Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

J Pouch Take Down in 2 weeks, Need some Advice!

picture of kyleMeet Kyle:

My name is Kyle Thomas, I just turned 21 years old, had UC for 3 years. I love baseball and football, food and many other things. I lifeguard in the Summer and go to school year round for medical imaging (maybe i’ll be giving pouchograms in the future, like I just had myself recently). Anyway, I have posted on here a couple times about before surgery, after and now before the second surgery.

Some more about me:

I’m from Rhode Island so I love clam chowder, coffee milk and hot wieners. I can do the robot. I also really enjoy the beach and going out with my friends. I’d love to begin dating again once I’m fully recovered. Even with an ostomy currently I have more confidence than I did after dealing with UC every day. I’ve also used ample amount of my recovery time to learn how to play the guitar and I’m starting to make some serious progress!

Symptoms:

No more symptoms thanks to my surgery! I feel 99.9% normal again! (the .1% will be added once I lose my bag)

J Pouch Take Down in 2 weeks, Need some Advice!

Well, I had UC for 3 years and it was terrible. However my doctor and surgeon were very shocked at how well I masked my disease given the condition they found my colon to be in once they operated. My first surgery was on December 14th 2012 and I just recently had my pouchogram, which showed my pouch to be fully healed! So I am having my take down operation in roughly 2 weeks. Can anyone give me some input on the comparisons of this surgery and the initial colectomy and j pouch construction? What’s the pain level post surgery and how long? Hospital stay length? is the diet gradual (clears, soft foods then solids)? I am also very active so I am itching to get back into lifting weights and going running, but easing into it obviously. If someone can maybe give me a gauge of how long their doctor, or most doctors give you before lifting is allowed, that’d be great. I’m sure mine will tell me eventually when I see him and ask but I’m just anxious.

I’m also curious about the prep. When you go in, is your ostomy bag on? I would think so, I’m sure they take it off prior to their operating but after you’re knocked out. And, is there any other kind of bowel prep or just no eating and drinking the night before?

That’s basically i for my questions. Any and ALL responses are greatly appreciated. I am so incredibly excited to be able to take this final step in leading a normal life once again and I highly encourage anyone who is having no luck with medication and in constant pain to go through with a j pouch operation. UC is horrible and nobody should have to deal with it, my best wishes to all other UC’ers out there battling every day!

Medications:

No medication other than prednisone worked for me over the course of 3 years, which is why I opted for surgery.

written by Kyle




27 Responses to J Pouch Take Down in 2 weeks, Need some Advice!

  1. Isabel
    Isabel February 19, 2013 at 5:45 pm #

    Kyle!

    First of all I would like to congratulate you on your new begining. Honestly there’s no comparison between the two surgeries as far as pain and time for recovery. Recovery time is much faster! You go in with your bag attached and there is no prep because you no longer have your colon. There’s no eating or drinking rhe night before depending on the time of your surgery. As far as pain I recalled having horrible gas pain and what it feels like lava coming out od your behind. Buy calmoseptine (sp) is an ointment. The burning will gradually go away. Recovery time varies from person to person. I tool longer because I was very weak when I went in for my surgeries. I would say take it easy and listen to your body. Also, they will tell you to keep a low fiber diet. Introduce foods slowly. The first few weeks to a month will be rough but believe me it will get better! If you have any questions please don’t hesitate to ask you can email me @ trejoisa@aol.com. Good luck! Stay positive!

    • Kyle February 21, 2013 at 8:13 am #

      Hey Isabel,

      I really appreciate your response, thanks so much! I had my reversal on February 8th, and it took a little longer for my bowels to wake up than I thought. I came home about 5 days after, but still unable to hold foods down and would just throw them. So, I was readmitted for 3 more days, 2 of which they kept me on strictly IV fluids to rest my bowel, and that did the trick. The next day I was eating just fine and my j pouch felt great. the first 3 or 4 days after the surgery, you were right- the gas pain was horrible and much worse than the first surgery I found. but, I am two weeks out today and I am eating a pretty normal diet, going to the bathroom consistently with no butt burn and I’m doing very well! Thanks again for your advice and best of health to you!

      -Kyle

  2. Isabel
    Isabel February 19, 2013 at 5:49 pm #

    I am sorry for the horrible spelling. Typing from your phone and having a five year old pulling you is not the best idea! Good luck!

  3. Rich February 19, 2013 at 6:04 pm #

    Thanks for sharing your story, Kyle. It’s nice to see other young people in my area (I’m in MA/NH) going through the same thing. I had surgery one of three on January 15th. Second is scheduled for April 3rd. I look forward to seeing a follow up post. Good luck!

    • Kyle February 21, 2013 at 8:15 am #

      Thanks, Rich. I hope your journey with surgery is as good for you as it has been for me. I will be posting an update for after my takedown in about a week once everything has pretty much settled. I wish you the best of luck with your other surgeries, no young person or anyone for that matter should have to go through this but that’s life I guess!

      -Kyle

  4. Jason February 19, 2013 at 6:22 pm #

    Kyle,

    I just had my takedown on Jan. 11th. Where do I start…..surgery was really quick and I felt pretty good afterwards. Pain wasn’t bad, I was in hospital 2 days. Same deal with food, nothing, than ice chips, than liquids than solids. But at a much faster rate than the first surgery. The day I got home I started having horrible gas pains which in my case lasted about 10 days. Not common and hopefully doesn’t happen to you. I was going to the bathroom between 6 and 10 times a day but have total control! You will get butt burn so I recommend getting some calmoseptine lotion to help with that. Other than that pretty smooth recovery. Just got the ok yesterday to get back to the gym, so about six weeks after surgery. It was great to get back after 3 months off! Everything is working good and gets a little better every week. Hopefully you have a speedy recovery as well. Good luck brother and congrats on your new j pouch!!

    • Kyle February 21, 2013 at 8:18 am #

      Jason,

      Glad to hear your operation went very smoothly. Mine was on Feb. 8th and it took a bit longer than most to recover I think because I was so steroid dependent before, but two weeks out now and I’m doing extremely well. I am VERY envious of you being able to work out again! That’s what I’m missing the most, but my doctor said in about 6 weeks I should be able to again. Glad to hear you’re doing well with your surgery and recovery and I hope you can stay healthy for the foreseeable future dude.

      -Kyle

  5. Brad Walker February 19, 2013 at 7:26 pm #

    Kyle congrats on getting your life back to normal! For me the pain was worst after surgery part 1 mostly around the ostomy site. Takedown wasn’t as painful. I was in the hospital for 5 days after my takedown. My Dr. initially said 7 days but let me go home early because I had an english final exam due. I had takedown on Dec. 5th 2010 by February 2011 I was allowed to do whatever I wanted exercise wise. I waited until March just to be safe. Diet well I didn’t jump right into eating whatever but within a few weeks my diet was pretty wide open. I stayed away from spicy stuff initially even though I love spicy foods. A trick that seems to work for me is if I ever get to where I’m going to the bathroom very frequently milk seems to help, but if I’m doing fine it has the opposite effect. My Dr. gave me a list of foods to avoid that can cause a blockage but one that was not on the list that should’ve been is MUSHROOMS avoid them like they’re the plague. As far as working out start slow you may notice your abdomen feels tight when you try to fully extend where the ostomy was. That will go away over time.
    Best of luck if you have any more questions check the comments under the link to your article on facebook I’ll post a comment and you can send me a message on there.

    • Kyle February 21, 2013 at 8:23 am #

      Hey Brad, I totally agree with the pain comparison between the two surgeries. I found that the pain lasted longer with the first one but the second one the pain was worse, however didn’t last as long. Probably because I didn’t have a pain pump, although dilaudid definitely helped (haha). I don’t think I have to worry about mushrooms too much because I’ve never been a huge fan of them, but I have noticed with milk that I usually feel the need to empty my j pouch pretty soon after I have some, especially with breakfast in the morning. I love spicy foods as well but like you I think I’m going to wait a few weeks before i reintroduce them, even though I really love buffalo chicken. Anyway, i appreciate all your input and I can’t wait to start exercising again and leave all this in the past!

      -Kyle

  6. shelly in maine February 20, 2013 at 4:12 am #

    Kyle,
    Congrats on your decisions and road to better health.
    Check out the stories under the surgery section in addition to the great responses you’ve already gotten. You can ask others directly like Blake or Baker or Emie or etc…you get the idea…lots of great resources/great people with inside info!
    Best, Shelly

    • Kyle February 21, 2013 at 8:25 am #

      Shelly,

      Thanks so much, it feels really good to finally feel better and actually BE better, rather than just feeling better due to prednisone. I have checked out both Blake and Baker’s stories and they really helped prepare me for my surgery which was on the 8th, and I am doing very well now. I plan on posting another update pretty soon with my experience so that hopefully others can benefit from me in the same way.

      Thanks again,

      Kyle

  7. Jeff D in Michigan February 21, 2013 at 1:54 pm #

    Hey Kyle, It is great to hear your story an see so many people going through the same thing, it is very comforting. I will be going in for my J-pouch construction and attachment on March 4th. I have to go through three surgeries because I was so weak and beaten down by the steroids before my first surgery, plus I am type one diabetic. I was on 40mg of prednisone, full does of IV therapy Remicade and 150mg of Imuran (I had no immune system). My surgeon has been telling me that for every surgery the pain and recovery time is less and less. I am a much different person since the first surgery, the prednisone really changed my personality and like you said, other than bag, I am almost completely back to normal. It is a great feeling. It was always hard to explain to people when I was explaining the surgery, they were also so scared for me and I could barely explain to them in words that it was a good thing, and that it was finally a change for the better. So Congrats!

    • Kyle February 22, 2013 at 11:27 am #

      Hey Jeff,

      Great to hear everything is going well for you so far! I was extremely dependent on prednisone as well so I was very surprised to hear that I was able to do the process in only 2 surgeries rather than 3. The prednisone definitely affected my personality as well, especially my road rage and tolerance of little annoyances. And you’re right, with my experience the reversal surgery was easier than the first, also because there was less drastic changes like an ileostomy to become accustomed to. Explaining a situation like this can certainly be tough and sometimes redundant to people in our lives who don’t really understand, but that’s what makes this site so great- you know that the majority of people on here can directly relate to you and it feels really good.

      -Kyle

  8. Emie
    Emie February 21, 2013 at 8:54 pm #

    Hi Kyle,

    You sound so much like me it is crazy!! I am so glad that you are feeling better and almost done with this battle. I go in for my takedown on the 9th of March and am super excited!! I am a little scared to have this surgery because I have felt amazing since I had the 1st one. Of course I cant wait to not have the bag anymore for odviouse reasons, but it has been nice to not have to rush to the bathroom. I feel like I have a new life, like I can actually enjoy going out and doing stuff. I have battled this for 9 years and it is finally almost over!! I am so happy for you to have your “new” life too!!

    • Kyle February 22, 2013 at 11:35 am #

      Emie,

      Holy cow 9 nine years! I don’t know how you managed UC for so long, but congrats on your journey. I had the same thoughts as you just mentioned prior to my reversal ( I actually had my reversal on Feb. 7th)- I felt so normal and so good that I almost became hesitant about having the reversal done, however I really did not want the bag any longer. I’m not sure how your experience was with an ileostomy, but all i can say is that my first night home after my reversal I slept better than I did any night of the 8 weeks with a bag and it felt great. Sure, going to the bathroom after not really needing to “go” to the bathroom is a drag at first but then you get back into the swing of things and it feels pretty much normal. And you’re right, I totally feel like I have been given a new life and a new opportunity to do everything I loved doing before but without colitis weighing me down constantly. I wish you the best of luck with your surgery on the 9th and before you know it you’ll be all done!

      -Kyle

      • Emie
        Emie February 25, 2013 at 7:09 pm #

        Hi Kyle,

        Glad to hear you are doing great and thank you for the inspiring words. Yeah, 9 years…..I just kept waiting for a miracle cure, but so glad now that I had surgery. I am so glad things have gone so great for you so far and I can only hope to heal as quickly as you. Thanks again for the inspiration!!
        Emie

  9. Davey February 21, 2013 at 9:59 pm #

    I’m so glad for the whole list of you here, who have gone for this 3 part surgery.. and have had success.
    I did the whole thing (after more than a decade of UC)… and for 1 day post surgery #3, I felt amazing…. and after that … it was back to the same old thing. I literally felt AMAZING for 1 day… and after that, I felt like I’d never had a single surgery at all.
    My UC quickly became Crohn’s, same # of BM’s per day.. same lack of response to medications, same bowel pain & constant need to empty my bowels… and the need to be near a washroom at all times.
    :0/
    sucks to be me, but I’m glad you all have had more success with this than I have

    • Kyle February 22, 2013 at 4:26 pm #

      Davey,

      I’m truly sorry to hear about your situation, I have a friend who went through with a colectomy and later found out she was misdiagnosed and that she had crohn’s. It’s not always easy to stay positive especially when you constantly get kicked back down, but try to believe that better days are coming in the future and I hope that with the help of your doctors you can find a solution.

      -Kyle

  10. Blake February 21, 2013 at 11:21 pm #

    Hey Kyle,
    Haven’t been on here lately, which is a good thing because that usually means you’re doing all right. It’s been 6 months since my takedown, things are great! I have very little bad things to say about my J Pouch and I’m sure you’re gonna love it. Good to hear you are feeling good with the bag, I think that will translate over to your J Pouch as well. As far as surgery and pain, I remember feeling like I hadn’t even had surgery with the takedown. I was doing laps around the hospital as soon as the sedation wore off. A little advice though, you’re going to be hungry as hell after surgery, don’t try to start eating solids too quickly. I felt great, was about to leave the hospital on the 3rd or 4th day, thought I was ready to eat a hamburger patty. Ate the patty and the rest of my lunch just before I left the hospital, started feeling like shit on the drive home and was back in the hospital that night with a blockage. If I could have a re-do, I would’ve waited another few days before trying that.

    Gas pains were the worst after this surgery, I’ll take incisional pain over gas pains any day. Be ready to clench those butt cheecks the first couple weeks. I thought it would last forever, but after a couple weeks, the gas pains got less and less and now it’s nothing I can’t handle. As far as eating, they will give you a generic diet plan to follow. As time goes by, you can pretty much eat whatever you want. I eat gluten free because I have Celiacs disease as well, but I’m not starving myself by any means. I’m the heaviest I’ve ever been right now, 210lbs, need to hit the treadmill, which leads me into the next topic, working out.

    I like lifting weights. I hate doing cardio and all that other stuff, but I try to get that in as well. You’re doctor is going to tell you not to lift anything over 15lbs for like 6 weeks, “ain’t nobody got time for that!” Haha. I went back to the gym 2 weeks after surgery and started doing light weights. I did the 2 week method after all 3 surgeries (meaning I only waited 2 weeks). Even after one week I was experimenting with push ups and stuff. Build yourself back up to speed, but I would warn against certain lifts, any kind of lift you feel puts too much pressure on you old stoma site. I wore (and still do) wear a belt when I lift. One of those elastic ones you can buy at Walgreens that you wear under your shirt. I just listened to my body and if it said “no,” or even said “maybe I shouldn’t,” I wouldn’t do it. I’m not telling you it’s okay to do what I did, I’m no doctor, but this is what I did and I never had a problem with it. I’m currently stronger than I’ve ever been, I’m also heavier than I’ve ever been meaning I’m getting kind of fat now too. Haha! I think my colon was holding me back all these years. Now that mofo is gone, the skies the limit. I was really terrified after all these surgeries that I wouldn’t be able to work out like I used to, but I found that to be untrue. I may have a hernia, not from lifting, but from sneezing. It doesn’t bother me though so I’m not too worried about it. I’m a violent sneezer, if I feel a sneeze coming on, I just put pressure on my old stoma site and I’m fine.

    One last thing, you may want to get some cheap underwear for the first couple weeks after takedown. It could be just me, but I had a hard time keeping them white the first couple weeks. I would also suggest getting some maxi pads for when you sleep. Yes, I said maxi pads, the ones with the wings. My wife was the one who suggested it to me and it turned out to be great for my underwear. It won’t last forever, so don’t get bummed out. But chances are you will get some night time leakage here and there until things heal up. You’re almost there, good luck bro! Let me know if you have any more questions.

    • Emie
      Emie February 25, 2013 at 7:17 pm #

      I Love reading your stories!! I think that I was able to have surgery because of you, you just tell it like it is and even though you had some shitty times(haha) you made it all so funny. Glad you are still posting and helping us all out with things!! Glad you are still doing great!!
      Emie

      • Blake February 27, 2013 at 7:52 pm #

        Ahhh, thanks Emie! Too sweet of you. Sending positive thoughts your way for your takedown this March, just in time for bikini season. I think you’re gonna be a huge success! Good luck!

  11. Kyle February 22, 2013 at 11:47 am #

    Blake,

    I can’t tank you enough for your great response. I ended up havng my take down on Feb. 7th, so I’m a little over two weeks out and I have made progress every single day. I definitely agree in taking incisional pains over gas pains. My gas pains from the reversal were way worse than my first operation, but they went away quicker. And, I commend you for getting back into the gym so soon! I feel like I can lift right now but I’m gonna wait a bit. My surgeon left my stoma site open to heal from the inside out, so I still have a big hole in my side I need to take care of and I don’t want to ruin it with any heavy lifting. I hear ya with the cardio too haha. I love lifting but I hate running, which is probably why I’ll never have a 6 pack. But anyway I did experience some leakage when i was in the hospital but now that I’m home I’ve yet to have any. My stools are getting thicker and I’m going less frequently.I’ve done my keegel (spelling?) exercises to clench my butt and those have helped, and my diet is pretty generic, I can eat most of what I want just I’ve stayed away from fast food so far. I’m keeping a similar diet to what I had while having my ilestomy. And sorry to hear about your celiac’s disease as well, having that and colitis must have really been tough. I have a cousin with celiac’s but he manages very well as long as keeps a close eye on what he eats. I appreciate all the advice you gave me and I know it’ll help me on my road to rehab and getting back to my 100% self, it means a lot to know that there are others just like me going through the j pouch process and who share the same interests as well.

    -Kyle

  12. blake February 24, 2013 at 8:43 pm #

    Hey Kyle,
    Thanks man, means a lot to hear such nice things. Glad you’re already past the hard part, gas pains are terrible and if you’ve already got passed the leakage, you’re way ahead of me at 2 weeks. My doctor also left my stoma site open to heal on its own. It took quite a while to heal, left a pretty noticeable scar, but you can just tell the chicks you got stabbed or something cool like that. I will never have a 6 pack either, but as you know, there are much more important things in life… like having huge arms. Haha! Im glad you’re not gonna rush back into the gym like I did. It’s the smart thing to do. You’ll know when you’re ready. I hope things continue to get better for you, I look forward to reading another J pouch success story. Take care bud!

  13. Chris March 2, 2013 at 10:13 am #

    Hi,

    Congrats on the takedown. I’m going for mine on March 6th. Any idea how long it is before I can start going back to work and getting out of the house and such?

    What’s the recovery like?

    Thanks,

    Chris

    • Kyle March 2, 2013 at 2:08 pm #

      Chris,

      I know that the recovery for everybody is different, and the level of difficulty varies. I am now 3 weeks out of my takedown surgery and I’m feeling really good and continuing to see improvement each day. Recovery was pretty tough at first, the gas pains were very painful but got better within a few days.I started passing stuff through my pouch about 4 days after the surgery, but only liquids. Make sure you listen to your body and that your nurses get you your pain medication when you need it. Also, be patient. I left the hospital sooner than I felt I should have and I wound up back there 2 days later because I couldn’t eat anything due to my bowels still being “asleep.” I was very nauseous and couldn’t keep anything down other than water, so I spent another 3 days on IV fluids until my bowels were awake. After I was sure I could eat and returned home again for the second time, I immediately felt much better. I slept great that first night. I went to the bathroom about 12-15 times a day at first, but each day has been less and less and with the help of taking one stool thickener a day, I have been going only 5-8 times these past couple of days. But, it also depends on what I eat. You’ll learn, as I am, that some foods work better with you than others. You’ll probably experience some butt burn too, but calmoseptine helps that as does the stool thickener. Anyway like I said I am 3 weeks out and still seeing improvements day to day but as of right now I feel great and am very happy I made the decision.

      -Kyle

  14. Leah July 8, 2013 at 7:38 pm #

    I admire you and find everything you are saying helpful. I just had my first of two surgeries. Its been difficult, cannot eat, get comfortable, or just hating the bag itself, with nausea here and therem! In 2 weeks I go in for an appt. I dont think its a pouchagram
    (Do they do these while im sleeping). Anyway i am excited to get through this hard part. So weak i feel like its killing me. Wish me luck!

  15. Kyle July 9, 2013 at 6:03 am #

    Leah, so glad My story has influenced you. I felt weak as well at first, but once you have your reversal you will feel much better. Your pouchogram will most likely be around 8 weeks after your first surgery and yes, you are awake for it. It is uncomfortable, but not painful at all. I wish you the best of luck and health!

Leave a Reply