Takedown feels like UC again

by on Sunday, May 31, 2009 7:16
This entry is filed under: Coping/Support

Chaz walking after takedown, spirits are high!One of our fellow new jpouchers (1 week old jpouch) is having some issue adjusting to his new jpouch, some of it sounds physical and other of it sounds mental/emotional. I know when I had my takedown I experienced that as well, but I was hoping you could read through his most post on his blog and maybe start a discussion regarding your “reverting back to UC feelings after takedown” experience.  I think Chaz could really use the feedback and discussion on this issue. See Chaz’s blog here: http://mylifewithcrohns.wordpress.com/

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5 Responses to “Takedown feels like UC again”

  1. avatar

    Christine Chavez says:

    June 3rd, 2009 at 12:17 am

    I read some of your blog and I have to say that it made me feel like a reality check hit me, to what my husband is going through it is just so hard to fully understand unless you are in ones shoes, and on top of that I think it is effecting both people involved plus other family members but mainly husband and wife but in two different ways. My husband’s story has been blogged on this site and he went without the stoma and also didn’t have previous issues actually no signs or symptoms just a colonoscopy that led him 3 months later to have a full colectomy with a jpouch. I totally see my husband in your side effects of the surgery, he goes to the bathroom so much and the butt burn is tremendous at times also, I have bought so many different creams, wipes, tucks pads, etc. anything that will help ease the pain. There is a lot to learn and to understand about this surgery and I think one thing my husband needs to understand and come to face with is that he has to change his eating habits due to the surgery and be at ease with the restroom issue of having to go so much at times. I did read that getting out more than staying home helps with not having to go to the bathroom so much, I don’t know how true but for us my husband does tend to go less when out versus home but it also depends on what he has eaten too. There is so much to consider you have taken out a major organ and your body has gone through a major surgery so sometimes you have to put that into perspective when times are rough. Living this has taught me so much as the other person helping in the healing process and it is not easy on this end neither, I get emotional seeing him in pain and I wish I had a solution but I don’t and to know this might not ever go away in reality at times it is good and other times it might be this way all I can do is either stay out of his way or be there to listen and help in whatever ways possible. I have been stressed both physically and emotionally because Ricardo tells me when he is down or worried, mood swings, seeing him down, sometimes we have to stop what we are doing so we can go home to use the restroom then depending on the pain sometimes he just wants to lay there and other times he needs to walk around, our sex life has taken a step back, hearing him moan and groan throughout the night worries me, reminding him to watch what he eats when he is not in the mood to be told is frustrating for the both of us, BUT we are trying and sticking together and we tell each other it could be worse or our diagnosis could of been worse so thank God and pray it gets better and we will keep on trying and doing what we can together to make it not so bad. Please stay strong and positive know your family is behind you 110% and although there might not be a going away phase fully it will get better and to know that you are free of the UC should be a relief in itself although today may not be a day to be so positive tomorrow can be so keep hope and faith and keep in touch with us and let us know your progression as we understand and care.

    Christine and Ricardo Chavez

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    Chaz & Lori Burton Reply:

    Thank you Christine for sharing your story. It sounds like your husband and I are going through very similar things. The eating is a real pain for me. I like to eat anything and everything. But when I do that, I pay the price. Yesterday I ate really good, and I had a great day, the best so far, no butt burn, about 10 times to the bathroom, I felt like I was emptying my pouch almost every time. It was great. Today on the other hand, not so good. Between lunch and dinner I had 5 hot dogs, chips, chocolate chip cookie dough, cheese curds, yogurt, mac-n-cheese, soda, and some cookies. Tonight I am paying the price for it. I have not had very good bathroom times tonight. My butt burn is returning, the butt feels all puckered up tonight and restless. I hate to admit it, but I know what I eat effects my output. It’s tough to reteach yourself to eat better, but sooner or later I am going to get tired of the pain and just give into the better eating plan.
    Hang in there guys. Keep learning how to live with the new pouch and be patient, God knows I have been trying. It will get better. Chaz

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  2. avatar

    Elise says:

    June 3rd, 2009 at 8:15 pm

    I hope you start doing much better Chaz :) I haven’t had my surgeries yet – June 23rd for part one for me, but it sounds like me on prednisone, I just want to eat everything and I pay for it, hopefully you will find that happy place and it will all come together for you. I honestly hope I don’t have much of an appetite after both my surgeries, I don’t want to be battling cravings and bum issues too. Hang in there :)

    Elise

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    Chaz & Lori Burton Reply:

    Hey Elise, I am doing better, that is a good thing. Every day I see improvement somewhere. :-) After my first surgery I didn’t eat for a long time. Your stomach will shrink a lot. I think I went almost a week before my stomach started working again. I think it was about three or four weeks until I was back to a ‘normal’ eating pattern. I wasn’t that lucky with the second surgery. Your stomach is not down as long as the first. I was eating solids two days after the surgery and able to eat whatever within the first week (don’t recommend that you do.) I think the second surgery is harder to control your food intake. Just a little heads up for you to prepare for. Good luck on June 23rd with the surgery, keep us posted.
    Chaz

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  3. avatar

    Stepanie W. Standaert says:

    October 2nd, 2014 at 8:36 am

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    Please let me know if you run into anything. I truly enjoy reading your blog and I look forward to your new updates.

    [Reply]

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