Ulcerative Colitis Tips


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UPDATE: 1 Month After Colon Removal Surgery

I was diagnosed with Ulcerative Colitis on January 14th and was there for 11 days. In that time they put me on Prednisone and Remicade then I went home. Got a second round of Remicade 2 weeks later. I had to come back to the hospital on Feb 15 because the second round of Remicade wasn’t working and the SCD diet wasn’t working either and I wasn’t seeing any improvement. When I went back into the hospital, they gave me a stronger dose of Remicade and I was back on the Prednisone for a week to see if that helped. No improvement after the week and so the only thing left to do was to have surgery to take out my colon. As they were taking my colon out, it was literally falling apart in the surgeons hands, so they got me in there just in time (after they pushed me back 2 days from when i was supposed to have the surgery).

So here is my update:

So….It has been 1 month since my surgery and I am feeling great. Still not fully recovered, waiting for my incisions to heal all the way and I’m still kind of walking around with a hunch-back but overall things are going well. I can drive now which is great because now I have some freedom finally. I stopped taking the Percocet (pain pill) like a week and a half after my surgery and yesterday was the last day of my Prednisone taper!! The only things that I am taking now are multi vitamins and an Iron pill. Woo Hoo!! I have pretty much gotten used to my Ileostomy, I mean as much as someone can get used to seeing their small intestine coming out of their stomach with a bag attached to it, so that is going fine. I am able to eat whatever I want which is seriously amazing after going through about 2 and a half months of eating pretty much nothing but IV liquids and nutrition through my PICC line in the hospital. I have eaten In’N Out, Breakfast Burritos, Chicken Burritos, Chicken Wings, Pepperoni Pizza, Ribs, Sushi, Meatballs, Pasta, Sandwiches…just to name a few.  Everything goes down just fine and eventually comes out and goes into my bag, most of the time without me even knowing.  Sometimes I feel a little pressure and then I know stuff is about to come out, and it’s kind of cool to watch it because it comes out like those Play-Do kits that we used to have when we were little. Anyways, that’s kind of gross, but things are going well to say the least now that my infected colon is out of my body. The good thing about my situation is that it happened after I finished my last semester in college so it didn’t get in the way of any of my school. I will be graduating in May from Cal State San Marcos. My journey is far from over though because I still need to have 2 more surgeries. The next surgery will be after my graduation in late May and then my final surgery will be in late August most likely. After t he last surgery it will be a couple of months until I am more back to normal, which will be great because hopefully I will be able to start playing soccer and surfing as soon as possible. Playing soccer is what I miss the most. I have been playing since I was 4 and I am 22 now. My goal was to play professional soccer, as many of my friends from my club soccer days are now playing professionally in the MLS, but that has been put on hold because of this situation I find myself in. I don’t want to call it an unfortunate situation, because getting this disease and going through the things I have been through in such a short amount of time have really made me look at the world differently. This whole situation has opened my eyes to see what things are really important in life and what things aren’t. I’ve found out that complaining about the disease gets you nowhere and you have to find ways to stay positive, because if you can’t find ways to do that, then you’ll just get mo re and more depressed. The thing that is hardest for me right now is that I am really bored because I can’t do much except sit at home and go on walks. I have been the poster child for healthy and athletic my entire life so being detoured with this has been a struggle. I can’t go and play soccer or work out yet because I haven’t fully healed, so that has been the hardest thing for me, boredom. Now that I can drive though has helped a little bit because I can go places with my friends if they aren’t able to pick me up. For a while though, it hurt to even ride in a car because all of the bumps in the road would be painful. So I have a car, but I have no real destinations because I can’t do much when I get anywhere, haha. Maybe I should take up mini golf or something, that’s pretty easy. Or I can go to the bowling alley and use the little ramp thingy to put my ball on and roll it down since I can’t throw the ball myself. Oh well, I’ll think of something.

That is my update for now, I hope everyone is doing well and finding something that works for them!

-Curtis

Curtis’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details




19 Responses to UPDATE: 1 Month After Colon Removal Surgery

  1. Allyson March 29, 2011 at 10:13 am #

    Congratulations Curtis!! I am really happy to hear you are doing so well and especially, getting to eat more!! Isn’t it great?! Today is my two week takedown surgery and I’m starting to feel better – this recovery is a lot different from the first surgery but in about a month and a half I should be out there living life again! If you ever want to chat, you can email me: eickmeier.7@gmail.com

    I am so happy I decided to have surgery and feel in a way, lucky, that Remicade and Prednisone weren’t working – no more long term meds or side effects to worry about!! I wish you the best of luck with this recovery and will keep you in my prayers for a successful and complication free turn out! I would say that having a bag of your own poop attached to you is quite the humbling experience and UC altogether has made me a better person. I am sure you feel the same way. I hope you make it to the MLS! Good luck my friend :)

  2. Sara March 29, 2011 at 4:03 pm #

    I am so glad to read that you are doing so well. Right now my mom is in the hospital, just got a PICC line in today, she hasn’t had any food for 5 days, brutal! She is also on Remicade and Predisone but nothing seems to be working. She’ll need the surgery too but they don’t feel like she is strong enough or in good enough health right now. How often do you change your bag (sorry I don’t know if that’s what word I should use for it) I love reading these stories because I have lots of worry on my mind for my mom right now! All the best, keep us updated!

  3. Sara March 29, 2011 at 6:50 pm #

    For the first night my mom was at the hospital, they were doing xrays and tests every hour because they were worried about her colon bursting, just like you. Do you just have a few small incisions or did they have to do a big cut down your stomach? They said they might have to do that, it all depends I guess. My mom has had a lot of health issues, and she has lost 25 pounds in a month, so I think that is why they are a bit hesistant on the surgery with her. How long after the surgery were in your in hospital? Do you find it easy to wear your normal clothes, and how is sleeping at night with the bag? Thanks a lot for answering, it’s great to hear from those who have been in this situation.

  4. Curtis March 29, 2011 at 7:26 pm #

    Allyson- Thanks for responding! It’s nice to hear from people who have had the surgery as well. How is the recovery of the last surgery different? I have to have 3 surgeries instead of 2 because that’s how bad my colon was, so I have 2 more. I am happy to go the surgery route as well, even though it wasn’t a choice really. It was either that or have my colon burst inside of me which definitely would not have been very pleasant. I heard that it takes a longer time to start eating more things because you have to slowly introduce foods so that it stretches the pouch out so it can hold more, and that you have more bowel movements at first but that goes down as well.

    Sara- The PICC line will help with the strength for sure. They said that I wasn’t strong enough either so that’s why they gave me the PICC line, then I had to wait like a week until they felt comfortable doing the surgery. I know that my age helped with their confidence in doing the surgery because they said since I’m younger that I would be able to withstand more I guess.
    Don’t worry, you used the right terminology with the bag, haha. I say “change the bag” too, I don’t know if there’s any other way to say it. I change it every 4-5 days and I empty it about 5-6 times in a 24 hour period, and its weird because you have no urge to go to the bathroom…it just goes! It takes some getting used to, but the nurses that I had were really helpful and I actually changed my bag all by myself the very first time in the hospital (with the nurse giving me step by step instructions). I hope everything works out with you and your mother.

    • Joan April 8, 2012 at 7:13 am #

      Hi Curtis,
      Just wondering if extreme stress played any part in your UC flareups. My niece is going to be put on Remicade and is being told that colon surgery is the next step. She is under an extreme amount of Psychological stress that doctors are not aware of. Let me know what you think.
      Thanks!

  5. Linda March 29, 2011 at 7:30 pm #

    Hi Curtis and Allyson, I’m glad things worked out for you both with the surgery. How scary it must have for you Curtis to have been told your colon was falling apart and that the surgery basically saved your life. My son is 6 years old with UC, and, the idea of surgery has been brought up several times from his doctor in the past. Luckily, he is doing much better now and we are always praying that he will headed toward remission. He has been doing SCD for over 6 months, and it is making a big difference, although I know this is not the case with everyone. We recently stopped his Remicade because it was only working for 3 weeks at a time and he has had 7 treatments. Still trying to break him from the Prednisone dependency and going to see another doctor soon. I am always wondering if the Imuran is really making a difference or not also. Even though I am scared for my son to face surgery since he is so, so, young, I am glad to hear that the surgery does work for some people and that you both are doing much better. take care. :-)

  6. Casey March 29, 2011 at 9:19 pm #

    Curtis, thank you so much for sharing your story. I appreciate the updates as well! My son (12yrs) is excited and counting down the days until his surgery in May. I am going to have him read this update tomorrow.

  7. Curtis March 29, 2011 at 9:53 pm #

    Sara- I have 3 small incisions because they did it laparoscopically. I lost about 35 pounds (was 160 and I was down as low as 121 at one point). I had the surgery on a Saturday and was released the following Friday. The first couple of nights were rough trying to sleep because laying flat is just impossible because of the pain from the surgery. My dad had to get his old walker (he’s not that old, he has just had 2 hip replacements, haha) and he put the walker under my bed to prop it up like the hospital beds so it didn’t hurt to sleep for the first 4-5 nights which was very helpful. I have been wearing sweatpants mostly because they fit better. Since I have lost so much weight, I don’t really fit into my jeans or shorts so I’ve just been wearing sweatpants, and it’s been fine for me! One of the incisions is about 3 inches under my belly button and that one still isn’t fully healed yet. I have worn jeans though with a belt and it wasn’t bad at all, they just kept falling down, haha. I started off by wearing button up shirts because its hard to lift your arms over your head at first but now I can wear t shirts and whatever. As for sleeping, I don’t notice it really at all. I sleep on my back and now I can sleep on my sides too. It took a couple of weeks to be able to sleep on my side though because its too painful at first, so just stick to your back for a couple of weeks.

    Hope this helps! Let me know if you guys have any more questions.

  8. Sara March 30, 2011 at 11:28 am #

    Thanks a lot Curtis. When I came here today, they had her off the TPN, because she has bacteria in her blood and they think that the TPN was feeding it. So now we are back to them giving her regular crappy hospital food that makes her fun constantly, not even making it to the commode that is right beside her bed. Not sure how long it will take for this bacteria to clear up, but I hope something happens soon! The one doctor said something about not doing surgery, and then another said he thinks they still should… there is noway she can go back home without it… 20+ bowel movements a day and in so much pain… she will wither away to nothing! Alright, that’s my little rant, as I sit in her hospital room just wishing I could heal her! Hope tomorrow is a day of good news!

  9. Dawn March 30, 2011 at 12:05 pm #

    So great to read this update, Curtis! I am eight days out from my surgery today. I have to do three steps, like you, because of my long term steroid use. I’m happy to see you are doing so well at one month after surgery. Definitely gives me something to look forward to. Even though I still have a lot of recovering ahead of me, I would not trade this for life with UC! Good luck with all you take on, I know you will do well. Your attitude is amazing. :-)

  10. Allyson April 1, 2011 at 9:44 am #

    Well keep being positive – it is going to get you very far! These struggles make you a stronger person :) Recovery from the last step is very different in a lot of different ways. It isn’t as major as the first one since my body has already adjusted to not having a colon. So I wasn’t as dehydrated as I was with the first step. The pain is a lot different. It only stuck around for about a week and it was a lot of pressure/gas cramps. It wasn’t fun :( Then there is a lot of urgency and BM. I don’t sleep through out the night so it reminds me a lot of UC. I am slowly introducing foods like you mentioned. I tried a tiny bit of salad yesterday and definitely paid for it. But like everything else, all I can do is wait and give it time. I hope you are able to put some more of your weight back on! I’ve struggled with weight also – went from 103 to 79 lbs. I weigh 90 today so I’m moving on up! You will too! :)

  11. UCer April 18, 2011 at 10:32 am #

    you know as much as i’m happy for you and admiring your positive attitude, your story has freaked the living hell out of me!!!
    I’ve been diagnised last january and been taking mesalazine and prednisone ever since. progress was slow at first, then things got better and i started to pass poo like normal humans again; however, 10 days ago the symptoms attacked back! They’re not as bad as before but the gasses; the urge, the mucous, the fatigue, the weird noises and the pain are back ( thank god it’s blood free though) i couldn’t go see a doctor at first due to the crappy political conditions here in Bahrain and i wasn’t even able to fly to KSA to see my original docotr because of those situations!!! Luckily, however, i’m finally able to go this wednsday.
    I don’t want to live with a waste bag attached to my body for the rest of my life, it’s too difficult to accept. I don’t know how you guys do it! I’ve accepted my illness since day one but i’m losing it every time i have to use the toilet these days…happy for all of you and hoping for your prayers for me.

    Regards :)

  12. Curtis April 19, 2011 at 10:09 pm #

    The thing about my condition was that none of the medications worked for me because my colon was so bad. Therefore, surgery was the ONLY option. The bag is only temporary for in between each surgery. After the final surgery, I will be “connected” all the way through and won’t have the bag anymore. I hope that you find something that works for you. This is a terrible disease, but to be honest, I am kind of glad that my condition forced me to have surgery right away, because I don’t know how everyone lives with this disease and all of the medications and so many sacrifices they have to make diet wise and in their everyday life as well. I hope we can all get better!

    • Heidi April 20, 2012 at 6:23 pm #

      I have exactly what you had – unresponsive severe ulcerative colitis. Nothing works and surgery is my last resort. I go in tomorrow for my first of 3 surgeries. Thank you for sharing your story, it has given me hope, happiness, and a bit of relief to my anxiety about this whole process…. ps, those foods you listed sound so good, I can’t wait to be able to EAT again!

      30 year old female
      Diagnosed in August 2011

  13. Reg February 10, 2012 at 10:43 am #

    This is just the start of your new life.
    You can do anything you want.
    I had UC for 8 years before surgery in 1974, I am 66 on Sunday.
    You can play any sport you want. I played rugby from age 30 until I was 47.
    I have done the 4 day hike to Maccu Piccu including overnight camping.
    I have been on rugby tours to Montreal & St Louis ( which entailed much drinking & eating ) & played for the veteran team aged 57.
    I have swum dived from a 10m high board, gone sledging, cycled, climbed Ben Nevis, holidayed in Sri Lanka, Madagascar, St Lucia when it has been really hot.
    Although I am English & based in Yorkshire I am sure you Yanks are capable of much more than we staid Limeys.

  14. Clayton April 20, 2012 at 7:25 pm #

    Glad to hear this, how long were u in the hospital after surgery? I just had surgery and i was really really sick before, im just passed my second week in the hospital, i had problems with an abstruction unfortonently but now im on an upturn and should be out in a couple days,

  15. Doug May 27, 2012 at 6:06 pm #

    Hi I’m Doug, English, 63 years old and I’ve had UC for 3 years (it started 3 months after I stopped smoking!) Well the various pills wern’t working and so after a really bad flare up in Feb 2012 I ended up spending 4 days in hospital. After seeing the consultant I said ‘look the pills aren’t working, what about surgery? because I cannot go on living like this as all my life I’ve been as fit as a butchers dog with only approximately 10 odd days off in the whole of my working career of 45 years’. At this time I mentioned that I would like an Ileo-Anal pouch once my colon was removed and could it be done in one hit? Yes it could be done in one operation provided I was fit enough at the time of operation and so on 30th April this year they removed the whole colon and formed the J? pouch plus gave me a reversable stoma. I felt ‘beaten up’ for the following few days but am now gradually returning back to health although I had a small complication of an internal abcess behind the new internal pouch. I am at one with Curtis’s comments earlier of the inherent frustration at not being able to get on with the old activities until fully healed. I really like Curtis’s American attitude of ‘can do’ as I think along much the same lines and prefer to deal with the world as it is and not as I might wish it to be. Oh and finaly the National Health Staff in the hospital were absolutly brilliant although the food was ****, but even thats a positive as I’m now a svelt 13st 6lb LOL.

  16. Ivan September 29, 2013 at 6:20 am #

    Hey i have a colonoscopy tomorrow and i dont know im just so worried and nervous to hear whats going. And im an athlete also i play soccer i have been playing since as long as i can remember. I love the sport so much its my life, and what im getting to is that IF i have colitis about how long would i be out of soccer for? by the way your story is amazing im glad your doing better (:

  17. Alexa August 5, 2016 at 10:26 am #

    Is there an update on how Curtis is doing now in 2016?

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