INTESTINES! Why Have You Forsaken Me!

Meet Justin:

Hey I’m Justin from new Mexico. I’m writing an update from my original post “just diagnosed what do I do” I’m 26 and was diagnosed with uc early June. After the diagnosis everything was going great for the most part. The prednisone was controlling the flair pretty well, I was having few symptoms and was maintaining a healthy uc diet. I was having 2-3 bm’s a day almost fully solid and very little to no blood. Working full time and I felt like I was on my way to remission…….but it was not meant to be…

My Symptoms:

Currently I am in the hospital with toxic Megacolon. Bloody diarrhea, extreme abdominal pain, weight loss, and malnutrition.

My Story:

After my prednisone taper dropped to 20mg a week all my pre-diagnosis symptoms started returning. Started to notice blood again in the poo. At first I thought nothing too much of it after all I was still technically in the middle my first flare. Then the bm’s became more frequent /urgent /bloody. I had a appointment with the g.I. in a few days so I thought if I could hold out til then I’d be fine. But the abdominal pain was becoming debilitating and the bm’s were happening at least once an hour at this point and were pure blood. Got very weak and anemic very quickly. Now I waited a long as time to seek help during my uc diagnosis so I learned my lesson from that and this time got help right away, I called into work and went to the emergency room.

Waited an excruciating 10 hours

in the waiting room crapping blood

and struggling to maintain consciousness.

Finally they saw me and admitted to the main hospital. They stabilized me and decided that prednisone had lost its effectiveness for my uc and were gonna try remicade. But the G.I. team was still concerned about the intense abdominal pain. And it was swollen and very tended to the touch. They did a sigmoidoscopy, and although I was drugged it was too painful to bear. They had to hold me down because I was squirming. Let me tell you about the pain, its the worst I’ve ever experienced. Morphine does nothing whatsoever so they tried dilauded which also did little. Now I’m on dilauded and oxycodone which still does very little.

nose tube

my nasal tube they used to release pressure on the megacolon

They don’t want me on any kind of narcotics because they constipate you but I’m still having frequent bm’s so they’re allowing it. So they ordered an xray on my guts to try and find out wtf is causing so much pain. And I got the wonderful news of toxic megacolon yay!…not! They immediately cut me off all foods and liquids and stuck a tube down my nostril into my stomach to pump it out and start relieving intestinal pressure. So here I sit right now, the tube has been in a day and a half, xrays show that the swelling has not go down and the surgery team is coming in this afternoon to talk about the colon removal. Very depressing news for me.  Surgery is the absolute last resort emergency option for me. But that is my update, would love to hear some feed back from you guys! Give me your thoughts and advice!

Where I’d like to be in a year:

Pain free!

Colitis Medications:

Right now on prednisone 60mg.

written by Justin

submitted in the colitis venting area




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toxic megacolon

46 Responses to INTESTINES! Why Have You Forsaken Me!

  1. Alex July 30, 2012 at 11:27 pm #

    Justin,

    I had the same thing happen to me last summer. I was in the hospital from june 22 to Aug 7th and went from 195lbs down to 100lbs. I had the same symptoms as you but the doctors tried to get everything controlled with steroids and antibiotics which did not work at all. All this medication led to my weight loss (did not eat could not eat) and eventually I became stuck in bed and had to go to rehab to relearn how to walk. I had to have emergency surgery to remove my colin on Aug 1 last year due to three perforations in my abdomen and had 1600CC’s of crap in my stomach. Not to scare you but I would get that colin out ASAP. you will feel much better in the long run. I am now back to almost full health, I had the second step of j-pouch surgery on june 13th and I feel great. I am a step closer to getting back to doing what I use to do with no problems (running, playing tennis, ect.) The first surgery is hard but I think it is well worth it. I will pray for you and good luck!

    A.

    • Adam
      Adam July 30, 2012 at 11:34 pm #

      Hey Alex,

      Wow, that’s pretty amazing, and I’m so FRIGGALICIOUSLY happy that you’re almost back to good health after going through a 50% weight cut like that. Man oh man, I really can’t even come close to imagining.

      Way cool of you for getting back to where you need to be, that’s absolutely fantastic.

      Justin, I’m no doctor here, nor are 99.3% of the people who use this site, but one thing is for sure, the overwhelming percentage of people who have had surgery are super happy just like Alex here with their decision to do so.

      I could rattle off a list of names of others who I met with their colons, but now are colonless and damn happy with their decision.

      So, one thing I think everyone should realize is: don’t feel like you lost anything if you and whoever else you’re making decisions with come to surgery as the best option. You won’t be the first person to be real happy with that decision and you won’t be the last.

      I myself don’t have any first hand experience with it, but a very close relative lived a symptom free life for over 30 years after getting his colon taken out.

      thx again Alex for the positive update you’re going through. And Justin, hang in there senor. These tough times won’t go on forever.

      -Adam

      • Justin
        Justin July 31, 2012 at 5:22 am #

        Thanks Adam, I’m on the fence as far as the surgery, but I will know within the next 2 or 3 days. According to the doctors and surgeons if the remicade doesn’t show improvement in the next few days then I will have no other choice then the surgery. They said if it doesn’t start to shrink it will become septic /toxic will rupture. The only thing I’m really concerned about is that my rectum is equally swollen and damaged so the jpouch surgery will most likely not be an option and I will have to have a permanent illostomy bag

    • Justin
      Justin July 31, 2012 at 5:10 am #

      Hey Alex thanks for the input! That is rough man I’m sorry you had to go through all that. And I’m glad to hear you are doing much better now. I’m in limbo now waiting to see ic they are going to do the surgery or not. Right now the colon is 9cm in diameter and it’s supposed to be around 5cm. But it’s not toxic yet. They want to try remicade today as one last hope to save it. I’m mortified of the idea of surgery so I’m gonna give the remicade a few days to see if there’s a any improvement first and if not then I’m going under the knife. How long did your initial surgery take to heal?

  2. Isabel
    Isabel July 31, 2012 at 12:14 am #

    Hey Alex!

    I am so sorry to hear you are going to have surgery. I just wanted to let you know that perhaps this might be the best for you. Let me tell you that you are about to go through a life changing experience. I will tell you that it will not be easy, but its not impossible. Take one day at a time. Stay positive. I wish you the best of luck! I know your life will change for the better. :)

    Isabel ( diagnosed with UC at 25 had a total colectomy March 2012 waiting for ileostomy take down)

  3. Paul Willoughby July 31, 2012 at 4:11 am #

    That sucks. The good news is you will be cured if they take out your colon. If they do a J-pouch on you, you can lead a normal life. Good luck and best wishes.

    • Justin
      Justin July 31, 2012 at 5:26 am #

      Thanks Paul. The only predicament I’m in is they said in my case a jjpouch h will not likely be possible so I’d be on permanent ileostomy

  4. Dallas July 31, 2012 at 6:40 am #

    Justin,

    My brother in law had his entire colon removed a couple of years ago after a similar story like yours. He now lives with a bag, but he says it was the best decision of his life. He isn’t sick and his life is pretty much back to normal minus the toilet. Good luck to ya!!

    • Justin
      Justin August 1, 2012 at 4:17 am #

      Thanks Dallas! How long did it take your brother in law to recover from the surgery?

      • Dallas August 1, 2012 at 6:04 am #

        Hey Justin,

        To answer your question, I believe they kept him in the hospital about a week after his surgery to make sure there were no complications. After 2 to 3 weeks, he was back at work although he took it easy for about a month or so. You can’t even tell he has a bag. The first couple of weeks were painful, but he kept a good attitude about and that helps.

  5. joanna July 31, 2012 at 9:36 am #

    aww justin. i’m so sorry to hear about this. i’m 22, so around your age, and it scares the hell out of me to have to take my organs out so young. i’m really sick right now, too. my last flare landed me in the hospital for 10 days in august 2011. they wanted to take my colon out then but i opted to try ALL the drugs possible. those ended up not helping for long so i’m going in for another colonoscopy tomorrow to see just how bad things are again.

    i will tell you that remicade was the drug they put me on when i got out of the hospital. it gave me a 3 month remission even if it didn’t last. maybe it will help you more than it helped me. really hoping things get better for you fast.

    • Justin
      Justin August 1, 2012 at 5:45 am #

      Joanna good to hear from you! Im so sorry to hear you’re going through a rough patch too. Its such a bummer when th disease wants to fight back. My first hospital visit was 8 days and that was jusf last month. Thats when i got diagnosed. I really hope you get some good news at the colonoscopy. And hope they can get you feeling better soon. Im fhe same way i absolutely dread getting my organs cut out. They are finally supposed to start the remicade today so im keeping my fingers crossed that i will get some relief. If the megacolon doesn’t start to shrink after a few days of remicade then they are going to remove it.

  6. Isabel
    Isabel July 31, 2012 at 10:04 am #

    I meant to say Justin not Alex! Sorry! May I ask why a J pouch is not possible? Just curious..

    • Justin
      Justin August 1, 2012 at 4:23 am #

      Hey Isabel, the reason they said i might not be able to get the jpouch is because my rectum is just as ulcerated and damaged as my colon and they don’t know if it can be saved

  7. Catherine July 31, 2012 at 12:23 pm #

    My 19 year old daughter had jpouch surgery in May. She had a ileostomy bag for 4 months before that. She didn’t mind the bag at all. She felt so well for the first time in years!! She was thrilled to get rid of her colon. Her colon was ruining her life. She said if anything went wrong with the jpouch, she would happily live the rest of her life with a bag. That’s how her life improved without her colon.

    • Justin
      Justin August 1, 2012 at 5:55 am #

      Hey Catherine im glad to hear your daughter got relief from the surgery. The more success stories i hear the better i feel about the surgery should i have to get it. I’ve only had the uc for about 2 months now and it’s kicking my ass, i can’t imagine how miserable that must have been for your daughter to have to suffer through it for years. Having the bag still freaks me out a little but i suppose it would be much better than constantly being sick.

  8. Bev July 31, 2012 at 4:12 pm #

    WTH Justin?!

    I can’t believe this! Why on earth would this happen to you? Did or were you taking any anti-diarrheals at all? I’m still not sure how this toxic megacolon happens or why.

    I am so so so sorry this happened to you! Surely one of the doctors or even a nurse may be able to ascertain why it happened. It’s the scariest thing going, man! Nobody wants that dreaded toxic megacolon! Sheesh, Justin…

    I don’t know what else to say, or what advice to give you. I thought that you were doing alright there for awhile. I thought that you might have been trying probiotics and kefir and such, and that they would help you.

    Please keep us posted. Obviously, alot of us care about you my friend!! Look at all the people on here, freaking!

    Cheers, and do what YOU want to do. Take all the advice of the doctors and weigh it all up. You may have to make the big decision soon…

    P.S.At least try and enjoy the good drugs you’re on at the moment…lol…

    Bev:):):)

    • Justin
      Justin August 1, 2012 at 6:19 am #

      BEV!!! so good to hear from you! WTH! Is right! Everything was going great and remission was right around the corner then all of the sudden shit hit the fan. I was doing the probiotics and drinking natural anti inflammatory stuff like aloe juice and coconut water and was watching my diet. I did take anti diarheals in the very beginning but once Peternz said not too i stopped. The doctor said its caused when you become constipated or there is a blockage but i was always far from constipated so i don’t know how it started. Maybe because i was eating too much food at once instead of smaller meals. But it all hit in a matter of a few days before that everything was almost back to normal. Hopefully that remicade stars calming the immune system soon so the colon can start healing its self. I wish i could enjoy the meds more but so far nothing even touches the pain its miserable lol. But I will definitely keep you posted and I appreciate all the support. Take care Bev talk to ya soon :-)

      • Bev August 5, 2012 at 2:47 pm #

        Wow, Justin, I really am floored.

        That just freaks me out. That could happen to any of us, you know? Geez…I am feeling so good. So were you…i just can’t understand it.

        I wish like hell a doctor could tell you exactly why something like this would happen. Man, I hope the remicade gets you back to where you were…and then maybe you can start over and try to keep your colon healed naturally. Maybe that can be done!!

        Yes…please do let us all know what’s happening with you, okay? We care…alot!

        Bev:):):)

  9. Karen July 31, 2012 at 7:01 pm #

    I’m sooo sorry that you are going through all this. I also had my rectum affected. I had a total colectomy 31 years ago. I have the koch pouch done. Now they have improved it. It is called BCIR. They even have a website. You can and will have a very normal life after surgery. I went on to have 3 beautiful and very healthy children. UC totally robbed me of my young adult life, but now I can grow old and not have to use a roll of toilet paper a day (sometimes more). My prayers are with you. I pray that you will get through this and live a long happy, healthy life.

    Karen

    • Justin
      Justin August 1, 2012 at 10:34 am #

      Hey Karen great to hear from you! It is a huge relief to hear that its possible to still have a pouch procedure even tho the rectum is so damaged. Have you had any complications with your pouch? Congratulations on having kiddos and living a better life not controlled by uc. It really is a huge weight off the shoulders hearing how much people live better lives after surgery. I appreciate your thoughts and prayers and thank you for the support :-)

  10. Blake July 31, 2012 at 7:48 pm #

    Hey Justin,
    Sounds like a rough time for you right now. Sorry you’re going through it but want to let you know that if you have to get surgery, I think you’ll be happy with the outcome. Sure, wearing an ostomy bag is different, takes some getting used to, but after a while I didn’t even know I was wearing it and I felt so much better than I did with UC. My first non drugged thought after colon removal was realizing that I don’t have to take a shit… and that felt good even when surrounded by all that pain. I’m about to get the 3rd and final surgery for the J Pouch in a couple weeks and very excited to get it over with. I’m okay with the thought of having to go back to the bag if it doesn’t work out because I’ve felt good these last 8 months with it. Good luck to you man, let us know how everything goes.

    • Justin
      Justin August 3, 2012 at 3:06 am #

      Hey blake it is good to hear from you man. Im glad to hear that you’re doing well now after the surgery. It brings some light to the end of the tunnel go hear the success stories of the procedure. Each passing day it’s looking more and more like surgery is going to have to be the option. I have some questions for you about the illostomy bag. Like how often do you have to empty it? And can you hold it if you have to use the restroom but are in a awkward social setting? Wouldn’t the bag fill with gas? And does it smell all of the time? The surgeon just consulted with me and assured me the jpouch was possible.

      • Blake August 4, 2012 at 9:59 am #

        Hey Justin,
        Sorry for the bad news, but it really is probably good news because you will be UC free if you get the surgery. So you had a couple questions about the ostomy bag and I’ll try to answer. It depends really on what type of surgery you’re going to get. I’m getting the J Pouch in 3 steps, a lot of people get it in two steps. Here’s the difference as far as it concerns your ostomy bag. If you get it in three steps, first surgery they will remove your colon and give you an ileostomy. After I had my first surgery, I had this stoma (intestine sticking out of your abdomen) for 8 months and I probably emptied my bag around 6-8 times a day (kind of depends on how anal you are). At first, I would empty it any time there was just a little in it, but once I realized I can let it fill up a bit more, I stopped emptying it so much. I have had absolutely no abdominal pain such as cramping or stomach aches since I’ve had to wear a bag. You’re bag will fill up pretty quickly when your eating or right after you eat, but that’s okay, you just empty it when you want to, there is no rush to get to the bathroom, no feeling like your going to shit your pants because you can’t. After my second surgery they created a J Pouch and I got a new stoma through the same hole in my stomach (meaning they stuck a different part of my intestine out of my stomach because they pull your intestine down to your anus to create the J Pouch and they let that heal). My second stoma is a lot more active because food is not traveling through my whole small intestine anymore. About 10% of my small intestine is inactive and is healing for the J Pouch, no food travels through it until I get my 3rd and final surgery. So, if you get a 3 part J Pouch, your first stoma will produce a lot better output, will be thicker and you wont have to empty as much as you will after your 2nd surgery. If you do it in two steps, you’re basically getting steps 1 & 2 of the 3 step surgery all at once. Your ostomy bag will fill quite frequently, but not to the point where it’s unbearable. You will only have to have that for 2 months though, then you’ll be ready to get your takedown and live with the J Pouch. I hope I’m not making this too confusing, it’s hard to explain on a blog. I did have a couple socially akward moments. I was at the gym one day with my new bag and I was doing shoulder shrugs with the barbell. Well, the movement was rubbing back and forth on the clip that keeps the end of the bag shut and it managed to open it and I felt a warm liquid feeling running down my leg. I knew that it was shit and ran to the bathroom, closed the bag and then got the hell out of there with nobody noticing. The other time, my wife and I had another couple over. I was sitting indian style on my living room floor when I decided to get up and the clip caught my jeans and came open sending a big pile of shit onto my carpet. It was embarrasing, but they were friends, they new what I was going through and it was really more funny than embarrasing. Wasn’t too hard to clean up either. I switched clips and this has never happened since. I guess you just learn. As far as the smell, you cannot smell it at all when it’s in the bag. When you empty it, it just smells like poop. They make bags with filters so gas will escape and it doesn’t smell. The filters stop working after a day or two, but there is not as much gas as when I had my colon. I used to fart all the time, now, every once in a while I’ll fart out of my stoma. You can’t control it, it just happens. It makes a funny noise, but nobody at work has ever heard it when it happens. Another thing you might be worried about is the gym. By your picture, looks like you work out. I love to lift and one of my biggest fears about the surgery was that I wasn’t going to be able to work out. Not true. I started going back to the gym 2 weeks after my first surgery (I didn’t follow doctors orders to not lift anything over 15lbs for 6 weeks). I started lifing really light weights. About two months after the surgery I was pretty much back to the strengh I was before surgery. I wasn’t doing crazy amounts of weights on certain exercises like squats, but my bench actually became better than it was before. Man, I’m making this really long. If you have any more questions, let me know. I know I had a ton of them when I was going through this. Now, I have a million questions about the J Pouch and just hope that works. Take care Justin!

        Blake

        • Justin
          Justin November 5, 2012 at 8:40 pm #

          Hey blake i hope you read this i know its been a long time, i was hoping i could pick your brain about the jpouch surgeries. If you get a chance shoot me a email, justincolton@ymail.com. I hope to hear from you and hope you’re doing well.

  11. UC Family Boy
    uc family boy August 1, 2012 at 5:32 am #

    Hey Mate,
    feels unreal. I read your previous story and to now be here is difficult for me (must obviously be much harder for you) to read, put in plain English it sucks. I was shocked to read it, didn’t expect it but than again this disease is so unpredictable. I guess that is the advantage of surgery- To finally be done with UC and its unpredictability and be able to plan and live.
    Recently I had some blood tests done as I get ready for my full scope and the nurse was telling me about her son who had to have a ileostomy. He was 5 when he first had his symptoms and 6 when he had his first op. Look I guess it is easier for him in some sense because he was so young, he knew no different… Its easier giving advise than taking it so I won’t because in your situation I would be sooo weak, I just hope you can be stronger than me and be an inspiration to us all :-)
    Good Luck Dude

    • Justin
      Justin August 3, 2012 at 3:22 am #

      Uc family boy it is always good to hear from you my friend. I couldn’t have said it better myself, it just feels unreal everything was right on track for remission then all of the sudden everything got derailed. Each passing day they are leaning more towards the surgery because fhd megacolon is angry and continues expand. They are very concerned about a rupture. Out of the last two months i have been in the hospital for 3 weeks. And they will not release me until the megacolon shrinks od is removed. I wish the best of luck to you on your upcoming scope and hope you get some good news. Keep me updated dude!

  12. ann August 1, 2012 at 11:17 am #

    Hey Justine,

    I am very sorry what you have gone through. Have you had big meals for a while? Or has anything special triggered this event? Anyhow, I wish you will hang in there and be strong and positive. I know sometimes it can be way harder to say than do it, we still need to wish for better. Keep us posted your meals and conditions, a lot of band of brothers here, I will keep praying for you and every UCers.

    Ann

  13. Steve August 1, 2012 at 11:45 am #

    Hi Justin…I am so sorry to hear of your story. I hope whatever you decide works for you. I am not a doctor so please take this with a grain of salt—but have you ever tried an all natural diet of fruits/vegetables? Specifically, a juicing fast of raw/organic produce?

    I ask because a few weeks ago I am certain I had a bit of a blockage. I was in severe pain that would shoot through my entire body, bloated, and frankly, never hungry. I would have sudden urges to vomit—all this when things seemed to be going great for me as well—but nothing was coming up. I juiced for a few days hoping that it would pass—and if it didn’t I knew the E.R. was next. Thankfully, it did.

    I am suggesting it because it sounds as if the doctors said you are out of options. If you are interested, reply back to me here or look up and contact David Klein. He may be of help to you. Again, you have to do whatever is best for you and I hope whatever it is brings you good health. All the best, Steve

  14. shelly in maine August 1, 2012 at 2:40 pm #

    Hi Justin,
    Hope things are looking up a bit for you. Hopefully the remicade will work and get you back on track and back in the UC driver’s seat!
    Hang in there. Good luck. Shelly :-)

  15. Bree August 2, 2012 at 4:37 pm #

    My dad has the exact same thing ! The doctors said they didn’t think he would make it but he’s coming along just fine ! Keep the faith and hope everything works out for you !

  16. Justin
    Justin August 6, 2012 at 5:54 am #

    Hello all! First I want to thank each of you for giving me advice and making this stressful time much easier for me. Km sorry i didn’t get back to each one of you personally but i will . I had a problem with my hand because the 2 IV’s in there both collapsed and made my hand and arm swell beyond use so it’s been hard to write. Well so here is how the story goes so far. They took too long to get the test results back for the remicade approval and my megacolon got too angry. Something just didn’t feel right Friday morning and i knew something was very wrong. I told the nurse and they had me xrayed again. After a few hours the results came back along with the surgical team and G. I. docs. Now my colon was 11.75 cm and was pretty much beyond saving. They recommend surhavgery that night or the following morning. I chose to have it Saturday morning. It was most definitely brutal and life changing. Had to have 2 transfusions fduring the surgery due to the colon falling apart as they removed it. When. I woke up I was definitely not the same as I used to be lol. It’s been about a day

    • Bev August 6, 2012 at 9:29 pm #

      OMFG!! Justin…I hope you feel so much better now that that NASTY colon is out of there, my friend. I also hope you experience as little bullshit as possible.

      Things are going to be ‘different’ now, don’t you think? If anyone can go forth in the future, and kick some ass, you can!! I don’t know why I’m saying all of this at this point. I just feel like you are very strong, and rational, and that you will handle all of this just fine. Perhaps, you can help others down the road…shit…I know you can and will!! For the time being, tho, never mind that…

      You are THE MAN Justin!!

      For now, just think about yourself. Take care of YOU. It will take some time, I’m sure. We are all thinking about you.

      Your friend,
      Bev…I feel like I know you so well and we’ve never even met!! You will be great now. I always think about surgery and how I will deal with it and how it will change my life, should it happen.

      • Justin
        Justin August 7, 2012 at 1:19 am #

        Hey Bev! So good to hear from you! Sorry its taken so long to write days are so hectic! There has been lots of problems after the surgery. Both my Arms and hands are swollen from collapsed veins from IV’s they are having a hard time finding a place to even do blood work. It’s been extremely painful as well. They people who have had the surgery who say it’s hard definitely weren’t lying lol. And they are trying to hurry up and kick me out. They are cutting the pain meds out and saying i need to be ready to leave in a few days it’s crazy! They took so lomg dragging their feet and now they want to speed it up. Im not lie its been hard to cope with everything n with really strong family support. But i know better attitude equals better recovery lol. But i just wanted to thank you for everything! I get so much motivation and info and advise! I will definitely keep in touch and let you know how everything progresses!

        • Bev August 7, 2012 at 6:31 am #

          Right on Justin.

          Figures that they want you outta there fast, now. Nothing like making you feel ‘special’, right? Assholes.

          I know you’ll be alright. I just know it. It’s going to take time before you feel ‘right’, but it will happen for sure. It’s easy to say have a positive attitude when you’ve just had life changing surgery. Don’t be surprised if you get a bit down in the dumps. That can happen after any surgery. It screws with your body, and your head.

          Get tons of rest…and, soon, you’ll be eating what you want…with no worries…at least that’s what ‘they’ say!!

          Cheers,
          bev

  17. Steve August 6, 2012 at 10:15 pm #

    Gosh Justin. I hope you can forgive my silly post above. I read your story but somehow missed the section where you were already in the hospital. I don’t know how that happened—I blame lack of sleep but it is neither here nor there. I am just happy you are hanging in there. I can’t imagine what any of it is like—brutal as you said sounds like an understatement(if I ever have to go through such a thing, I’ll remember you and others here and also to shave where they are putting IVs—but would definitely love to hear more from you in the future. I second pretty much everything Bev said too. I don’t know why…but I get the feeling you can kick some ass too. Let us now how are you are in time and be well! Steve

    • Justin
      Justin August 7, 2012 at 2:02 am #

      Hey Steve it’s good to hear from you man! Im glad you wrote. Yeah it’s been chaotic over here. I’m ready for the pain to be over with! The thing that freaks me out about the surgery the most right now is the cut they made and they didn’t sew or staple it shut it’s just a open wound. It’s pretty gnarly. I like to do a rubiks cube while lay in the hospital bed to help relax a little and I keep dropping the cube right on the fresh cut lol! But man i can’t wait til its healed up a little more, and all the drama is over! And next time I come true. The hospital im getting a full body wax! Freaking got tape everywhere.

      • Bev August 7, 2012 at 6:33 am #

        LOL…a full body wax! Yeah, you don’t think of that before hand, do ya?

        • Steve August 7, 2012 at 8:35 am #

          I ended up needing to get an IV replaced because the tape would not stick…I’m not related to Bigfoot but I am sure that is what you are picturing…which was no big deal but still. I was sitting there trying to just get through it. Not have more and more tape stuck to my arm which was going to be a pain to get off. The nurse also didn’t warn me that potassium injections burn and of course, it hit me pretty good. After the fact she says, “I can turn it down if you want?” and I was use to by that time so whatevs. :) Mind you I am rather quiet so I’m feeling this burning sensation and wondering if it is a bad reaction. The debate in my head had to be a good laugh.

          All nothing compared to your stuff and I’m sharing to hopefully give you one. I can’t attest to any open wounds but I hope you heal up soon and find ways to occupy your time. Do your doctors know your course of treatment and how long you’ll be there?

      • Bev August 11, 2012 at 1:34 pm #

        Hi Justin!

        How goes it? Are you feeling better? Did you read up on that internal resevoir thing called BCIR?

        If not, read about it online. It makes me feel like I at least have a good option, should I ever require surgery in the future. I started my UC with proctitis, so my rectum is the most damaged, I figure. This procedure sounds like it’s right up our alley…no pun…really…lol

        I really hope you’re feeling good. You are such a sweet guy, and hell, you deserve it!

        Cheers:)

  18. Catherine August 11, 2012 at 2:01 pm #

    Wow- that was fast. Hope they gave you some good pain killers. My daughter got Dilaudid. She only used it 1 day once she got home from the hospital. Believe it or not- you will feel better very soon. And you will feel excellent in a few weeks. When daughter got her jpouch surgery she had a problem with veins, too. One night her IV failed and no one could get the new IV in: not 4 nurses, the Rapid Response Team, nor 2 doctors, even though they got an ultra sound to try to find a vein. She ended up getting a Pick Line in the Angiogram Dept. I know you will be feeling great soon. Just except the fact it takes a few weeks. Hope you don’t get a surprise like I just got today- a letter from a collection agency asking for a check for $20,000. Would’ve been nice if the Hospital let us know about the bill before sending it off to collection- not that I have an extra $20,000 laying around. I wish you better luck.

  19. UC Family Boy
    Uc family boy August 14, 2012 at 1:18 pm #

    Hey Justin,
    Sorry it’s taken me awhile to reply. I read your last update but to be honest made me feel down in the dumps I didn’t know what to write. but I’m glad your being strong and out the other end, happy recovery. Let us know how your going when you get a chance.x

  20. Bev August 16, 2012 at 9:35 am #

    How are you Justin?

    • Justin
      Justin November 5, 2012 at 8:35 pm #

      Hey bev! Sorry its taken me so long to write. Its been a nightmare since the surgery. Complication after complication. I was in that damn hospital for almost 4 months. When i finally got to go home i was only 94 pounds. It’s been brutal. Every week some new problem comes up so im in the doctors or er at least once a week. Hopefully will start doing some healing soon lol. How have ypu been? I hope all is well! Cant wait to hear from ya :-)

      • joanna November 6, 2012 at 7:10 am #

        geez justin. i’m so sorry you are so miserable. this disease really sucks- even when you think it’s gone because the colon is out, there’s a host of new problems you can get. i really hope you can get things under control.

        i feel your pain about the weight. i’m only 89 lbs right now and am also suffering from an allergic reaction to one of my infusions. been covered in hives for over a week. i don’t even feel like leaving the house to vote ahhhh

        things will get better.

  21. Sara November 20, 2012 at 11:46 am #

    Hi Justin,
    I just found this website about 3 days ago, and have been reading through people’s stories, I just finished reading yours and felt that I must reply. I just wanted to wish you well and let you know that you are in the thoughts and prays of everyone using this website. I truly hope you get on the road to recovery soon. Sending you positive vibes…
    Hugs, Sara

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