UC to J-Pouch Story

Photos: Rob B.

 Rob B. – A colon cancer survivor, recently has had his jpouch reversed to a permanent ostomy, plus hernia repair.

Rob Headed into Pre-Surgery Testing

Rob is headed inot surgery on Aug 8, 2008 for removal of jpouch and permanent ileostomy. His story is different than Mark & Carter’s because he had colon cancer many years ago, and it damaged his rectum area, leaving him with the option of a perm ileo to simply get his life back.  Below is an excerpt from Rob, and we’ll be adding photos and text of his journey as it happens.   Be sure to send him your support, he has a long journey of physical and emotional healing ahead!

 

Rob’s Story Explained:  “My Colon was damaged due to radiation I received 17 years ago but I’ve been on a medication called lomotil.  It controls B/M’s but unfortunately not all the time. I have had my shear of accidents so I can relate to Marks story when he was up on the lift and had an accident.  You see my problem is also with my Sphincter (the anal muscle that holds everything up and in). Because of the cancer they had to removed a large portion so I have no control of any B/M’s. I can’t even feel when I’m having one. I’ve been surviving because of the medication. It hasn’t been pleasant. I need my life back so I have to go for the permanent ostomy.”

8-22-08 UPDATE:   8 days in the hospital was longer than I expected but I’m healing up pretty well. I have

Rob Hernia Repair And permanent Colostomy

Rob Hernia Repair And permanent Colostomy

about  15 staples down my belly, a permanent Colostomy  which is called an End-Colostomy a hernia repair and my butt sutured up.  I had the one complication which was my hernia repair. I have a staph infection. My Stoma is now on the right side. Man what a difference there is from a temporary colostomy to a permanent one (Loop to End colostomy).  There’s actually hardly any smell at all. The B/M’s are a lot fewer and the stoma is a lot smaller. I guess the size would depend on the size person you are.
O. K now I’ll tell you about the pain. We all know that with any type of surgery there is going to be some level of discomfort and pain. I have to say that it wasn’t pleasant at all but it wasn’t as bad as I thought it would be. And I actually had 4 surgeries at the same time. If your in pain and the Doctor is giving you narcotics then they just have to give you a combination that works. You have to speak up or have someone speak up for you. Don’t go through any unnecessary pain. I’m taking 4 to 6 Oxycodones  a day because my butt stings and the staples hurt  but only if I don’t use the pain med’s. There’s  one thing I want to be perfectly honest about.  I’m not going to lye and say the whole bag thing doesn’t bother me because it does but only to an extent. My quality of life before and after are like night and day. Life feels so great and it’s only been less then 2 weeks.
I just want to say to anyone  in pain and the pain is holding you back from doing whatever you love doing  just hang in there and when the time is right to take that step and get the End-Colostomy you’ll know it. I took all the vanity and the self image stuff and thought to my self what was really important.  I just wish I would have realized this sooner and got my priorities straight.
 
This picture is of my hernia repair and my stoma.The stoma is less than an inch in diameter. The staples start about an inch above my navel and run all the way down. I can’t sit yet because the staples dig but there coming out Monday.

8-28-08 UPDATE:  
It’s been almost three weeks since my surgery and I’m healing up and feeling good. In this picture you can

After Staples were removed

After Staples were removed

see where they removed some of the staples early to relieve the infection I got in the hospital. Two weeks ago it looked twice as bad. I have to pack it with a wet gauze and cover it with a dry one. It doesn’t hurt at all even though it looks like it would. I just got out of the shower and I always leave the bag off so the water can run in and out of the wafer. The wafer is the large beige patch you see around the stoma.
I’m just beat all the time. I guess it’s because my body is still healing and people tell me it takes months for the anastigia(spelling) to completely leave your body. I’m not sure how true that is but I’ve read it all over the place. One more thing, I lost 15 lbs in the hospital and so far put back 4. I guess 15 shows a lot because I’m only 5′ – 6″.

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15 Responses to “Photos: Rob B.”

  1. Mary Ellen Santoro said

    Rob,

    I wish you the best of luck and hope that you get your like back quickly.

  2. Rob said

    Thx so much Mary Ellen. I have so many people praying for me it’s unreal. This will be my 7th surgery in 2 years and this one should be my last.

    ROB

  3. Megan said

    Hey Rob,

    Glad you are out of surgery and now recovering well. You’ve had a long journey and deserve peace. Could you explain why you have a colostomy and not an ileostomy like Mark? I don’t know much about colon cancer, but when they removed your colon, did they only take part of the colon and that is why you now have a colostomy vs. Mark’s temp ileostomy?

    Megan

  4. Rob said

    Hi Megan, I tried everything before going for the permanent colostomy. In and out of the hospital 6 times and still in pain all the time. The butt burn, uncontrolled b/ms. It was just such a awful way to live. In fact it wasn’t living but just surviving. With the 7th surgery I had my colon removed and had the end-colostomy done. What a great feeling not to be in pain. As soon as I heal up I’ll have my life back. If I choose to later on I can irrigate it in the morning which takes about 30 to 40 minutes and then I don’t have to wear a bag at all for 24 to 48 hours. You put a patch over the stoma and go. Medical journals state that most people can take a year to two years to adjust to their body image but I took to it right away. No more limping around not knowing how I’m going to be feeling the next day. I look at this as a real blessing.

    Rob

  5. Tina said

    Your story made tears come down my eyes. In Nov I was rushed into the hospital for mal-nutrition. I did not want to get the bag that would eventually save my life. My parents including Dr.’s didn’t think I was going to make it. I didn’t want to die. After a week of being on a PIC line I was strong enough to have the surgery. I remember thinking to myself I’ll never be able to wear a bikini again or be desirable to anyone. But I knew if I wanted to live any sort of a normal life again this would be it. But now I know life can be so much better. I still hate having my bag but its what saved my life (including dr’s and my will to live) we have a very love hate relationship. If I didn’t get it I would have withered away to nothing. I may not have cancer but I also had the same problem with rectal dysfunction due to my Chrons. Another reason I should of gotten it done much sooner was the fact that I had about 7 abscesses in my back caused from fistulas. They are still not gone but are slowly disappearing. I have a temporary bag and I Guess with my next check up they will tell me if I can get a reversal or if I have to keep it. Even if I want a flat tummy, the pain is not worth it and if I get stuck with a permanent ostomy I wont be sorry. Thank you for your story. It makes people like me feel better knowing someone went through the same.

  6. munchkin said

    would any one have any idea, when you are a colostomate, and suffer from chronic pain, and take narcotic pain meds daily, how in the heck to keep your stools from getting so hard, and binding up? I have got to have my pain meds, but the dr says I am costipating myself. For one good thing the pills do, it causes me yet another problem. Man, these laxitives cramp me up bad. Anyone have any suggestions

    • Rob B. said

      hello ! all i can think of is to eat a lot of vegies. Steamed Broccoli would be the best. And stay away from rice.

  7. phong said

    Hi rob you are brave you went throught all that. After my friends pass away last month now I am going to get myself check too at ages 40.I just wanna know how long did you had the colon cancer before you know you have it??
    Phong.

    • Rob B. said

      Hi Phong, i cought the cancer in its early stage and still had a long road to get to where i am now. If this runs in your family i know you should be checked every other year. I’m very sorry to hear about your friend.

  8. Hi Rob, just came across your story and have to say I think your positive attitude plays a great role in your recovery. I am a stage IV colon cancer patient who landed in the hospital with a UT infection which then identified the cancer I never knew I had. If that had not occured I would be dead now. Going through chemo now nearly two years and while sick every other week, I have a life the other weeks… I am grateful. I wish you a good life, a long life and an excellent recovery. It is amazing what we can do when we put our minds to it. Appreciate the info, I have a paraumbilical hernia as the result of surgery and often wonder if it is a danger… doc says no. So for now, I live each day as if it were my last, life is good. Best of luck to you. My web blog is Positive Pursuits should you care to visit. 🙂

    • Rob B. said

      Hi Deborah, I think we need to try to have a positive attitude in everything we do. Ive had a hernia for years with no problems but would liek to get it taken care of soon. I hope your doing well and living a happy life

  9. […] from: ucstory.wordpress.com No related posts found! Posted in Family Health Care | Tagged Hernia Causes, Hernia […]

  10. Orbin said

    MY PRAYERS TO YOU. I HAD A COLOSTOMY BAG FOR OVER A YEAR. NO INSURANCE SO WHEN I GOT IT THEY REVERSED IT. IM STILL THANKING GOD FOR THE WILL DURING AND NOW AFTER. I STRUGGLE EVERY DAY SOMETIMES I DONT KNOW WHY. MENTALLY I HAVE A WAY TO GO. ONLY WAY I MADE IT THIS FAR AND FOWARD IS JESUS AND THE THINGS AND PEOPLE HE PUT IN MY LIFE. GOD BLESS YOU WITH THE WILL GRACE, LOVE, STRENGTH OF HIM !

  11. robby said

    hi Orbin, thank you. going through so much changes a person. I think i’m a better one for all i’ve been through.
    take care of yourself

    Robby

  12. Orbin said

    HI ROBBY , GOOD TO HEAR FROM YOU. I PRAY FOR YOUR STRENGTH COURAGE AND FAITH AND HAPPINESS FOR EVERYDAY. ! SAY ROBBY YOU WATCH FOOTBALL . IM A EAGLES FAN. I WATCHED THAT GAME WITH PEYTON AND ROMO WOW THEY BOTH PLAYED THE WHOLE GAME.NEVER TOOK A BREAK THE WHOLE GAME. PEYTON IS A MASTER AT THE GAME. TO BAD THE COLTS DIDNT KEEP HIM. LUCK IS DOING GOOD THOUGH FOR THE COLTS. YOU KNOW WHAT, NOT MANY THOUGHT PEYTON WOULD PLAY AGAIN FOR SURE NOT LIKE HE IS NOW HUH ?
    KEEP UP GOOD THOUGHTS. MANY PEOPLE LOVE YOU. FOR SURE JESUS LOVES US. HOPE YOUR TEAM WINS THIS WEEK. …..

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