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One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Update on 20 Year Old J Pouch Surgery- 6 Days Out of Surgery

 

baseball player KyleMeet Kyle:

My name is Kyle Thomas, and I’m 20 years young. I love sports, food, women and life. Big Patriots and Red Sox fan. I love to lift weights and play baseball, and I’m currently going to school for medical imaging.

Some more about Kyle:

I’m from Rhode Island, sports and music are both my hobbies, along with Nintendo. This is my second time posting here on the site and I’d like to just update my story after having surgery for my ulcerative colitis.

Symptoms…

I have NO symptoms because I am just 6 days out of surgery for my total proctolectomy and temporary ileostomy! Can’t wait to be fully healed!

My After Surgery Update:

Diagnosed with UC in 2010, dabbled with medications for 3 years and nothing worked other than prednisone. Asacol, remicade, imuran, change of diet, the whole nine yards, nothing worked. So, after my most recent sigmoidoscopy My GI doctor recommended that I go through with surgery, which I had been thinking about for a while since my symptoms had began to worsen. This past Friday, on December 14th at 12:00 pm I went in for the first of my two j pouch surgeries. They removed my entire colon and created the j pouch, while also making a diverting loop ileostomy. That night was extremely hard and painful, but thankfully the PCA pump really helped manage that pain.

I was walking around the next day and by Monday I was feeling pretty good.

They discharged me on Tuesday, December 19th because I was doing so well. My ostomy output was great, I was able to empty it and change it myself and also being youthful was on my side. My surgeon said that my abdominal wall was so thick that it was hard for him to get through to operate. That was a huge ego booster.

Anyway, I am home for Christmas now and I am extremely happy. Each day I am in less and less pain, and I am so much happier to know that my disease is gone. I think that is the biggest difference. I want to go out now and be more active like I used to be before having Ulcerative Colitis. I feel like I have been reborn again. If anyone reading this has colitis and is contemplating surgery, definitely go through with it. I was scared at first because I realize the changes that come with it but it goes by fast and before you know it you’re in recovery. You will get your life back as I feel I have already.

Medications I’m currently taking:

20 mg prednisone (tapering off by 5 mg every 3 days)
Acetaminophine

written by Kyle Thomas

submitted in the colitis venting area




j-pouch, surgery

32 Responses to Update on 20 Year Old J Pouch Surgery- 6 Days Out of Surgery

  1. bev December 24, 2012 at 3:31 pm #

    I love this story Kyle!!

    Happiness awaits you now. Life is going to be fab from here on in!!

    Happy holidays to you:)

    • Kyle December 29, 2012 at 9:51 pm #

      Happiness is all that I’ve wanted since my diagnosis and I finally have it back! Thanks!

  2. K December 25, 2012 at 8:42 am #

    What a wonderful gift for you this Christmas, Kyle.
    I have had an ileostomy for almost 40 years, and I still consider it a miracle.
    UC is horrible, and I and now you are free of it.

    • Kyle December 29, 2012 at 9:54 pm #

      I was very hesitant at first especially with the ileostomy, but you’re absolutely right. It is without a doubt a miracle and helped put things in perspective for my whole family this Christmas-which was my best one yet thanks to the surgery and my immediately feeling healthier.

      • Din February 13, 2013 at 1:51 pm #

        Hello Kyle,

        I’m Din, 22 years old, and I also had my colectomy and construction of an ileostomy last December, due to a severe worsening of my UC which resulted in a septic shock and systems failure. The surgery was for me not a christmas gift, but a Chanuka miracle, as I am from Israel (these two occasions take place approximately at the same time). It’s quite cheerful to see that people all over the world face the same troubles and together also manage to overcome them.

  3. joanna December 28, 2012 at 10:03 pm #

    hey kyle. i’m so happy you are happy now! must be nice not having UC anymore. i hope you continue to get better and your new jpouch treats you well.

    • Kyle December 29, 2012 at 9:56 pm #

      Thank you Joanna. I am extremely happy now and I haven’t even had the takedown yet haha. As I’m sure you can agree patients with IBD are troopers and very tough people, so this homestretch is just another challenge I’m more than willing to conquer and that having UC has well prepared me for.

  4. Mason December 29, 2012 at 9:43 am #

    Hey Kyle! That’s awesome! I’m also a young dude fresh out of surgery, so I know how liberating this can feel! I had mine about 2 months ago, and getting second surgery in April. I’ll be sure to let you know how that one goes! Happy new year!

    • Kyle December 29, 2012 at 9:59 pm #

      Hey Mason I appreciate the comment and update on your story. Are you keeping the bag for that time because of choice or because your surgeon recommended it? Just curious. Happy to hear you’re doing well and free of UC and have a great New Year as well!

      • Mason December 29, 2012 at 10:02 pm #

        I didn’t have a choice, they just sized me up and cut me open lol. It’s not too bad really, could be a lot worse. I’m glad I don’t need it long term though (knock on wood).

  5. Marq Rich
    marq December 29, 2012 at 8:04 pm #

    hey kyle as u may know my story is on the front page and let me tell u i understand every thing your going through.. i had my 2nd surgery in june and i havent felt so good in a while, no more colitis. at first your gonna go about 6 times a day and waking up in the middle of the night but it will slow up. best decision i ever made

    • Kyle December 29, 2012 at 10:04 pm #

      Hey Marq-

      It feels so good to not have the disease anymore. While I can’t wait to have the takedown, I am enjoying the feeling of being healthy and not having any UC symptoms. I’ve been told 3-6 times a day will be the normal amount once I’m all done with the 2nd surgery, which will be like heaven for me after going 20+ times a day during a bad flare. And I agree, this was definitely the best decision I’ve made too

  6. Kyle December 29, 2012 at 9:42 pm #

    Thank you everybody for all of positive reinforcement! I actually was just discharged after being admitted back to the hospital for a few days because I needed to get an abscess drained that was causing a 104 fever. But, my doctor told me this was very common, especially for patients who were steroid dependent in controlling their disease. Crossing my fingers for no more complications! Happy New Year everybody and good health to all!

  7. Emie
    Emie January 9, 2013 at 1:20 pm #

    Hey Kyle,
    I had my first surgery on the 19th of December…..there was no comments from my dr on my abdominal wall being super hard but whatever…hahahaha. My story is pretty similar to yours except I had it for about 9 years. I have done very well so far and am very excited for my takedown surgery which should be in early March. Best of luck to you in your recovery!!
    Emie

  8. Will February 4, 2013 at 8:44 am #

    Hey Kyle, I am 24 and thinking about having the surgery. I was hoping you could tell me some about the healing time and process you went through after the surgery. I’ve just found out about this site and I have to say it feels so good to know there are so many ppl like me!!

    • Kyle February 5, 2013 at 9:28 am #

      Hey Will,

      My process began with meeting my surgeon and making sure he was top notch (which he definitely was). After that, I met with a nurse practitioner to go over ostomy care, what the procedure entailed and how to live life in the time between surgeries. Then, I had my pre admission testing of my blood pressure, medical history, EKG and a few other short tests. Then the big day. I had my colon removed and j pouch constructed on December 14th 2012. Before i went in, a man came in to shave my stomach (they had me wash with anti bacterial soap the night and morning before). Then, a nurse gave me my IV and other nurses from surgical team came in frequently just to talk or ask if I had any questions until my surgeon was ready. I was then given some relaxation anesthesia which felt really nice and they wheeled me into the operating room. They then lifted (with my help) me to the operating table and gave me the rest of my anesthesia and i was out. I woke up 9 hours later in the recovery room, feeling VERY groggy but somehow much better since my colon was no longer inside me and causing me to be sick. It’s safe to say the change was immediate. Pain medication of course helped too. Out of recovery, i was brought to my room where I woke up some more, and then the pain kicks in a bit. the first night I could not get up on my own because of my abdominal pain. But, with nurses helping I was able to just stand up for a minute and then sit on my bed. they want you to do this ASAP so you don’t get any clotting. That was all I did for that night. They also have you sleep with these special compressing boots that squeeze your legs to promote blood flow. The difference between that first night and the next day was amazing. I was able to get up and walk around and eat some ice chips. And from then on the gains were huge from day to day. I ended up only staying 4 nights and 5 days there before coming home. I was eating solid food and taking care of my ostomy by around day 3. After being home, the pain persisted for probably 4 weeks or so, which I controlled with oral pain medication. Eventually I didn’t even need that and now as I type this, I feel 100%. No pain, no nothing. I did have an abscess in my pelvis, which is a collection of fluid and is very common. That was about 2 weeks out of surgery and it put me back in the hospital for another 3 days so they could go in and drain it but that was a minor setback and I’ve been perfect since. It takes a while to get used to sleeping, because you’ll have to wake up numerous times at night to empty your ostomy. And be VERY careful about bending and moving around for the first few weeks. I’m now almost 8 weeks out, and my takedown surgery is this thursday! I cannot wait to finish up this process and be fully better. And about the j pouch- you will probably start to pass some mucus after the first week or so. Don’t be nervous because it surprisingly feels a lot like normal. Also, you said you’re 24 so being young definitely helps. I just turned 21 and I know that my youth has helped me recover quickly. SOrry this is such a long comment but I wanted to be detailed. If you have any other questions feel free to email me at kyle_thomas1992@yahoo.com. Good Luck if you go through it! It was the best decision I’ve ever made for myself.

      • Barb February 20, 2013 at 11:23 am #

        Hi Kyle,

        Thanks so much for all the details. So very helpful. I am thinking of the surgery. I have been battling for 14 years with UC and I am in a flare yet again back on steroids 40mg and found out I am now steroid dependent. My doctor wants to start me on Imuran in a few weeks. Honestly I am at my wits end if this doesn’t put in remission I am going to talk to her about the surgery.

        I am just wondering if you can keep us updated on what happens after the take down. Will you be able to go to the bathroom in the toilet again? Are you able to eat what you want?

        Thanks
        Barb

        • Kyle February 21, 2013 at 8:37 am #

          Barb,

          I’m so glad you asked for my advice! About 3 months ago I was in the same exact position you are now. I had become steroid dependent over my 2 and a half years with UC. Starting out at 40mg and tapering down to 10 or 5mg only to flare up again. I had tried remicade and asacol and imuran, none of which worked (but give imuran a shot because everyone is different). I tried imuran and it only made me nauseous unfortunately. It was after my failed attempt with asacol followed by a sigmoidoscopy in which a polyp was found that I made my decision along with my GI doctor to go through with surgery. I had heard nothing but positive outcomes and happy people. And you gotta figure hey if I can deal with colitis, and in your case for 14 years, then 3 months or so worth of surgeyr and recovery should be no problem. So i went through with it. I just had my take down on february 8th so I am two weeks out from that and all I can say is that this was the best decision I have ever made for myself and in my life. All doubts and regrets i had prior are GONE. I highly recommend going through with it, especially if you are steroid dependent because they are horrible for your body. Sure, the pain from surgery is tough, but nowhere near as tough as dealing with colitis day in and day out. And to answer your question about the bathroom, yes I can go to the bathroom just fine now and it feels almost the same as with a colon. I am still fairly new to using my j pouch but I would say I’ve already warmed up to it. I’ve been going around 8-10 times a day, but it’s getting thicker and less frequent every day, feeling more and more normal and it’s truly amazing. I’ve forgotten that I do not even have a colon because it feels so normal! And with due time I know the j pouch will learn to adjust and expand and absorb more water as well, contributing to even more normalcy in going to the bathroom. All in all, I believe surgery is the way to go and I wish I had made the decision earlier, but it certainly was not an easy one to make which is why I waited it out for a few years. Please let me know with a comment or a post on what you decide to do and good luck!! Any other questions you have please do not hesitate to ask me.

          -Kyle

          • Barb February 21, 2013 at 9:51 am #

            Ok by take down do you mean they reverse the bag? What exactly is the jpouch?

      • Michelle July 2, 2013 at 4:14 pm #

        Hi Kyle,
        I am scheduled for my surgery in 2 wks for proctocolectomy with j-pouch. The reason I am writing to you is because I live in Rhode Island and was wondering what hospital you use and surgeon (if you don’t mind sharing). I can give you my email if you rather tell me that way. You story is very inspiring and I hope to have the same positive expirence and energy.

        Thanks
        Michelle

        • Kyle July 2, 2013 at 4:26 pm #

          Hi Michelle, I had my surgery done at the Miriam Hospital and my surgeon’s name is Dr. Vrees. He is part of RI colorectal and works with Dr. Schecter and Dr. Klipfel. They are all excellent and I am very thankful to have been in their care. I wish you the best of luck and feel free to email me with any questions.

          • Michelle July 3, 2013 at 12:07 pm #

            Thanks for your response. Mine will be at Rhode Island with Dr. Nish Shah. So honestly, how was having the ileostomy and how long did you have it.

        • Kyle July 9, 2013 at 6:08 am #

          The ileostomy was not fun, but I learned to deal with it after a while. Sleeping was tough, and I emptied it a lot and had to watch what I ate. Changing it was the worst, but the thought of knowing it was temporary helped me to stay positive. I had mine for 2 months and I had my reversal about 5 months ago, and now I am feeling fantastic. Even with the ileostomy, it was better than having colitis. No urgency or pain at all. You’ll do fine.

          • Michelle July 15, 2013 at 7:27 pm #

            Thanks for your positive feedback Kyle. I really wanted an honest experience about the ileostomy. You helped a lot.

            My surgery is in 2 days and I’m freaking out. How did you deal with this at such a young age? I’m much older than you and I’m in hysterics. I know this is saving my life but come on, this is too much.

            Hope you are still doing well with your recovery.

            Thanks for your support.
            Michelle

        • Kyle July 16, 2013 at 12:03 pm #

          Michelle,

          During these next couple of days just use your free time to reflect on any lessons you have learned while coping with the disease, and at the same time preparing yourself mentally to overcome this challenge before it even begins. If you can handle UC for however long you have, you can certainly make it through a surgery and recovery process of hopefully around 6 months. That’s the way I looked at it. Mental toughness is key. Your body will get weak in between operations, but listen to your doctors and nurses and do your best to maintain healthy eating habits and a healthy lifestyle and your body will be good to you in return.

          • Michelle August 7, 2013 at 8:34 am #

            Hi Kyle,
            It’s been 3 weeks since my first surgery and I’m feeling good. I ended up being in the hospital for 10 days due to some complications. You were right about the ileostomy, what a pain! I’m having issues with leakage and skin irritation. But like you said knowing its temporary helps.

            How is your j-pouch going and how are you feeling? My second surgery won’t probably be for another 6-7 wks.

            All in all I feel good and love feeling healthy and free of UC!

            Hope you are enjoying your summer.

            Michelle

  9. Mohammed February 18, 2013 at 10:47 am #

    Thank you so much Kyle for posting this update. I have been suffering with ulcerative Colitis for 4 years and just like you nothing has really worked except for prednisone. I have tries remicade antibiotics and I have recently started humira as a last resort drug, but I have already taken 30 infusions and it is not working. My doctor has suggested surgery to me multiple times in the past but I was so scared that I canceled. But after reading your story its given me hope and confidence that I can have my life back with this surgery. So thanks again Kyle and I wish you all the best in your recovery and health.

    • Kyle February 24, 2013 at 1:13 pm #

      Mohammed,

      I’m so glad that my post could help you out with your decision making. When I was first diagnosed, the thought of surgery made me very uncomfortable and it was the last thing I wanted to do. So, I experimented with all the different medications out there first, and after two years I had exhausted everything, surviving only the prednisone. I regret not doing the surgery earlier! It was definitely tough, but the thought of eventually being healthy again and colitis free was enough motivation and before I knew it, here I am, almost 11 weeks after the first surgery and I feel awesome. It was the best decision I’ve made in my life thus far. Best of luck to you and I look forward to hearing if you decide to go through with the operation.

      -Kyle

  10. Kyle February 21, 2013 at 10:15 am #

    Yes the take down is the reversal where they sew up your stoma so that food will pass through your intestines and out your butt, rather than out of your side and into an ileostomy bag. With j pouch surgeries, the entire colon is removed. Then, the surgeons construct a pouch in the shape of the letter J, out of the end of your small intestine and then sew it to your anal sphincter muscles. This pouch serves as a reservoir to hold your digested food before you get rid of it.

    • Barb February 22, 2013 at 8:51 am #

      Oh ok now it all making sense. Thank you for all your help. Now I know what I am up against. Puts my mind to ease a lot if you know a head of time what you are in stored for.

      I will keep you advised of my situation. Right now I am on the steroid 40mg fo 2 weeks then the Dr. wants to ween down and start the Imuran. Hopefully this will do the trick. But I am keeping my options open for the surgery.

      Thanks again Kyle you have been so helpful.

      • Kyle February 22, 2013 at 12:38 pm #

        Anytime, I hope everything works out well for you!

  11. Jackie April 8, 2013 at 11:37 am #

    I am a mom waiting for my son to come out of surgery. Found this site on Pinterest! Our son is 36years old and has had chron’s for 12years. The last few years have been rough on his overall health. And now since the 3big guns no longer work( remicade, humera, and cizmia.) he is under going surgery to remove his colon, and do an ileostomy. With high hopes to someday after healing be reversed. I will share your site with him. Good luck to you.

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