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″.

15 Responses to “Photos: Rob B.”

  1. avatar

    Mary Ellen Santoro says:

    August 6th, 2008 at 6:31 pm

    Rob,

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

    [Reply]

  2. avatar

    Rob says:

    August 7th, 2008 at 2:34 am

    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

    [Reply]

  3. avatar

    Megan says:

    August 29th, 2008 at 8:02 am

    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

    [Reply]

  4. avatar

    Rob says:

    August 30th, 2008 at 5:12 am

    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

    [Reply]

  5. avatar

    Tina says:

    December 18th, 2008 at 2:49 am

    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.

    [Reply]

  6. avatar

    Jeane says:

    January 8th, 2009 at 10:11 pm

    Hi rob,
    Best of luck with your recovery. Did you h ave drohns or UC? Glad to hear you are healthy and recovering.

    [Reply]

  7. avatar

    Rob says:

    January 13th, 2009 at 6:39 am

    Hi Tina and Jeane, It’s all about your quality of life. We all want to be the best we can be and how can that happen when your always in pain. I look at it this way… if a person dosen’t want to date me because of my colostomy then what kind of person is that anyway. It’s been 5 months since my perm-colostomy and I couldn’t be more happy. Yeah my body will never look the same and I was into working out all the time but life goes on and so much better than before. I still hit the gym but not like I use to. Iv’e learned to see whats really important in life and it’s not what others think about how I look naked. What a life that would be if that was my priority. I had crohns and cancer since I was in my teens and never thought I woudl end up with a colostomy but I did and Life goes on..just a whole lot better.

    [Reply]

  8. avatar

    Greg Ghia says:

    November 24th, 2009 at 9:29 am

    Rob,

    Read your story and liked your attitude. How are you doing these days, physically and mentally?

    [Reply]

    avatar

    Rob B Reply:

    Hi Greg, I’m doing jusy fine. Thanks for asking. You know sometimes life in general is a stugle but we have to make the best of things. Having good people around me helps a lot. Take care and Have a great year.

    Robert

    [Reply]

  9. avatar

    Amy says:

    July 3rd, 2010 at 3:23 pm

    Thanks so much for your brave story and pictures. My son has a temporary colostomy which is going to be reversed in a week. I was looking for info on what to expect postoperatively when I came upon your story. I am awed by your strength of spirit and willingness to share such an intimate and painful experience. It give me strength to know that my son could rebound and be as ok as you. Hugs to you, Amy

    [Reply]

    avatar

    Rob B Reply:

    Hi Amy, sorry it took so long to get back with you. Hope your son is back on his feet and ready for anything. A lot of my strength came from my family I must say. I’m so glad I could help you my friend. Take care and happy new year, Robert

    [Reply]

  10. avatar

    Denese Worsley says:

    February 2nd, 2011 at 10:45 am

    I’m not sure why but this site is loading incredibly slow for me. Is anyone else having this issue or is it a issue on my end? I’ll check back later and see if the problem still exists.

    [Reply]

  11. avatar

    Betty says:

    March 26th, 2011 at 7:08 pm

    When I was a 33 year old single mother of three young children, I was diagnosed with a rare cancer. Vagnial and colon cancer was such a shock to have to cope with. After multiple surgies and a few years of tremendous pain, I seem to be doing much better. Part of my colon and rectal area had been removed. I had a temp ileostomy for 7 months. I have a such a positive personality and high outlook in life. At times i must say those wonderful attributes were challenged leaving me feeling defeated and alone. I am now 41 years old and I find that my life since has improved but I still feel as though I am trapped in the bathroom. I am a social worker, working with families in need. I have been in very desperate situations and most embarrassing moments. I have been very fortunate to be around so many caring and understanding people. I still lose control with my bowels and i often get unrinary track infections because of the accidents i have. I am now at a point in my life where I am seriously considering a permanent procedure. I want to walk down the mall and shop without staying close to the bathroom area. I want to attend the family functions rather then view the pictures of my family celebrations. I have missed out on so much. I love to swim with the kids, is it still possible for me to go into a swimming pool? what is the proceedure like? is it the same as the temp? I found the the temp often let go and it was not sticking that well. I had frequent infections, my skin became irritated and inflamed. Is that something I wil have to expect with a permanent ileostomy? I read through the stories and was so happy to FINALLY come across people who know and understand what i am going through. I have spent several days and nights praying about this and I do feel that this will give me my life back. Dating scares me, maybe I ought to give up on that whole thought of happily ever after. I’m smiling as i write that…its not as important to me as it is getting my life back. thank you so very much for your story. I look forward to hearing back from you.

    [Reply]

  12. avatar

    Rob B says:

    March 27th, 2011 at 6:41 am

    Hi Betty, I know what your goign through. I think most peopel with a Colostomy do. I think you have to find a surgeon you trust 100% and together figure out what’s best for you. To be honest with you, life is so much beter after havin my Colostomy surgery. It was a livign hell before. Now I go to the gym, run, and yes….”swim” but is did take a while until Ifelt comfortable doing these things. It took me a good year before I felt comfortable with my colostomy but now when I look back at how my life was befor eI can’t help but think how much better it is now. Last year the fair came to town and my 9 year old nephew asked me over and over again to ride the roller-costar with him. Before my surgery I wouldn’t dear think about it. This time I rode it twice. Beth….it;s so nice to do things and not worry about having an accident. As for the skin issues, once you have a colostomy you always have to take care of the skin around the stoma. Problems with the skin are very common but in my case, I had a rash once in the three years I have had my colostomy. Hope this helped you in some way, Take care, Rob

    [Reply]

  13. avatar

    Zachariah Zorn says:

    October 13th, 2013 at 2:22 pm

    Hey Rob I hope all is going well for you, I’ve had an Illiostomy for 14 years next week. I have Crohn’s disease and have had many surgeries. I had the temporary Illiostomy, which was horrible. I can’t even begin to explain how horrible that was… well you know. I’m 29 and just wanted to say I hope you don’t let this thing drag you down, there is nothing in the world you can’t do. and now you’ve always got a weapon. because no one wants to mess with the crazy dude, but not even the crazy dude will mess with the guy with shit on a stick. (or bag however you want to say it) I’ve actually thrown mine at a guys car when he cut me off on the interstate one time, just grabbed another bag from my glove box and snapped it on, continued on down the road.
    I’m not going to get to in depth here, because life before my ostomy wasn’t a life it was exsisting. I hope you’ve gotten over that fear I had of telling people about it. 14 years and I’ve never had a bad reaction from one woman. though I’ve learned to let it just be part of me, heck it’s in my dreams now. if you ever need to talk which I know you’ve had yours for a few years at this point, but feel free to contact me on facebook I’m the only zachariah Zorn in the country.
    Oh BTW I wanted to point out that they removed your rectum and sphincter, they can’t close the anus off without. Also around the 5 year mark you should start to notice better absorption of your food.. well you have a Colostomy so you might not have a problem with it anyways, just the placement looks like where my illiostomy is placed well best of luck, and always remember You’re carrying a loaded weapon all the time now.. don’t be afraid to use it. I’ve gotten out of tickets and gotten through court in mins instead hours because I’ve been willing to say hey in 10 mins I’m gonna have a mess in your court room (even if I wasn’t going to)

    [Reply]

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