Round 2 in J Pouch Surgery – What to Expect Next

latest picture of Lewis!

latest picture of Lewis!

I am in the Canadian Forces. I am currently at 2/3 of surgeries en route to a J Pouch. I am married to an amazingly supportive with. We have one daughter.

Enjoy outdoor life, ie: hunting, fishing etc. Enjoy watching and playing sports. I am a Christian.

I currently have no symptoms of UC.

Round 2 in J Pouch Surgery

I just finished up with Round 2 of 3 in my journey to a J Pouch. I thought I would post an update.

The surgery this time around was kinda weird going in healthy and feeling so good compared to the first one when it was an emergency to get the colon out as soon as possible.

I had my surgery at 0745 in the morning, so I had “fresh hands” as I have heard someone else refer of them to, when talking about going in first thing on the slab. I figured this was a good thing too. I also liked the fact that my surgeon had small hands so probably made it a little easier getting in their. With so many nerve endings all coming to a head there, I figured this to be paramount. :)

Woke up around 2 I believe, the surgery was right around the 5 hour mark. Everything went well with it and I was off to my room within an hour I believe. Took me a while to get any sort of an appetite going this time around. I think because I was on prednisone with my first surgery, that I woke up hungry. This time I had a drain tube going inside my belly that I didn’t have last time. This stayed for 3 days post op I think, along with the catheter. Last time the catheter was already out when I woke up. I also didn’t have the butt tube in after surgery, so this made me happy, as it was brutally uncomfortable last time.

I have noticed that controlling output is becoming a bit more challenging this time around, but am starting to get the hang of it. I was to the doc a couple days after getting out of the hospital to get fluids because of it.

Overall, things went pretty good so far, and I feel good too. I have a website that has some more info on it as well with my journey at www.determinedchristian.com

Anybody’s info on what to expect next for the next surgery, or who have any questions can hit me up at jeremylewis@determinedchristian.com or I will also follow this post and try to keep up with the comments.

Meds:

Taking immodium to keep ostomy output down. T3s for pain, which isn’t bad.

written by Lewis G

submitted in the colitis venting area




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42 Responses to Round 2 in J Pouch Surgery – What to Expect Next

  1. Mike June 24, 2016 at 3:00 pm #

    Glad to hear you’re doing well and 2/3 of the way done. My surgery is 2 stage, so my first surgery included the removal of the colon and the creation of the J Pouch, which I guess makes it a bit more intense than either of your two so far, but I got it over with in one shot. My first surgery was about 9 hours long, and I was in the hospital for 5 days (left on the 6th day in the late morning). I’ve mentioned some of the issues I’ve had in the other thread, the two biggest being (1) a lot of problems with the wafer leaking because of the placement of my stoma right in the middle of my stomach, over my belly button); and (2) one of the incision wounds not healing and having the discharge make it hard to keep the wafer stuck on. Both of those are under much better control now. The wound finally healed, and and I’m finally really getting the hang of getting the wafer on so it doesn’t leak as much (knock on wood!).

    I’m at 11 weeks post surgery. I’m getting around fine and it’s been weeks since I had any pain. I’m less active than you were after your first surgery, mostly because up until 2 weeks ago I’ve been terrified of poop leaking all over me if I went out somewhere. But I’m getting better. Today I went to my son’s pre-school for a belated Father’s Day ceremony.

    I’m scheduled for my super fun X-ray next Friday, which will be 12 weeks and one day past surgery, then I have a follow up the following Wednesday with my surgeon for a scope. Fingers crossed that all is good, and they might schedule the second surgery by mid July. Really ready to get it done and move forward. I have a cruise scheduled for Labor Day (planned it before they told me I needed surgery), so I want to have as much time between the surgery and then as possible.

    Are you just on regular Immodium? After a week or so of having really liquid stools my doctor added Lomotil. And I’m also on Cholynesterol powder. That keeps it pretty thick most of the time (although I typically have one or two much more liquid stools per day, I think it depends on what I’m eating to a certain degree).

  2. Lewis G
    moneyball June 24, 2016 at 10:05 pm #

    Ya man, that’s a long surgery! Was it also an emergency like mine was? I think that was the biggest reason for the three part because I was pretty near dead and had to just get healthy again after my first one.

    Awesome that you got things under control now! Everyone got their own timeline I believe and no doubt you are gonna be back to how you once were too.

    I just had my super fun x ray today! If in fact you mean the enema where they pump all the liquid in ya to check out the pouch? It wasn’t the funnest thing I have ever done, haha. The tube only went in a little bit but once it started flowing I had some cramping, nothing compared to a sigmoid or colonoscopy though. So not that bad considering. All was good with mine and I have a new surgery date coming my way soon to do the takedown. I am pretty pumped about that! Sounds like we may be having the takedown around the same time, definitely gotta keep in touch if that happens! Gonna need the support!

    Where ya takin the cruise, that should be a good time!

    I am just on regular immodium, ya. I don’t take it everyday, just every now in then if I feel I need it. It totally depends on what I am eating and drinking. No doubt if I were hammering back wine or something I would have to take about 10, haha.

  3. Mike June 25, 2016 at 3:38 pm #

    My surgery was planned, not emergency. I had a colonoscopy in January that showed some cell dysplasia. I was diagnosed with UC 18 years ago and Remicade wasn’t really controlling the symptoms anymore. All that led to my doc strongly recommending surgery, so here we are.

    Sounds like you’re moving along faster than me. Yes, it’s the enema X-ray this coming Friday, then I guess I do some kind of scope the following week with the doctor Hopefully it will all be good to go. Did they tell you how long to expect between rounds 2 and 3?

    I’m cruising to Bermuda. It’s a 5-day cruise, with a day and a half spent in Bermuda. Should be great. Hopefully I’m up to having fun on the island. If not, just sitting on the ship with a drink will be nice too.

    • Anne Mackenzie August 7, 2016 at 12:54 pm #

      I have had U C for 40 yrs, history of flares and none. I have 2 grown boys. After first son was born, terrible flare, and after second son NO flare.
      So have been going along in my life, now was in a continual flare. Should have caged Drs one point, but did recently have been going to a new dr at Mgh in Boston. Have been on Humira and Mercaptopurine, which actually improved my symptoms, but recently had a colonoscopy which showed a large rectal polyp near my anus which shows dysphasia. A surgeon advised me that I should think about j pouch. I am dumbfounded, never expected this. Have an appt w colorectal surgeon in 2 weeks and then go from there. It’s been so great to read experiences of “veterans”. Can t picture myself going through this. I think I fear having the ileostomy the most
      I am a retired RN, but it’s much different being on the patient side!
      Lots of luck to all. Thanks for listening

      • Lewis G
        Moneyball August 7, 2016 at 5:15 pm #

        Always open to listen to anybody. I just had my reversal done Friday and was out of the hospital Saturday feeling pretty good. Things were rough today once the pouch really started working but already tonight is feeling better.

        I hope you find peace in whatever decision you make. Honestly my time with a stoma was all good and didn’t bother me at all. I think cause I felt so good.

        God bless.

        • Anne Mackenzie August 8, 2016 at 4:39 pm #

          Thank you

        • Jo August 8, 2016 at 10:38 pm #

          Congratulations on your final surgery. How are you feeling? Has everything started “working” properly? I am amazed that you got out of the hospital so quickly. How long was your surgery? . I still haven’t decided if I’m going through with a J pouch because I am not doing very well post surgically. lots of joint pain and lots of fatigue.

          • Lewis G
            moneyball August 9, 2016 at 2:18 pm #

            Hey, I’m not feeling too bad, haven’t been eating a whole lot as I have seem to lost my appetite since Saturday, but otherwise doing decent. Took an immodium while drinking a can of pop which I don’t recommend because it basically locked gas inside for a few hours. That was a wonderful experience.

            I got out of the hospital the next day after surgery, I was up walking around and eating so they let me go.

            Feeling a bit fatigued from the lack of food though. Really want my appetite to kick in, I am sure it will soon.

      • Jo September 12, 2016 at 6:05 pm #

        Ann, how are you?

  4. Lewis G
    Moneyball June 25, 2016 at 6:08 pm #

    Hey, he mentioned they like to wait eight weeks, so I got four to go. But should be getting a call soon.

    That’s awesome about the cruise! Hope it all works out well for you.

  5. Mike June 28, 2016 at 11:42 am #

    Just got a call that my reversal surgery is scheduled for August 9 (pending the X-ray and scope being all good). I was hoping for sooner, but that’s the earliest my surgeon has open in his schedule. They are putting a note that I want to go sooner in case there are any cancellations.

  6. Lewis G
    Moneyball June 28, 2016 at 12:43 pm #

    Man that’s awesome ya got your date! Keep me posted on how the scope goes.

  7. Mike July 6, 2016 at 4:32 pm #

    Had the enema X-ray on Friday. It was … unpleasant, but bearable. Had my follow-up with the doctor plus the scope today. Both the X-ray and the scope came back great. My surgery even got bumped up a bit to July 21. They told me to expect it to be a little more complex because of the location of my stoma (which I’ve talked/complained about before). He said the pain would be a little worse than normal, and that my hospital stay will be 3-5 days instead of the 2-3 they normally say for the reversal.

    Glad to have all that stuff out of the way and glad there were no issues with either test. I’m ready to get this bag behind me and get onto the next chapter.

    I hope you’re recovering well!

  8. Lewis G
    Moneyball July 6, 2016 at 7:07 pm #

    I hear ya, I feel the same way about the “bag life”.

    Awesome you got those dates! Can’t wait to get mine.

    That contrast enema was definitely uncomfortable, ever since mine, I have had phantom rectum come around every now and then. Have you ever had that happen? Haha, I’m assuming you know what I’m talking about.

  9. Mike July 6, 2016 at 8:25 pm #

    Not quite sure what you mean? Like you feel like something is coming, but it doesn’t?

    I was OK during the contrast enema other than the very beginning and end. Once it was in, I was OK for the most part and the radiologist did his thing. Then I thought it was over, and he told the X-Ray tech to take 2 more pictures. There was a minute delay or so while she moved some stuff and got it set back up for the X-ray, and that was awful. Oh well. It’s over.

    The scope was super easy. I don’t know what I was expecting, but I guess something more like a traditional colonoscopy. This was over in like 30 seconds.

  10. Lewis G
    moneyball July 6, 2016 at 8:34 pm #

    Ya, it basically is feeling like you got to go to the bathroom but cant as you do not pass stool through your rectum anymore.

    Here is a link to a page talking about it:

    http://www.inflamed-and-untamed.com/post/113784930922/what-is-phantom-rectum

  11. Lewis G
    Moneyball July 12, 2016 at 1:03 pm #

    Round 3 next Tuesday! Somebody cancelled and I’m coming in off the bench! One more week with the bag and that’s all she wrote.

  12. Mike July 12, 2016 at 1:08 pm #

    Awesome. Good luck, man. I’m set for next Thursday! Here’s to being bag free next week!

  13. Lewis G
    Moneyball July 12, 2016 at 1:12 pm #

    Right! We will probably be in the hospital at the same time. I will try to remember to post right after and tell ya how I feel.

  14. Mike July 19, 2016 at 8:04 am #

    Good luck today, Lewis!

  15. Lewis G
    Moneyball July 19, 2016 at 8:50 am #

    Thanks! In here hooked up waiting right now.

  16. Lewis G
    Moneyball July 19, 2016 at 8:30 pm #

    Was hooked up to iv, in operating room dress and got cancelled. Waiting on a call for a new time now.

  17. Samantha July 30, 2016 at 9:30 pm #

    Hi everyone, stumbled onto this website and your thread. My daughter is 8, diagnosed with UC in Febuary of this year. No response to Lialda, methotrexate, remicade, dual therapy of methotrexate and Lialda and just barely responding to prednisone anymore at 40mg a day (max pediatric dose). She’s in tacrolimus which is keeping her at approx 4-5 BM a day, still diarrhea, still blood, still abdominal pain and cramping at night without relief. Our last hope is entyvio, which were being denied by insurance companies for due to her age. If not that, the next step is the ostomy, j pouch and eventually the “takedown”, I believe you called it. I’m dying on the inside for her and am interested in your progress during the last step. Please follow up if you are able and I’m sorry to hear your surgery was cancelled.

    • Dan August 6, 2016 at 11:40 am #

      My son drew (16)
      60 days ago we didn’t know what uc was
      Looks like colon removal next week
      All the meds you mentioned having not worked
      Last 10 days on (tac) slowing little?
      No form to poop,lost blood,need transfusion,hospital last 30 days
      My wife and I can feel you
      I know all will turn out good

      • Jo August 8, 2016 at 10:47 pm #

        Dan, how is your son doing? I hope he is had some improvement in his health.

  18. Lewis G
    Moneyball July 31, 2016 at 9:53 am #

    I will absolutely be posting my info on here. My last surgery is this Friday .

  19. Lewis G
    Moneyball July 31, 2016 at 10:21 am #

    I will be praying for you and your daughter too.

  20. Mike July 31, 2016 at 2:38 pm #

    Samantha – all my best to you and your daughter. I can’t even imagine. My biggest fear is that my little guy (he’s 4) will end up with UC like me. As hard as it is go go through it myself, it’s always worse when it’s someone you love, especially a child. I hope you get the insurance worked out. Don’t stop fighting. This is important, imo – have you ever heard of GAPS? It’s a book/diet. It’s very strict. A lot of people will say it’s mumbo jumbo, but I don’t think so. I went on the diet in January 2014 when things were getting bad and saw very quick improvements in my symptoms. Unfortunately, I didn’t stick with it long term (I had some serious things going on at home and caved to the ease of the SAD). For me, though, I had been sick for like 16 years at that point, so the damage was largely done. I really think for a young person it could be a huge life changer. For example, I went in for my Remicade a couple months after I started the diet and had blood work done, and all my blood work was great. It was normally terrible. A big part of that was, I think, that I wasn’t having diarrhea nearly as much, so my iron was higher, I wasn’t bleeding, etc. It’s a very strict and difficult diet, especially at first, but I really think it could be helpful. Even if it doesn’t “cure” her UC, it could at least make her feel better and control some symptoms.

    Here’s the book, if you’re interested: https://www.amazon.com/Psychology-Syndrome-D-D-D-H-D-Schizophrenia/dp/0954852028/ref=sr_1_1?s=books&ie=UTF8&qid=1470001041&sr=1-1&keywords=gaps+diet

  21. Mike July 31, 2016 at 2:47 pm #

    Lew (and anyone else who is interested) I just wanted to give you an update of how I’m doing a little more than a week past my surgery. I came home a week ago today, actually (after having surgery the Thursday before).

    Around Monday of last week I noticed that my BMs were no longer watery. They’re more like thick toothpaste (sorry for TMI). Throughout the day, I feel pretty good. I’m going maybe four times throughout the day (I haven’t really been counting). The past couple nights have been a little unpleasant, though. I’m finding myself going every hour or so. It’s that same thicker consistency. I’m not sure if it’s just that I’m eating too late into the evening (when I first got home I was making a point not eat after 7:30 and I’ve been less strict lately). It also could be that I’m just not sure/able to completely empty the pouch yet, so when I go it’s not getting the job done. Hopefully that will come?

    I have had a few unpleasant BMs where I feel spasms in my guts, but those are rare. I also haven’t had much in the way of “butt burn,” probably because my BMs haven’t been liquid. There is some soreness and I’ve used Calmoseptine a few times, but nothing too bad. Again, excuse the TMI, but sometimes it feels like there’s something really big coming out and stinging on it’s way, but then it’s just the soft little stuff in the toilet.

    I’m thinking this is all just part of the process. I know that people say there’s a trick to learning how to completely empty your pouch, and I’m not sure how long that takes. Since I’ve still got all the stitches in my gut and the hernia risk is still there, maybe that’s something that will come when I’ve healed more.

    All in all, I think I’m doing pretty good. I take a pain pill before bed and first thing in the morning, and then I’m good for the day. I go back to the doctor in two weeks to get the stitches out and for a check up.

    • Steve August 7, 2016 at 7:44 pm #

      Hi Mike,

      I hope that you are doing great at this point. I haven’t seen any more updates and was wondering just how you are doing.
      Please give us an update if you don’t mind doing so. Sounds like yo are doing really good.

      Thanks so much!

      • Mike August 8, 2016 at 6:02 am #

        HI Steve (and Lewis and everyone else),

        Well, I wish I had a better update. Everything seemed to be going pretty well for almost two weeks post my second surgery. Then on Wednesday of last week I started having serious pain starting in the lower right of my stomach. It came on slowly but surely around 5 or so in the evening, and got progressively worse. I thought it might be a blockage so I stopped eating and drank a few glasses of white grape juice, but nothing helped. So I went to bed in pain still thinking it would pass and I’d be fine.

        It didn’t. I wasn’t.

        On Thursday morning after talking to one of the doctor’s at my surgeon’s office (who talked to my surgeon) I went to the ER. I got a CT scan that showed inflammation in the small intestine (or as I call it now, my only intestine). So they admitted me, put me on fluids and IV antibiotics, and said nothing by mouth for the weekend. By yesterday I was feeling significantly better – I don’t think I took any pain meds yesterday at all, actually (I had been on morphine since I came in). So I had a follow-up CT yesterday and I was sure it would show vast improvement and I’d at least be sipping some chicken broth by now.

        It didn’t. I’m not.

        Still a lot of inflammation. Doctor actually said it looked more intense on the second scan. The sort of best case scenario is that it’s residual inflammation from the surgery (as I mentioned in a previous post, my second surgery was more intense than most takedowns because of the placement of the stoma and scar tissue, etc.). The less optimistic possibility – although it’s certainly not a foregone conclusion at this point – is that I have Chron’s or some type of IBD in the small intestine. My doctor did note that the pain came as I was really weaning off of the steroids, so it’s possible that my prior UC meds, the stoma, and the steroids were masking another issue that was always there in the small intestine.

        But, let’s not get too far ahead of ourselves. Now I get to go on TPN for a week to further rest the bowel, and they’ll do another CT scan in a week. Ugh. They should come by to put in my “pick line” shortly. I’m sure that will be fun.

        So, sorry I didn’t have a better update. For the first 12 days post surgery it looked like it was going to be smooth sailing. Then I hit a submerged couch and capsized.

        Mike

        • Lewis G
          moneyball August 9, 2016 at 2:23 pm #

          That sucks man. Hopefully things turn back around for you.

          Did you get your pick line yet? And if so, how is that going?

  22. Lewis G
    moneyball July 31, 2016 at 7:51 pm #

    Thanks for the update, and TMI’s are all good. Gives a heads up on what to maybe expect. Plus we have all seen some pretty brutal images considering how sick we all have been.

    Hope you continue to get better, and keep the updates coming!

    • Steve August 7, 2016 at 7:45 pm #

      Hi Moneyball,

      Just wondering how you are doing and how your surgery went. Hoping that you are doing just great at this time.

      Thanks!

      • Lewis G
        moneyball August 9, 2016 at 2:24 pm #

        Hey Steve,

        Doing ok, little fatigued from not eating much and going to the washroom so much since the pouch started working. But otherwise good. Nothing I didn’t expect.

  23. Jo August 21, 2016 at 7:57 pm #

    Lewis I hope you are doing well and getting improvements daily. I am still not well enough for J pouch surgery 8 months after the colectomy. I am still going to PT and OT . Dr thinks the prednisone caused a lot of damage. Lots of lab work to find any other culprit for all the joint
    pain and weakness. But i get out and socialize without fear of racing to a toilet!l

  24. Lewis G
    Moneyball August 21, 2016 at 8:16 pm #

    Ya man, feeling better each day.

    Good to hear you are getting out with no worries, that was such an awesome thing to not have to deal with!

  25. Mike August 21, 2016 at 8:22 pm #

    I went two weeks without eating. Had a third CT scan last Tuesday and saw the doctor the next day. There was “significant improvement,” so I can eat again. I’ve been eating since Wednesday evening and so far so good. Hopefully that’s behind me and I’ve got my fingers crossed that I’ll be able to go on my cruise in two weeks. They’re leaving the PICC line in for a week or so to be safe, but I’m optimistic that I won’t need to use it again.

    While I was in the hospital and when I was home on the TPN and IV antibiotics I had horrible diarrhea. I think it was the antibiotics coupled with not eating and not taking my probiotics (because I couldn’t have anything by mouth). Within a day or so of being back on food and taking probiotics (and off the antibiotics) it cleared right up.

    Onward …

  26. Lewis G
    Moneyball August 21, 2016 at 8:27 pm #

    Onward indeed!…

  27. Jo September 12, 2016 at 6:08 pm #

    Butt burn…..get a bidet….easily added to current toilet,….Coco bidet.

  28. Lewis G
    moneyball November 18, 2016 at 8:44 am #

    Round 3 has now been posted by Adam on this site.

  29. Lewis G
    Moneyball October 10, 2017 at 10:32 pm #

    Well it has been almost a year since I posted a reply on here and quite a bit has happened. I am being released from the military now and starting an off grid homestead. There is not enough space here to fill everyone in but you can follow my new journey here on YouTube. The link below is to a video of me giving a quick overview of my UC journey.

    Here it is https://goo.gl/grTdJX

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