My Story of hope

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New Member

Date Joined Feb 2009
Total Posts : 1
   Posted 2/24/2009 5:14 AM (GMT -6)   
I was diagnosed with UC in Nov 2004,I was taking 6 Asacol a day plus Colifoam, and Asacol suppositories I had no real idea what it is until August of 2006, It started after a vacation to Florida, I started to take more and more bathroom breaks, did think at one point to put a TV in there as I spent so much time there, I had no choice but to give up work, then I started to loose my appetite, towards the end I wasn't eating anything , but the bathroom trips were still as frequent, Then I noticed that when I lay down to go to sleep it hurt on all my pressure points, and still the bathroom trips were as frequent as ever,it was like I was dying from the inside out, I even though of committing suicide it got that bad,
Then I got admitted to hospital just before my birthday in Dec 06 what a result for me, they started me on cortisone steroids for 2 weeks, during those 2 weeks I had to have 2 units of blood because I had lost so much as well as pentas suppositories as well as the camera to see what was going on, all looked well, On the day I was supposed to leave they then gave me Iron infusion as well, not so good, straight after that I went downhill again, I don't blame the infusion at all 
just think it hadn't cleared as much as we all hoped for.
So I stayed in hospital then had another camera, the results not so good, they told me I needed surgery, so on Dec 22 I went for my operation to have my colon removed. after a 10.5 hrs keyhole it was a success, I just feel sorry for my wife, waiting for that amount of time, which I apologies for on a regular basis
After about a week I finally started to be compusmentus, I'd lost around 5 stone in weight which was no biggy as I was 19 stone, but the worst thing for me was having to learn to walk again, very weird
I was fitted with a bag, but the best way to get over that is to remember that If that wasn't there Id be dead, plain and simple, when I first saw the operation site to be honest I did faint, but then they realized that I did need another 3 units of blood, so that's 5 in total, everything was going great, then I decided I need another challenge so I got MRSA, anyway I finally left hospital 5 Jan 07, and before you ask no I'm not suing the hospital at all, they were great , without the nurses, doctors, and even the tea lady I wouldn't be here today.
On April 26 2007 I went back into hospital for the reversal, I  went for the straight reversal, as I dint want to take any risk with my sex life, So I still have UC but only in the Anus, but still on medications to controll this. The keyhole operation lasted 4.5 hrs again feel so sorry for my wife, putting her through this.
After the operation boy what a change, though UC was bad, must have been going about 20 times a day for about the first 3 days, but it was just water, at first I'd wish I'd stayed with the bag, but it soon quietend down.
I now keep a diary next to my bed of how many time I goto to the toilet its between 6 to 8 a day, and now also I can hold it, unlike when I was suffering with UC, its the best thing I had done.
I do watch what I eat, but I do eat pretty much anything, and I am still taking 4 pentasa tabs and 3 Imodium and sometime I also use colifoam, but I feel great and look great, but to be honest if it wasn't for my wife being by my side day in and day out I just don't know how I would have coped, she is a rock.     
Hope this can be of help and if you need any info, please feel free to contact me, but your not on your own, listen to what the doctor says, the camera doesnt really hurt at all

Regular Member

Date Joined Dec 2006
Total Posts : 251
   Posted 2/24/2009 6:02 AM (GMT -6)   
Thanks for posting. I did not know that you could keep your anus? So they took the rest of the infected area out and left the anus? So the j-pouch is not the only thing you can do? Now will the UC from your anus ever move back into the other part of your intestines?
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(

Forum Moderator

Date Joined Feb 2006
Total Posts : 5698
   Posted 2/24/2009 8:05 AM (GMT -6)   
The anus is not removed for jpouch surgery. The colon and rectum (all but 1cm) are removed. If the anus was removed the sphincter would go with it which would be disasterous. I have never heard of UC remaining in the anus, I think what he is referring to is actually cuffitis, UC left in the rectal cuff. Many of us, myself included, had our rectal cuff stripped so all remaining UC is gone.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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