to get a hernia or damage the muscle that is trying to repair. Thanks, Paul
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Brevin Reply:
December 2nd, 2009 at 12:37 pm
Hi Paul.
Once they described to me what a hernia was, I avoided everything with the core for 6 weeks. During those 6 weeks I started slowly with exercises that incorporate no weight, may reps. For example, I did a buttload of shoulder rolls with no weight, then transitioned to curling with 10lb dumbbells and then increased weight. As soon as I felt the pull on my core, I stopped. I think I was overly cautious. On the 7 week mark I started with little baby crunches (2 sets of 10) and slowly worked my way up. I can now do two sets of 150, and although it feels tight at first, I know I’m capable of it.
The best part is that you can feel when you have to stop.
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Paul Reply:
December 2nd, 2009 at 12:57 pm
Thanks for the heads up Brevin, i guess it is just starting out with very little weight and building it up slowly and just listening to your body. What about cardio training? Was that much of a problem or is it a similar case of building up slowly? One other thing i wanted to ask is if anyone has any experience with sports drinks and the like for during and after training. Paul
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Brevin Reply:
December 2nd, 2009 at 1:11 pm
My doc said cardio was ok in small doses, but avoid the inclines. To be honest, my legs were spaghetti after the surgeries so getting them used to the mileage was the biggest obstacle (I didn’t have to break a sweat for my legs to get sore). But you build up endurance over time.
Here’s the best tip I’ve gotten so far, ha: right after training, drink chocolate milk. It’s delicious and happens to have the right nutrients for a recovery drink. During training it’s water and blue Powerade, and I recently discovered “Sport Beans”, but that’s more as a pick-up for the distance.
Hope this helps!
Elise says:
December 16th, 2009 at 6:20 pm
Brevin, I still can’t believe we did a HALF-MARATHON! It was so much fun to see you – we are awesome
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Megan Reply:
December 16th, 2009 at 6:29 pm
Elise and Brevin, you guys will need to post some photos for us to see and celebrate your awesomeness.
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Elise Reply:
December 16th, 2009 at 10:31 pm
Brevin has pestered me for the pictures that I took
I have no idea how to get them on here, so I will upload them and send them to Brevin over the weekend. I finally met Brevin in person at the Crohn’s and Colitis Foundation’s inspirational pasta dinner the night before the half-marathon in Las Vegas. The pasta dinner was sponsored by ConvaTec (makers of the very best ostomy products and the innovative moldable technology)!! Update to all: I have been interviewing with ConvaTec and after 2 1/2 months of interviews I was offered the Territory Manager position for their ostomy division here in Virginia and part of North Carolina!!!! I am so so excited that I get to do this 
I am a ConvaTec rep!! woo hoo!
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Megan says:
December 19th, 2009 at 9:35 am
Hi Elise, CONGRATS on the new position with ConvaTec, that is a great thing to hear for you! Now, what has been decided in your situation? I remember last update I heard from you was that you had CD and not UC and that you may have a perm ileo? Is that the final decision?
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Elise Reply:
December 19th, 2009 at 5:22 pm
Hey Megan, Yep I have a permanent ileostomy, and I am totally fine with it – I am doing great
I am so happy for you and Mark too, isn’t life amazing ?? 
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Elise Reply:
December 19th, 2009 at 5:24 pm
Weren’t we facebook friends Megan?? I can’t remember. Request me if you are on facebook
elisesunshine@yahoo.com
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