UC to J-Pouch Story

Photos: Casey

before it all began
before it all began

Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments!

sick times

sick times

I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.

big face

big face

I’m in the middle…This was after just 3 mo. on prednisone and cyclosporine. Not only was my face huge, but I had hair growing on my face that I’d have to shave and my arms were like a gorilla’s. It was very hard for me to be a normal 20 yr. old. Not only did I have to keep tabs on where the bathrooms were at all times, but I was very self conscious about my new appearance. I never really got into remission from my first flare up. Eventually I got tired of the medications, and was taken off cyclosporine and then put on Imuran.

After meeting with a surgeon at Shands at the University of Florida, I had high hopes that he could do a colectomy and have a j pouch and I would be fine. All he said was, you’re young and thin, you’ll heal well and never have pain again. (I should’ve known better) I had a colectomy in Jan ’08 just one year after I was diagnosed. Surgery lasted 8 hours and there were many complications, he accidently cut a piece of my small intestine and in order for it and the j pouch to heal he gave me a temporary illeostomy. I wasn’t happy or prepared.

stoma

stoma

I never completly got used to the ostomy; I was constantly worried about the noises it made and if people could see it through my clothes. Emptying it in a public restroom was very difficult for me and changing the bags took practice. I did have 10 mo. to do so.

After the first surgery I was readmitted a mo. later for dehydration and increased output. My system was not used to having only a small intestine and things were moving through me way too fast. They put me on codeine and lomotil which helped a lot. I was told takedown could be in March and only had to wait. When I got home, I was having discharge and went to my local doctor who found I had a recto-vaginal fistula. I later learned a fistula can be a major red flag of crohns disease to a surgeon. Needless to say the takedown was cancelled and many barium tests and CT scans were done until eventually the fistula healed. My gastroenterologist decided the fistula was a complication of surgery and we could go ahead with the takedown In Oct. The good thing about the ostomy was it got me healthy again. I was able to gain about 40 lbs and eat almost anything I wanted.

with the bag in the hotel room before takedown

In the hotel room before takedown.

The takedown took 2 hrs and I was in the hospital for 4 days.

right after takedown

right after takedown

They closed the ostomy, but left the incision open to prevent infection. Never told me, but they are the professionals. 2 days later they tied the sutures to close the hole. Very painful, hopefully I will never have to go through that again! All they could give me was morphine for the pain while the resident was closing it. Can I just say morphine wears off after about 7 mins and this took 30 mins!?

happy it's over

happy it's over

still happy it's over and almost home
still happy it’s over and almost home

They took the NG tube out the day before I left. As soon as they freed me from the IV I had to go into the bathroom for a sponge bath. (If you’ve been there, you understand) They made me eat and have a BM before discharge.

my stomach back
my stomach back

Not too bad of a scar. I got my tattoo after the first hospitalization. I’ve always loved stars and wanted a green shooting star to wish for hope and health. Didn’t end up helping, but that’s the story.

About 3 weeks after the takedown, I started vomiting again and went 24 hrs without a BM. I rushed to the ER where they did a CT and X ray and found a complete bowel obstruction. Hey I don’t do things little do I? Apparently the scar tissue where the ostomy used to be healed together and it closed off. I met a wonderful (local) surgeon and she said I needed surgery…that night! So 3 hours later and one huge scar from my belly button down I was in my room. I stayed for 4 days and went home in a lot of pain.
It is 1 mo. after the 3rd surgery and I’m just now starting to get back to school and work. My intestines seem to be healing well and I’m only going to the bathroom 4-6 times a day.
If I could give any advice to anyone reading this, it’s to know what you’re getting into before you decide. Surgery, especially this kind, is life changing. I have a great support system of family and friends who love me now matter how I look or what I have to face. It’s important to rely on these people during this process -something I have difficulty doing sometimes. Okay, so thanks for reading…hopefully I’ll get a picture of my recent incision and I’ll keep ya’ll posted.

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30 Responses to “Photos: Casey”

  1. Dennis said

    Great story. My takedown is in two weeks! I hope all is going well for you. Take care. Dennis

    • Rhiannon said

      Hey casey do you have any recent photos of what your scar looks like now? I’m due to have a rejoin in a month’s time and i”m scared that i’ll be left with awful scarring. Thank you so much for sharing your story, it’s a huge help to read about others in similar situations. x

  2. Casey said

    I’m sure I’m a little late, but I hope everything goes well!! I know it will!
    Casey

  3. Hi Casey
    Thanks for publishing your story. There is a research Project at McGill to provide education and encouragement to patients with new ostomies. The idea is that you take a picture of the problem area and send it in. A nurse will examine these pictures every day and phone you to discuss it. You can see the web page at . We are just in the stage of recruiting subjects for the first phase of the study, where patients with stable ostomies will try out various ways of sending in their photos to find out the most convenient. We want to iron out all the mechanical difficulties before we burden the new patients with an additional problem. It seems to us a helpful thing to provide skilled n nurse advice to a person who has a difficult life changing situation.
    Thanks for your writing
    John

  4. Casey said

    John,
    That sounds like such a good idea. I had a nurse go over the eqipment with me, and how to clean and take care of the site. However, I think it is important to let patients know the emotional side of having an ostomy. No one was there to tell me how it would affect me personally as far as my confidence and social life. Thanks for reading.
    Casey

  5. Della said

    You are still beautiful. I just wanted you to know that 🙂

  6. lyn said

    Hi im a second year nursing student and found your story very imteresting your a very brave young women, I was wondering if you would give me the permission to use the picture of you with the stoma bag, as part of my poster presentation at university
    many thanks lyn williams

  7. Casey said

    of course lyn, feel free to use any picture you’d like. if you would like other let me know at casey.duncan6@gmail.com

  8. I enjoyed reading your story Casey. I am in my early 20’s as well and just went through with a couple surgeries bc of my Ulcerative Colitis. I ended up spending 57 days in the hospital, between the two surgeries. Along with that, I was in ICU for 10 days after my first surgery. My first surgeon accidentley cut my stomach lining with a laser (Needless to say that caused a lot of complications!!!) You can read my full story on http://www.riseandconquer.org and let me know what you think! Your story seems very similar to mine.

  9. Brandon said

    You look so good in your underwear…i would love being in bed with you with or without a stoma bag 🙂 That must have been so scary. I was just looking up stuff on stoma bags because i had a weird dream last night about some dude with one. I looked at your pics…and I can’t believe it, you actually look hot with all this going on. Your bod is kickin. I love your little camel toe. Hope your tummy feels better.

    • macy said

      What a weirdo! lol

    • Sam said

      Brandon, you’re such a sick pervert. why would you post such disgusting comments after such an inspirational blog that must have taken guts to post. sicko.

      Casey, you are so very very brave. Good job and good luck.

      • Dave said

        First. Yes Brandon’s comments are inappropriate.
        Hopefully these will not be also : Casey, you are a beautiful woman and I hope you realize that any scars you have will be overlooked by the right person. Wear them with pride at everything you have overcome. I wish you the best and I hope that all the pain is just a distant memory from years ago.

  10. Pam said

    Dear Casey,

    I just had colorectal surgery done myself and just reversed it 3 wks ago (takedown). I am wondering if you’re needing to take imodium to slow down bowel movements and also if you had any trouble with spasms and if you needed to take medication for this and if so for how long. I am sorry things did not go so smoothly for you. I think I did ok through my surgery nothing nearly as bad as what you went through! I don’t have anyone to talk to, I am just trying to understand the healing process after my takedown, this seems to be the hardest part for me. I’m dealing with lots of pulling (it’s painful), inflamation and diarrhea, even a hard time urinating at times. Everything seems to be inflamed and as I said it’s been 3wks after my takedown. However, I do have good days to but I just feel as though I still have to use the bathroom at least 12 times daily and sometimes in the middle of the night. Any of your input would be greatly appreciated.

    Best Wishes,

    Pam

  11. Pam said

    Dear Casey,

    I just had colorectal surgery done myself and just reversed it 3 wks ago (takedown). I am wondering if you’re needing to take imodium to slow down bowel movements and also if you had any trouble with spasms and if you needed to take medication for this and if so for how long. I am sorry things did not go so smoothly for you. I think I did ok through my surgery nothing nearly as bad as what you went through! I don’t have anyone to talk to, I am just trying to understand the healing process after my takedown, this seems to be the hardest part for me. I’m dealing with lots of pulling (it’s painful), inflammation and diarrhea, even a hard time urinating at times. Everything seems to be inflamed and as I said it’s been 3wks after my takedown. However, I do have good days to but I just feel as though I still have to use the bathroom at least 12 times daily and sometimes in the middle of the night. Any of your input would be greatly appreciated.

    Best Wishes,

    Pam

    • Casey said

      Hi Pam, Yes I take lomotil as well as codeine to slow my BM. If I don’t take my medicatioin sometimes I will get severe stomach aches and be in the bathroom all day. I have never had formed stool, just liquid…but the lomotil helps so much with the frequency. If you have any more questions feel free to email me at casey.duncan6@gmail.com. I check that everyday, this site, not so much.. Thanks Pam and good luck with your healing. It takes a while , but I hope the inflammation will go down soon!

  12. Jo said

    Hi Casey, I am looking for advice really my son Aaron is due to have a stoma on Jan 18th which he is very worried about, he is 17 years old and very withdrawn already due to a life time of upset and illness. We visited his consultant 2 weeks ago and were told this was the last resort due to 17 years of Heirsprung disease. He does not have any friends and does not talk to anyone of his condition other than myself it is so hard to see my son wasting away and i truely hope this will give him a new lease of life. have you got any advice for him x Thank you for sharing your story x Jo x

  13. Damien said

    Hi Casey, i’m Damien, i’m 27
    I live in France.
    I had the same surgery like you, but i choose the permanent ileostoma
    I want to share my experience about this surgery like you do to help people in the same case,

    I’ll give you my mail

    damien-bocquet@live.fr

    Bye

  14. Kare said

    Thanks so much for sharing the pictures. I have ulcerative colitis and I am on remicaide but it is a scary medication to take. I am worried about taking it for the rest of my life. My husband would like me to have the surgery but I am very scared about what happens and especially how it looks during the process. I really appreciate the pictures it helped me realize how it will be more visually. That takes guts to put this online Thanks again. 🙂

  15. Denise said

    HI, im 13 and having the reversal feb 9th. i loved your story. thanks so much.

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  17. Erin Mading said

    Thank for telling your story. I am currently at the hospital with my 15 year-old daughter. She just had her second surgery to connect her j-pouch on Wednesday. She is extremely nauseous,cannot control her stools and had been vomiting. The doctors don’t seem to concern. Have you ever heard of anyone feeling this ill after surgery? Thanks, Erin

    • pixiesndust said

      I definitely think surgery affects everyone in a different way. Your daughter is in the right place though to be having bad diarrhea and vomiting. Hopefully you have a good team of doctors and nurses looking after her. I do remember being very sick after the surgery, it takes the body a looooooongtime to adjust to such a huge organ being removed. Definitely give it time and hopefully it she can adjust!
      Casey

  18. Bart Best said

    Your story is helping me out a lot I have to go through the same kind of surgery in about six months to close my ostomy and I am kind of scared but you made it seem a lot easier or at least easier for me to handle. Who am I kidding I am scared and I am nervous about the scars that I will have and the pain and possible complications that was terrible that you had to go through the third surgery. I am going to bring it up to my doctor so hopefully we can avoid that type of complication. Thank you so much for your words of encouragement
    Bart Best

  19. ernich said

    Tank you for sharing Casay.

  20. Bree said

    Hey Casey, I am 13 and i have just recentally been diagnosed with Servre Ulcerative Colitis. I have tried a whole range of different drugs and none of them seem to be working. I agree going off and on the prendizone SUCKS!!! My Doctor is trying to talk me into having the opperation, but i am very scared! Does removing your intestine make things better?
    Thank you so much for your photos and story as it makes me feel better knowing someone going through the same thing as me 🙂
    Bree

  21. Casey said

    Hey Bree.
    If you’re doctor is suggesting the surgery it may be time to consider it.I know how it is to put it off and keep trying different drugs because you’re scared of surgery, trust me! Ultimatly it is your decision. You’re doing the right thing by reaching out and doing research. If you do go through with it prepare yourself mentally as well as physically. Give yourself at least 6 months to recover and do not think it will be better over night. If I learned anything it’s that you have to let your body do what it needs to do. The pain is completly gone and all I have are scars and many BMs. I live a happy normal life (it is 6 years later) and I would not regret the surgery for one day- there’s no way I could deal with the pain of colitis anymore! If you have any other questions or just want to chat, my email is casey.duncan6@gmail.com. I don’t go on this site as much anymore.

  22. Lavina said

    We absolutely love your blog and fiind almost all of your post’s to be just
    what I’m lolking for. can you offer guest writers to write content to suit your needs?
    I wouldn’t mnd producing a post or elaorating on a lot of the subjects you wwrite in relation too here.
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  23. Victoria said

    Hello , I am Victoria. I have had uc since I was 12 am now 34 . I have not had a flare up in 7 years I have one now . I don’t have a doctor. I am just scared . If I do t see a doctor. I don’t know what to do . I go to the bathroom 12 to 17 times a day . I am so tired and week .

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