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Anyone here have an ileostomy or j-pouch?

Discussion in 'Off Topic' started by xd45acp, Sep 29, 2012.

  1. xd45acp

    xd45acp molalla Active Member

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    If you do, how do you carry? What was the reasoning for the ileo/pouch? I myself have Ulcerative Colitis, for those out there who don't know: UC is a disease that affects the colon, which many people do not know is the large intestine. When I say I have UC people ask how much I drink, it's not a disease you get from drinking alcohol. Doctors do not know what causes it, but suspect it is genetic, more so with Caucasian decent. It usually shows its self in your mid 20's, but can happen at anytime. I started having symptoms Nov.'11 and went down hill fast. I spent 2 weeks in the hospital and lost 30 lbs./ couldn't eat and was constantly passing blood. Had a colonoscopy in Dec. '11 and was diagnosed with UC. I was told there was no cure, but with medication the symptoms would be manageable. I started Asacol, it didn't work. I tried various diets, they didn't work. I kept progressing to the point that in April '12 I started Remicade infusions which is administered by iv over 4-5 hours and costs $10,000 for the first injection, and $6,000 for subsequent injections. I failed Remicade within 3 injections. After Remicade the only option I had was surgical removal of my colon in june '12. I chose to have a J-pouch. It is a 2-3 part surgery With the first being removal, creation of the pouch, and creation of ileo stoma. Since June '12 I have had a bag on my beltline with my small intestine sticking out. My 2nd surgery is on monday Oct. 1st "the takedown" and hernia repair. So anyone have any advise/ experience to share?
     
  2. KONE KILLER

    KONE KILLER WASHOUGAL, WA Active Member

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    Dang!
    My wife went through a severe Crohns flare up back in '09-'10. She started going in to the hospital in December 09 with bleeding, and mad pains in the stomach. They sent her home after a ct scan, some drugs, etc.
    Come end of January '10, she was not doing good. She was a total space head, and would hurt anytime she would eat something.
    They gave her a bit of the run around, and got her admited into the hospital and she got a GI doctor. Turns out he is one of the best in the NW, and had it pinned down right away. She wound up getting several colonoscopy exams to see how much damage was done to the intestine. She was still in pain, and passing the blood, so they kept her in the hospital until the blood stopped. She wound up having a pair of blood infusion/transfusions to get everything back up to snuff. She was in the hospital until about the end of March before the pain and blood was at a safe level.
    They tried Asacol for her as well with no luck, and then Remicade. Remicade has worked well since! We are super lucky she is doing well now since she is due with our first child in November.

    If you dont mind me asking who is your GI doctor? If you would like, I can find out my wifes for you. He was a good guy, but for the life of me I cant remember his name. Told me one night I was in bad shape and needed sleep. Said he didnt want to see me until at least 10am that next morning and after I ate something good.
     
  3. xd45acp

    xd45acp molalla Active Member

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    Good to hear meds are working for her now. My Gi specialist is Dr. Chang, and my surgeon is Dr. Lee out of Beaverton. Congrats on the up coming child! I had my second surgery yesterday. I am sore and couldn't sleep last night from mucle spasms. I am a little scared as I haven't had a Bm yet. Just got to keep walking aroud the hospital.
     
  4. xd45acp

    xd45acp molalla Active Member

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    Out of surgery walking around, the real pain is kicking in now. still cant carry. Compared to the first surgery this has been easy.
     
  5. KONE KILLER

    KONE KILLER WASHOUGAL, WA Active Member

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    Dang bud! Take it easy and get well soon!!!
    Her gi guy is dr. Jeff Olson out of the Sunnyside Kaiser.
    If your normal guy is ever out, ask to see him. He is a good guy and a great Dr.!!
     
  6. Sgt Nambu

    Sgt Nambu Oregon Bronze Supporter Bronze Supporter

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    Gosh! I have no advice or experience for you but I'd like to offer my best wishes and sympathy.
     
  7. keystir

    keystir Hillsboro, OR Active Member

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    shoulder holster/holster shirt or a fanny pack. Good luck in your endeavors!
     
  8. Jasonsan

    Jasonsan Sandy, OR New Member

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    Not much advice but lots of well wishes here! My little brother went through it when we were younger and his story is very much like yours above. This was in the mid 90s and although he is pretty healthy now he is still on meds and has to watch what he eats and drinks. Seems like the worst part of it for him was being in high school when it was going on and all the tourment that went with all the accidents and then the bag..... Hope everything goes well and that you get back to close to normal as possible as soon as possible.
     
  9. xd45acp

    xd45acp molalla Active Member

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    Thanks for the responses, and well wishes. I am hoping to be moving around better within' a week or two. I have a remora holster that has been working for me with loose pants and shorts. Thanks again, if anyone has any questions or comments let me know.