this jpouch stuff is tough.

I have had a lot of people ask me how I’m feeling since my reversal surgery 8 weeks ago.

I’m not going to lie, I thought I would be feeling much better than what I really do.

I feel like I’m back to square one, trying my hardest to muster all the energy I can to have a normal life again. I found a new job in a new city, found a new apartment, moved, ended a seriously stressful relationship and am hoping that my life continues to grow more positively both emotionally and physically as the days press on.

I start my new job on Wednesday in Cleveland and I am very excited, but very nervous. I am back to constantly worrying about my new colon, almost as much as I worried about my old one. Is that just a habit I’m going to eventually break or is that how my life will be with a jpouch?

I find that I’m asking myself questions like that all of the time. I’m quite open about my situation and what has happened to me, so telling new friends or co-workers what I’ve been through isn’t the core stressor for me. It’s what can I eat? How will I feel after a full day of real work? How will my body adjust to my new schedule? Will I be going to the bathroom a lot? Will people notice I’m going to the bathroom a lot? The list could go on forever.

But I’m not trying to sit and be negative, I’m trying to be realistic. This jpouch stuff is tough. I’m back to planning out meals and constantly trying to eat the right foods so that my body doesn’t freak itself out. I’m up a lot at night and still don’t feel like myself. I do feel better, just not myself. I haven’t felt like myself in..uhhhh..a really long time.

I was thinking as I was walking up to bed last night, this disease and this process has taken over 2 years of my life from me. Not just any kind of life, a life that I loved and worked hard at, a life that I literally worked myself to death over. So much has changed for me in 2 years, my goals and dreams have changed, my passions, my friends, my expectations of myself and others, it all is different now. Most days I am thankful that this happened and that my life changed, I’m a big believer in everything happens for a reason, but there are times now when I have pain or fatigue again and it’s like, “really?”

It’s definitely an uphill battle, a long, treacherous path that I’ve been walking for seemingly forever. I don’t like to scare those that are about to have their reversal surgery or are planning on having one someday. The one thing that I try to remind myself  of is the stress that I have endured and put on myself since being put back together. Stress that I would not recommend anyone going through what I am put themselves through.

I was in a situation that was making me extremely unhappy, where I felt like I put my heart and soul into something I thought was forever, when in reality all of that stress and effort was making me more sick and preventing me from recovering like I should. I was giving something to someone that I should have been giving myself, because in the end it turned out to be underappreciated and it caused me pain. In reality, I’m so disappointed in myself before anyone else. I should have never cried for any reason other than the pain my disease was causing me. I should have never stressed over anything other than my own fears for what was happening to my own body. I should have put myself first and everything else second to last. But I didn’t and that is no one’s fault but my own. As a 25 year old woman who has been through quite a bit, I should have known.

I woke up and realized that my happiness and well being was more important than the force I was giving my energy to. I realized that the only person that can make me happy, is me. Never again will I allow my expectations to fall. I’ve had too much pain, endured too much suffering, it’s time for me to come out a stronger, more happy and fulfilled person for it.

So that’s what I’m doing and am going to do. I’m going to go into that new job and life with the same strong-willed focus that I had when I had walking into my first hospital stay, my first blood transfusion, my first remicade treatment, my first Humira shot, my first surgery, my second surgery, my last surgery and every single, horrible thing else in between. It’s time for me.

But really….how are you feeling since having a jpouch, any advice, suggestions?

Well, I am still going to the bathroom quite a bit, I’d say at the most about 12-15 times a day.
DO NOT put yourself under any stress going into the reversal surgery. Surround yourself with positive people and think good thoughts.
I am very tired a lot, so make sure you plan on resting and doing nothing for a good 3 months.
There is still some pain going to the bathroom, light cramping and I do get a little nausea from time to time.
I have trouble sleeping, but I’m not sure if that’s because my sleeping schedule has been so messed up since being sick. Sooo, that’s 2 full years of a horrible sleep schedule.
You can not eat whatever you want. Ice cream, yogurt, peanut butter sandwiches, turkey sandwiches, pasta, mac and cheese, crackers. Little kid food. Eat like a little kid. Even the portion sizes.
Invest in a heating pad. To sit on.
Don’t neglect your G2!
Don’t have high expectations of feeling better fast. This is a process. You just had a new inside built. You may feel like its frustrating going to the bathroom a lot, but don’t let that get you worked up, because then you’ll just go to the bathroom 8 more times.
REST.
SLEEP.
EAT SMART.

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3 thoughts on “this jpouch stuff is tough.

  1. Don’t beat yourself up for not putting yourself first and enduring more stress that necessary during your surgery. I can very much relate to what you are feeling. We learn from our past. You are also making many changes at once around the time your surgery which may be stressful as well (new apt, new job) so don’t get frustrated if you feel so tired or overwhelmed at first. The positive is you are now surrounding yourself with positive people to support you!! Healing is a long process- it took me a while to heal from my bowel resection. Don’t feel like you are regressing if some “old symptoms return” your body has to adjust to new parts and food will probably go through you quicker now. One day at a time! Stay positive! Wishing you happiness and health!! 🙂

  2. Thanks so much for your post. I’m 5 weeks on after reversal and seem to be struggling with the same issues as you. I just don’t seem to be having the same success as most people i read about at this stage of recovery. Looking ahead to your more resent posts it makes me wonder if i might also have developed pouchitis. I’m still very much trying to figure out all these new sensations and signals though.

    • Hi AG!
      Sorry to hear about your issues. I understand you not feeling like you are par with others who have jpouches. I’ve learned that comparing my recovery to that of others never works out, haha! Make sure if you are seeing a doctor for pouchitis, that you have a scope done to confirm that diagnosis. It turns out that I did not have pouchitis, but instead “cuffitis,” which is the remainder of my uc in the rectal mucosa. It should burn itself out, but I am on suppositories and nausea medicine at the moment. Luckily, I do not have pouchitis and that was confirmed through a scope I had done. I am now on correct treatment and my diet has been switched to reflect my recovery! Let me know if you have any questions!

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