HI EVERYONE

by on Sunday, November 23, 2008 21:09
This entry is filed under: UC

 

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…my email is yesac87@hotmail.com or just leave comments here!

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 com7Red onlinesverigecasinon.com har lange varit ett av de mesta populara natcasinona i vart grannland Norge. 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

happy it's over

 

still happy it
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”ve always had God in my life and people ask me how I stay so full of hope and positive about things…my faith is what makes me strong. Knowing everyday someone is looking put for me. However, I do 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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24 Responses to “HI EVERYONE”

  1. avatar

    Leanne says:

    March 26th, 2009 at 3:14 am

    i know exactly what u feel! hi. my name is leanne. ive been suffering from so much pains but hid it from family and friends. but i came to the point where i would just throw up everything i ate, couldnt eat nething, i was just living of ensure n nilla cookies for almost 5 months it was insane! on oct ’07 i was 19. i was diagnosed with crohns. none of my medications worked for me. from asacol, prednisone, to humara etc…i was put under lots of painkillers, percuset, morphene even hydro morphone etc… i was in that much pain! so doctors didnt know what to do they didnt think that surgery was the solution because if i go under it it wont help anyways…thats what they said. i didnt know much about the right terminologies and procedues, coz at that point i didnt care anymore i was loosing hope i went through so much from needles, blood transfusion, colonoscopies endoscopies a couple surgeries for biopsy (one i was awake!). i was 115lbs down to 58lbs. i couldnt eat(eating through my vein), i coudnt get up to walk or even to go to the bathroom had hard times breathing and talking. I WAS DYING. my hemoglobine count was 1.6…impossible i know but its true. doctors was loosing hope too. they just decided to send me home and ordered that if i come back to the hospital with pian to just give me a shot of hydro morphone and just send me home again…and so on. literally we were just waiting for my time. 2 days before the day i was supposed to go home (from 2 1/2 months stay)…they decided to have me go to a last ct scan (just incase?) result came out later that day that i have to go to a major surgery. they found a pretty big tumor in my stomach. they said it was a little bigger than a size of a quater already so they dont think medicines will help and there wasnt enough time to waste so surgery wa the only option. mix emotions. then that night i went under surgery on the process, doctors found out that the tumor they taught would be just a lil bigger than a quarter was so hugh like a size of an apple! so yeah it was removed. but before goin through the surgery my dad asked the surgeon if i will be having an ostomy after it, said no it wasnt necessary i didnt know what they were both talkn about the doctor didnt even take the time to tell me and explain he just told me that its nothn to think about. but i guess since i had that huge massive tumor i had to have it. but i didnt know that i ended up having it till 2 days after the surgery (i was sleeping the whole time just kept pressing the pca eachtime i wake up n itll just put me back to sleep right away) i found out when a nurse (not my nurse) came in my room n told me she needs to clean me up. i was like no im not ready yet n i can clean myself just give me about a couple more days. but she insistead saying “ok hun if u want ill just change ur “pouch” and then maybe show u how to do it then after u can do it yourself if ur not comfy letting others do it”. i was like? huh? then she pulled down my blanket n lifted up my gown. then huwalla! oh i was going crazy! any ways i had the surgery last year nov 15 the ostomy was supposed to stay for 2-3 months. i stayed in the hospital until dec 1. i was so glad i had the chance to spend Christmas with family. i turned 21 on oct 17 spent it in the hospital even spent thanksgiving there n i guess holoween too? lol. i was admited to the hospital round late sep my bday was. i stayed almost 3 months in the hospital. around january i gained back most of my weight. i came back to my surgeon to talk about taking down the ostomy but i insisted n requested to have it done around summer, i wanted to go to school, i wanted to stay out of the hopital for quite a bit more. but tomorrow (actually later in 7hrs) i have an appointment with my new surgeon about the schedule of the take down. i thought i should go online right now n just kinda educate myself and read more infos about it and try to know what to expect…so i landed here on ur blog. i ready somewhere “… 2 days later they tied the sutures to close the hole. Very painful, hopefully I will never have to go through that again!…” so what is that again? do i have to go thru that too?…please i hope u can get back to me right away im so scared. i wanna know more about it from u who already experienced it and know exactly how it felt coz i know the doctor would just probably say itll be uncomftable (but it realy doesnt mean that) -totally off…please some advice? sorry that this went too long i already tryed my best to make it short as much as possible but everytime i think and talk about it again…im just happy im better now no pain. im eating…i really feel much healthier even before i got sick im trully *ehem* WEre trully blessed! really is a miracle…! oH thank God thank u Lord! praise You! im happy and hoping for your continues health improvement. hey im sure by now u already know that there is nothing impossible to Him. just have faith and never forget… 😀 hope to hear from u soon…

    [Reply]

    avatar

    Casey Reply:

    Leanne! your story sounds so familiar thank you for sharing!! you have literlly been through hell! it’s unbelievable how doctors and nurses can treat people that way, where is the humanity you know? they only see us as another case or cattle sometimes. anyways, my email is casey.duncan6@gmail.com please let me know how you are doing these days and let me know if i can help. stay positive!
    -Casey

    [Reply]

  2. avatar

    Danielle B says:

    August 11th, 2009 at 4:40 pm

    Hey Casey, I noticed your around my age when you had the surgery…im 18 years old and was diagnosed when i was 8, Im going for surgery next month, I havent had the chance to talk to any1 about post surgery and what its like…if you could give me an email at danielle_bulley@hotmail.com that would be awsome, thanks =)

    [Reply]

  3. avatar

    aj says:

    August 19th, 2009 at 9:48 pm

    Hi Casey I also had uc I was on steriods for quite a while which didnt work.Eventually my doctor told my parents he would have to operate being 14 at the time and uninformed i just went along with what my parents and doctor decided, and was encourged that i would perfectly normal afterwards. I regret it now (im 21 now) having 8 bowel movements a day feels just like uc its more than an inconvience especially when im out with friends some where and theres no restroom or at work where i cant always take off it can get VERY embarrassing ive tried a number of meds currently im on lomotil do you have any suggestions that might help

    [Reply]

    avatar

    Casey Reply:

    hi AJ- I take codeine along with lomotil. It’s a painkiller like vicodin or percocet jsut without the tylenol, so it tends to constipate normal people and slow down us fast digesting people. if your docotr is willing you can always up your lomotil or double up with codeine. it’s tricky to get your intestines on schedule i’m still trying to figure out of it’s what i eat or when i take my meds a year later. good luck and i changed my email to casey.duncan6@gmail.com if you have questions or comments feel free!!-Casey

    [Reply]

  4. avatar

    Bill says:

    September 4th, 2009 at 3:30 pm

    Hi, just wanted to say you are a beautiful person, I wish you the very best.

    [Reply]

    avatar

    Casey Reply:

    thanks Bill that is so sweet!

    [Reply]

  5. avatar

    Seth says:

    September 27th, 2009 at 5:02 pm

    Hey Casey,

    Thank you for sharing your story. I am veterinary student at UF, and have been in g’ville for 6 years now. I was diagnosed with UC in 2005, and I am contemplating J-pouch surgery. Since we hail from the same neck of the woods, I was hoping you might be able to answer some of my questions. If you could shoot me an email, I would really appreciate it (musicvet@ufl.edu). Again, thank you for your story! All the best…

    [Reply]

  6. avatar

    David says:

    November 23rd, 2009 at 3:10 am

    Hello Casey. I’m a graphic designer working on booklet for the french federation of ‘ostomied’ patients, and I’d like to be able to use one or two details of your pictures. First question, are you OK with this ? Second question, what kind of credit should I put ? (They seem to be personal shots, so obviously no ‘professional’ copyright release should be necessary.) If youd like a copy of the booklet when it’s printed (if all goes well in december) let me know how to send it to you. Yours is a very moving and courageous testimony. Hope things are much better now.

    Best wishes – David

    [Reply]

    avatar

    Eric Reply:

    Hi David, I can’t respond for Casey, but I can tell you that the content of this website is licensed under Creative Commons 3.0

    [Reply]

    avatar

    Casey Reply:

    hi david! of course please use any pictures you need to! all of them are from my library and i have others if you need specifics, anything to hepl other going through the same thing! i changed my email to casey.duncan6@gmail.com please email me and i will let you know my address to send me a boocklet. good luck!
    -Casey

    [Reply]

  7. avatar

    kim says:

    January 29th, 2010 at 8:26 am

    hi casey! i just want to point out that you have any amazingand touching story. my name is kim and iam from the small town of Oakdale CA. i was diagnosed when i was 16 with what they call FAP (Familial adenomatous polyposis, which is an inherited disorder characterized by cancer of the large intestine (colon) and rectum. i first had my surgery when i was 21. about 10 months ago. i was told that i would go in for a 6 hour surgery at UCSF with the outcome of a j-pouch. instead i got a 12 hour surgery an a right sided ileostomy bag. my body didnt take to the surgery and i had emergency surgeons called in because my intestine was also cut too short and couldnt attach to the anus. the surgeons stretched, pulled and attached but only to realize that it was cutting off blood circulation and causing me to turn blue. they attempted that 3 times (and boy did i feel that later lol). after being hospitalized for 10 days i went home feeling good. 3 days after i got home i started feeling depressed because i could not get my wafer to attach to my skin with out any problems. i had an allergic reaction to the paste which ate the top layer of skin. so after multiple 2hour trips to my surgeons office and 3 weeks of pain, discomfort, complications things started to look better, so i thought. a few days after that i found myself sincerly dehydrated. i went to my local emergency depatrment to find out that i was near hospitalization and kidney failure. for awhile there i found out that the e.r was my second home because i was having so many internal problems and my body responded badly to where i was dehydrated every 1-2 weeks. i had 15 emergency visits with 3 months. after resolving the problem and containg my liquids it looked well for 1 month. late summer i started vomitting. found out that my j-pouch was filling with fluids because my body couldnt process fast enough. i had to have a rectal procedure to drain the pouch under anastesia. i know have to get that every 6 weeks. i had multiple complications, with that for 9 months now. but received good news that i have a reversal surgery coming up next month to try and reverse this. and have high hopes that it is a positive outcome. if all goes well , i will have my ileo taken down in 2-3 months following.

    [Reply]

    avatar

    Liz Reply:

    Kim,
    Thank you for sharing. I do hope this note finds you in much better health! 
    From my own surgery at UCSF, I can relate to so much of what you say.
    Who was your surgeon? Did you have Dr. Varma and her husband as you GI doctor? 
    I’m trying to learn how to navigate life after surgery and it would mean so much to me to connect with those who had Dr. Varma and a similar experience.
    Thank you for your openness and my best wishes for your health and happiness. 

    [Reply]

  8. avatar

    Rob says:

    June 18th, 2010 at 9:27 pm

    Awesome! Thanks for sharing, and keep your spirits up.
    My son was born with issues which required that he have 2/3rds of his colon removed.
    I happened upon your site while researching his situation.
    Thanks for the time you’ve put into this. It seems to be helping a lot of people (myself as well).

    Take care!

    Rob.

    [Reply]

  9. avatar

    Kyla says:

    December 14th, 2010 at 10:34 pm

    hi Casey, my name is Kyla i am from illinois. i am 26 yrs old. i had a rectovaginal fistula after i deliverd my son may 2008 and it took 3 doctors telling me nothing was wrong with me and that it is impossible to have my symptoms which were well u had a RVF so u know those symptoms and they were extremely embarressing, and after a year and a half and 2 treatments for cervical cancer i demanded to see a gastro and he did a colonoscopy and found the RVF and since oct 2009 to july 2010 i have had 3 RVF repairs cuz the 1st two faild and i had a colostomy bag placed during my 2nd surgery jan 2010 and so now it is dec 2010 and im FINALLY going back in to see if the 3 RVC

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  10. avatar

    Kyla says:

    December 14th, 2010 at 10:36 pm

    to see if the 3rd RVC repair from july 2010 workd if so i can schedule to get the colostomy bag reversed. ur story touchd me alot and i just wantd to share my story with u and i hope u r doing gr8 now. im super nervous, were u nervous and scared like me.

    [Reply]

  11. avatar

    medical students says:

    March 21st, 2012 at 6:59 pm

    medical students…

    […]Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world[…]…

  12. avatar

    Andra says:

    April 18th, 2012 at 6:24 am

    I am the girlfriend of a sufferer of acute ulcerative colitis, AJ.  This is probably going to sound like a letter to a newspaper columnist but I am in dire need of advice from people who have been through this sort of thing.  So I beg for some patience and hope you can get through this bit of story and outline, and maybe spare some time to reply…?  I’m just hoping some of you are still around as the thread has been around since 2009.

    AJ had a total coloctomy back in June 2010 and final J pouch route completed in January 2011.  It’s been almost 15 months since the last surgery and he’s doing well, for the most part.  He’s not the type to seek help or admit he’s in pain; he was suffering badly and refused to admit it for a very long time.  His GP, in exasperation, told him to get into a cab right that minute at their last appointment and go see a specialist friend who the GP happened to know was in at an office in a hospital.  Upon arrival, that specialist offered AJ a glass of water, watched AJ pick it up, and before even managing to retake his own seat, got on the phone to admitting and asked if there were any beds available – he wasn’t letting AJ back out that door.  They told him he was well on his way to dying, that he wouldn’t survive another week.  The total coloctomy took place 4 days later.

    As you can imagine, he’s a stubborn and obstinate grouch more likely to snap at a helping hand than take it.  Even 15 months later, still in daily discomfort, regular interval pain, suffering too-often hemorrhoids, visiting the loo 20 times a day, headaches, and some occasional bleeding, he refuses to admit something may still be wrong or that he’s unhappy with all the pain.  He insists that he’s fine, that this is all normal, that it’s been the same story for the past 15 months, why should he expect any different.  It doesn’t help my case that he’d had a colonoscopy back in January this year and was told everything looked normal.

    The thing is, we’ve been arguing about it for so long that I’m beginning to wonder …is it?  He eats mainly white bread, rice, hummus, biscuits, protein shakes and pad Thai (rice noodle stir fry with prawns, chicken, well cooked onions and chives).  He makes his own well-cooked chilli con carne which he insists despite the beans actually does him well.  When he eats out, he has well cooked veg, roasts, mash, and steak.  Generally he eats more rice than pasta or bread, avoids anything high in fiber or high in acidity; he will have less than a slice of any wholemeal bread (usually 2 of the tiny slices served as a pre-meal nibbler) and the only tomato he has is well cooked in sauces.  While he might have lime juice in his gin and tonic, he doesn’t drink much of any drinking juice or similar fruit juices.  On the surface, all seems to be the right sort of things to do – but this continued suffering is wearing on him.  I know he’s thinking, “Wasn’t some of this supposed to go away?”  And yet he’s still in regular pain, still in daily discomfort, heads to the loo so often, etc.  It just really wears him down.

    Do anyone have any insight into any of this that you can share?  Have you heard of similar continued symptoms?  I know that things are supposed to generally get better after the first year, and he’s been patient this whole time – but it really, really isn’t.  Convincing him to see his GP again is a whole other story and a completely separate battle I’m going to have – I’m just trying to get a better view on what’s going on, what might be going wrong, and gear up to drag him by his ear if I have to.

    Any input would be greatly appreciated.
    Thank you very, very much.

    [Reply]

  13. avatar

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    April 28th, 2012 at 6:34 pm

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  14. avatar

    Sandy says:

    May 2nd, 2012 at 4:43 pm

    I have had ulcerative colitis for 7 years.  I was hospitalized on and off for several months in the beginning stages of my disease. Finally, my drug protocol 6 mp, 10kg of remicade   and ascacol  have made me in remission for 4 years. My gi dr told me my risk of cancer is increased because of all the drugs I am on so we reduced the 6mp and low and behold 6 months later I had a flare.  After 3 months of steroids I am back in remission.  I am considering the j pouch surgery and have spoken to a surgeon who says I am a perfect candidate.  Ihowever, after reading all these posts it seems most people do the surgery when all else fails. Since, I am doing good do you think I should do the surgery? I am so confused, I only go to bathroom twice with surgery it’s like 1o times.  However, cancer risk scares me too. What do you think

    [Reply]

  15. avatar

    Adrian Garland says:

    February 5th, 2013 at 9:08 am

    Hi Casey,
    Thank you for all the info. My best friend is at Walter Reed after stepping on an IED in Afghanistan and I was trying to get some insight. Your story has been a big help. God bless you. Adrian

    [Reply]

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