Surgery Stories & Photos

Over the past year we’ve been able to share with you the many diverse stories from individuals in transition from living with a colon to living without a colon. All the reasons vary for why people have had their colon removed, they include ulcerative colitis, toxic megacolon, colon cancer, and other “fun” diseases that hinder bowel function. If you take some time to look over the “Quickie Profiles” below you’ll likely find someone similar to you in age, country, ethnicity, gender, sexual orientation, religion, disease, surgery complications, outcomes and all the other reasons that help us not feel so alone during this unique experience in life. And of course, we welcome you to contact us if you’d like to share your story and/or become a blogger on the site. Friends and family are welcome and encouraged to read and participate in comments. Without the support from our loved ones, we wouldn’t be able to heal!

Mark HiltonMark

Photos Mark 1: Colectomy
Photos Mark 2: ileostomy
Photos Mark 3: J-pouch
Photos Mark: 9 month update
Photos Mark: 15 month update
Mark’s Quickie Profile:

  • Male
  • 32 years old
  • Had Ulcerative Colitis for 7 years.
  • Had 2 step lapro surgery in 2007.
  • Living with j-pouch.
  • Lives in Georgia, USA
  • Unique to Mark’s photos is that Megan (spouse) documented his surgery and recovery, so you’ll get his surgery experience with two perspectives, his experience and her experience as the loved one. This is a great story to read for those people visiting the site who provide support to someone dealing with the surgery/recovery.

catarinaCatarina

Photo Story: Catarina
Catrina’s Quickie Profile:

  • Female
  • In her 20s
  • Had Ulcerative Colitis
  • Had lapro surgery.
  • Living with j-pouch.
  • Lives in Portugal

CarterCarter

Photo Story: Carter

Carter’s Quickie Profile:

  • Male
  • 22 years old
  • Had Ulcerative Colitis.
  • Had 2 step open surgery.
  • Living with j-pouch.
  • Lives on the East Coast, USA

rob

Rob 

Photo Story: Rob
Rob’s Quickie Profile:

  • Male
  • 30s
  • Had Colon Cancer.
  • Living with perm ileo.
  • Lives on the East Coast, USA.

stephanieStephanie

Photo Story: Stephanie

Steph’s Quickie Profile:

  • Female
  • Early 20s
  • Had Ulcerative Colitis
  • Is living with a jpouch
  • Lives in the midwest, USA.

jenelleJenelle

Story: Jenelle
Jenelle’s Quickie Profile:

  • Female
  • Late 20s
  • Had UC
  • Living with temp ileo
  • Lives in Canada.

casey-hammock Casey

Photos and Story: Casey
Casey’s “Quickie Profile”

  • 20 years old
  • Female
  • Lives in Florida
  • Diagnosed with UC in 2007
  • Colectomy in 2008

25 Responses to “Surgery Stories & Photos”

  1. avatar

    Michele says:

    July 15th, 2009 at 2:28 pm

    Everyone’s so young here. I am 47 and meeting with a surgeon next month, after three years of dealing with UC. I’ve tried every medical intervention, including more than two years on Remicade but nothing is getting me all the way into remission. Your stories are all helping me a great deal seeing how you are all doing well and learning what your hospitalizations and all you’ve gone through have been. I do wish there were some older folk to read about though — I am wondering how quickly an older person “bounces back!” Any over 40s out there who have had the surgery and want to communicate with me?

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    Mark Reply:

    IBD like UC (which is why many of us had the surgery) likes to get us sick when we are young! Although there are many wonderful adults living healthy and well with their jpouches at your age. Surgery and recovery time seems to vary for everyone regardless of age, etc…You really should go and post over at http://www.jpouch.org – the discussion there has many readers and some like Jan Dollar, Kathy Smith that are around your age. And if you are feeling up to it sharing your story, we’d love to have you share your story on the website so that we can represent all ages!

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    Michele Reply:

    Thanks Mark, I’ll check out that site and I’ll think about sharing my story here (when there’s one to share).
    Michele

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    Mark Reply:

    Michelle, You might want to read through Brevin’s posts – starting from the bottom up with his first post titled “I think it’s time for surgery” http://www.jpouch.net/author/brevin/page/2/ He posted all the way through trying to decide on surgery, and his journey through decision making, then surgery prep, then surgery. Now he is having his takedown, in fact, having it this week I think.

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    Brian Heisler Reply:

    Hi Michele,
    I had the surgery (all in one step) 10 years ago this month – Aug 1999. I was 33 years old, not in my 40′s like you, but if it helps at all, my recovery went pretty well.

    I was sick for years with UC. During the 90′s I was a single dad, went back to school, and always worked 2 jobs. I had small bouts of UC but nothing major. In the late 90′s I was upping my workload in school and working and coaching a hs bball team…this pushed me over the edge, physically. By now my UC was causing 20 bm’s a day, all w/ blood (sorry to be explicit).

    Anyhow, I tell you all that to show that when I finally went in, i was wiped out physically – even tho I was 33 my body was in rough shape. My HCT (hematocrit – blood volume) was 11. My heart was very good so they decided on a 1-step (both parts in 1 surgery) as long as there was no sign of Chron’s Disease.

    It took them a week to get me stronger for surgery (feed me with IV), surgery was around 7-8 hours – 2 steps together – I was getting married 4 months later – did not want to go back in for a takedown, also they had to stop in middle of surgery as they thought maybe Chron’s was present – then 4 days to recover. Then I had some complications with perforated lining in my small intestine. I stayed in for another 25 days or so w/o eating or drinking, only wet sponge to my lips and an IV.

    I went back to work after 2 months, then it took another 4-6 months to really get back to normal.

    Post-UC life: Incredible. What you eat is critical, and take immodium. Rice, toast, peanut butter, yogurt (good for pouch, bacteria), bananas, bland foods in general…and take the whole recovery slowly. Lots of rest and LOTS of water, Gatorade. Even years later – when you are totally healthy – you will realize that now your body works and reacts differently…I make whey protein powder shakes w/ peanut butter and bananas and mango and yogurt. I started this for my workouts, but then when I noticed how well it effected my stomach and bathroom trips and energy levels, I ‘googled’ whey and saw that it actually could help me and my plumbing! I just don’t mix as much whey if I am not working out (don’t need too much protein).

    Also, someone told me to try watermelon – it has been a miracle food (for me) – when feeling lousy I have watermelon (seedless!). Also warm tomato soup seems to help with a blockage.

    This surgery absolutely, 100% changed my life for the better, and I had a very difficult surgery and post-surgery time. I still would do it again – even including the no-food-AND-water-for-20-days piece of it…!

    4 months after surgery I was married, then 6 months later got my college degree. I had 2 more children, switched careers, more schooling, etc., etc…(now I am web developer at New Balance). I felt so ENERGIZED after dealing with UC for so long (from age 18? to 33).

    Good luck (OK – I do not believe in luck). God bless.
    Brian

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    Michele Reply:

    That’s awesome! Glad to hear you are doing so well. Thanks for tellingme about how it went. I am pretty healthy right now, Remicade has been keeping me in an “almost” remission for a couple of years now. I am just tired of all the meds, especially since they aren’t getting me all the way “there.” So I really like reading about all these success stories. So happy you are doing so well!!

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    Mark Eastabrooks Reply:

    Brian, you are a true inspiration to us all. I am so glad your life is going so well and that you feel good again. I hope to join your ranks in time but I am 50 now, not an old man but not a kid anymore either. I had my reversal almost six months ago not but I still cannot stop a BM and have had several embarasing accidents in class and on the way home from school. Still a full time student for seven more classes, I retired from the Navy after almost 29 years of service. Anyway, they removed my rectum but left my sphinkter intact (so they say) and I hope I gain a little more control in time. Do you think I still have a chance of running again?

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    Marsha Reply:

    Michele (47 in 2009), I hope all is well with you. I put off J-pouch surgery for UC until I was in my 40s, had my two sons, and was told I no longer had a choice (early stage colon cancer). This was a very difficult surgery, and after 12 years I had complications/blockages, but I have never regretted my decision. No longer do I EVER have to run to the bathroom. No longer do I have pain. And, no more accidents. Recently my 23 year old son had the same surgery, Although he recovered in 3 days and I in 10 days (until they let us out of the hospital), we are both adamant about how it was one of the best decisions of our lives.

    I wish you luck!!

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    Jeff Reply:

    Hey Michele, I’m the son Marsha (above) is referring to. I also think surgery was one of the best decisions I’ve ever made. The only regret I have is waiting so long to get the surgery. I’m having my takedown surgery (in order to get rid of the colostemy bag) on July 5th. I can’t wait! The 3 months I had to wait in between the surgeries flew by. I think you should make your own decision, but it was the best choice for me.

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    Michele says:

    July 15th, 2009 at 6:04 pm

    Oh yes, I really enjoyed Brevin’s story, he’s got a great sense of humor. I saw your posts about a year ago, when it looked like the Remicade was working. I remembered your site when it started to look like I’d be having my own journey.
    Went to j-pouch.org but didn’t see the women’s stories you mentioned.

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  3. avatar

    Another Michelle (Michelle K) says:

    August 5th, 2009 at 8:17 pm

    Hey Michele,
    My husband just went through the ileostomy and j-pouch surgeries this past year. He will be 47 in 7 days. He was not ill at the time of his surgeries and he lived over 25 years with UC, managing it VERY well with over the years with sulfasalzine and in most recent years, asacol. We chose to have this surgery since the risk of cancer increase greatly with each passing year and the thought of going through this when he was in his 50s or 60s sounded frightening. He looks great now and seems very healthy, but we have not been able to get his butt-burn under control since the j-pouch take-down in February. I am searching frantically for more information on how I can help my husband out of misery before we decide to go the permanent ostomy route. I posted a web site where I found some more contacts to email so I can have some more personal discussions. Feel free to email me. :)

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    Gillian Reply:

    Hi Michele, I am 47 andhad the J pouch op done 7 years ago.I suffered with UC for 20 years so things were getting a little risky to leave it any longer. My op was done in I stage and I have to say it took me 18 months to recover due to the pouch being used form the start acid burn was really difficult to deal with. When you are saying about butt burn for your husband it is really painfull and can get you down. One of the ways I deal with this is sitting on a bidget. My poor husband has had to fit 2 as wee have moved house twice since I got the op. I have also found eating marshmallows, banana’s also help. I am waiting to go back into hospital because I have been complaining about this burning for ages and also a feeling of burning up inside which I can’t get to, to doctor myself. The surgeon has said that I have a narrowing and I am needing the passage stretched. Hopefully this will help. Not sure it this will help but atleast its worth a try as it gets very frustating as it comes on so quickly.
    Take care Gillian(47) from Scotland

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  4. avatar

    Casey says:

    August 20th, 2009 at 7:58 pm

    i have ulcerative colitis i have been on a crazy diet and i am fully healed With out any flare ups

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  5. avatar

    gut fat says:

    November 12th, 2010 at 4:37 pm

    Great post. I know this is not quite on subject, but I just wanted to add that this site theme here is pretty neat. Is there a name or something? I do not know how to look.

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  6. avatar

    Noelle says:

    April 8th, 2011 at 6:58 am

    My ex husband had an ostomy. He sells a hard case that protects the pouch bag from accidents.  I just found  out just recently that his cancer has came back and will  have a surgery to remove his colon.  Go read his website http://www.ostomyarmor.com. 

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  7. avatar

    Angela says:

    October 2nd, 2011 at 8:53 am

    wow, i see everyone so young on here when MY drs are saying i am too young???????, which i know im not my baby sister had her colon out in her 20′s, 2 years younger than me im 46 & she had hers done yearssssss ago, i cannot go on my own @ all, enemas everyday, not fleets, big 5-6 gallon ones that take 6 hours out of my day,…..neverrrrrr do i get clean after years of doing this, any good docs in Houston, texas anyone knows about?
    thanks angela

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  8. avatar

    Barb A. says:

    December 24th, 2011 at 9:06 am

    My husband will be having the jpouch construction surgery this coming spring. we will be going to the cleveland clinic and we were wondering if anyone can give comments on the surgeons that they have liked/disliked, etc. He had the first surgery to remove his colon in May 2011 and we were happy with his surgeon, but we didn’t have a choice because of the urgency of his situation. This time around, we wanted some control over the choice and I thought you all could help us. Thank you!

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    John P Reply:

    Barb,
    I’m from the Cleveland area and had my first surgery on Haloween. I had a single port proctocolectomy with j-pouch and ileostomy. I had my reversal surgery on Dec 19. Things seem to be going ok so far. My surgeon was Meagan Costedio. She is fantastic. She’s the best doctor that I’ve ever seen. I’m very happy that I ended up at her door. Also, Dr. Remzi is supposed to be the best J-pouch surgeon there is, but have heard that he’s all business, and doesn’t have a good bedside manor. Hope this helps and best of luck to your husband.

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    Barb A. Reply:

    John, thank you so much for your reply! It is very helpful. Did Dr. Costedio use the robotic method to complete your surgery? If so, how did it go?

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    John P Reply:

    Barb,
    You’re welcome. I’d be happy to tell you more about my experience. The surgeries went well, and I’m recovering pretty well. If you want to, send me an e-mail to jplatner2@cox.net and I’ll e-mail you the details.

  9. avatar

    John W says:

    September 11th, 2012 at 11:12 am

    Hello all,
    I have my takedown surgery on 9/17, wish me luck! Thanks for your stories and advice. God bless.
    John W

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  10. avatar

    green energy says:

    October 1st, 2012 at 1:14 pm

    Pretty nice post. I just stumbled upon your weblog and wished to mention that I’ve really loved browsing your blog posts. In any case I’ll be subscribing in your feed and I am hoping you write once more very soon!

    [Reply]

  11. avatar

    wendy says:

    October 9th, 2012 at 3:22 am

    I am a 54 years old lady who had her surgery back in 1988. I was the 1st one to have it in my area Harrogate/Yorkshire. So was quite scared at the time. The surgery went well as i had been very poorly with 2 young children. I was good for 16 years or so. I then developed Crohn’s disease! I am on Azathiorprine and immodium etc., I work and have worked ever since my surgery not having much time off at all considering. J. Pouch was the best thing IO ever did. I hated the temp-ileostomy so was so glad when that went. My point is J.Pouch is so much better than UC and the pain and hospital visits, blood transfusions , etc., I was 30 when |I had my surgery and I was so pleased I did it. 

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  12. avatar

    Natalia says:

    May 30th, 2013 at 4:08 pm

    Hi! My name is Natalia, I’m 25, I live in Canada. I have UC for already 6 years. Usually I don’t take any medications, I just follow the diet and try hard not to stress, but once or twice a month I have deep depressions about such life, I feel less of a person, because I can’t just drink cup of cappuchino with girlfriends, go to the gym or even get normal office job (because I’m flatulent all the time, no medication helps and i can relax only if im laying in bed…). I understand, that here most people use J-pouch, but may be here is someone, who made real colon transplantation? I heard about such surgeries, but I don’t know anyone, who did it! If you have experience in this area, may be just doctor consultation, I will be thankful for any information! Thank you very much!

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