HI EVERYONE
by Pixiesndust on Sunday, November 23, 2008 21:09
- 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
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
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
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.
In the hotel room before takedown.
The takedown took 2 hrs and I was in the hospital for 4 days.
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
- 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
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.
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…
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Casey Reply:
December 8th, 2009 at 6:05 pm
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
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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 =)
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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
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Casey Reply:
December 8th, 2009 at 5:55 pm
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
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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.
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Casey Reply:
December 8th, 2009 at 6:00 pm
thanks Bill that is so sweet!
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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…
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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
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Eric Reply:
November 24th, 2009 at 12:32 am
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
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Casey Reply:
December 8th, 2009 at 5:59 pm
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
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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.
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