J Pouch Creation – Rough Recovery So Far

j pouch pre surgery #2

Pre-Surgery

Introduction:

44 year old father of three (22, 18 and 13 years of age) and husband to a great wife that has done more than her share to help me through this ordeal.

Some more about me:

I live in a small town in central Ohio.  I love to play basketball, take fishing and hunting trips and attend Ohio State basketball games and Cincinnati Reds games with the family.

Symptoms:

No current symptoms of UC, colon was removed in January 2013

J Pouch Creation – Rough Recovery So Far

Just a quick update on how my my journey to a functioning J Pouch is going. I had my colon removed in January and then had the second stage surgery (creation of the J Pouch) on June 5th. The Third and final takedown surgery is scheduled for September.

The recovery thus far for this second surgery is much more brutal than the first surgery even though the hospital stay was much better since they actually let me get some sleep this round. The surgery took 7 hours due to some complications. I think this is why my recovery is rough. It has been almost two weeks since the surgery and I am still having fevers in the evening, a good amount of pain and night sweats like you would not believe. My rectum constantly aches and now when I have to pass the phantom mucous once a day it contains a good amount of blood which now has me concerned. I still have my appetite and the pain killers get me through the day but I am very concerned that a staple may have come loose or the pouch may be leaking a bit. Will find out tomorrow when I have my 2 week follow up at the Cleveland Clinic. I have read so many stories about the types of issues that can arise but what I am going through now is still nothing compared to the dreaded life I wa s living when UC was raging over my body.

after surgery still sleeping

shortly after surgery

I was in the hospital for 4 days this round and the staff was again top notch. I was sent home with a JP drain coming out of my abdomen and man does it suck. I can’t wait till it is removed on the 18th. I know it is going to hurt but I am sure it will not hurt as bad as when I got the drain tube stuck on a door handle as I was walking by and ripped out a few stitches and then gave the world a few choice words. I keep going back to Baker’s (http://www.ihaveuc.com/author/baker/),Blake’s (http://www.ihaveuc.com/author/blake/) and Emie’s (http://www.ihaveuc.com/author/emie/) stories to keep my mind on track and to appreciate where I am at. For anyone facing surgery I highly recommend you read any post that the three of them put on this site. I know there are bad stories out there about J Pouches but the positive outcomes are what keeps my hopes up high and keep me going every day because trust me this disease and journey has had me more than depressed and ready to give up at times.

FYI, if you choose the 3 stage surgery (I did because it is done with a 4 inch laproscopic cut rather than opening you all the way up) your second stoma will be a much crappier version than the first. My two piece wafer starts to leak after about 2 days. I do have an appointment with the stoma nurse soon to try new samples that should work better. This leak has led to one itchy skin rash but my trick is to use powder then cover it with stoma paste then put the wax ring over that. I will keep everyone posted on my current concerns and how they are taken care of just to help educate others the same way I was educated about my pending surgeries.

This web site has been a God send to me and I really appreciate all the feedback and support that we all seem to provide to each other. I am also going to go order my No Colon and Still Rollin T shirt that is mentioned in another story from Curtis on this web site.

Medications:

I am and have been medication free for 5 months now except for some daily vitamins and optional pain killers.

written by Mike

submitted in the colitis venting area

21 Responses to “J Pouch Creation – Rough Recovery So Far”

  1. Kourtney
    KourtneyJune 21, 2013 at 1:31 pm #

    Hey Mike,

    I’ve recently just completed my J Pouch surgeries (although mine were done in 2 steps) back in April. It does get better! If your takedown surgery goes anything like mine did, it should be a breeze. I doubt that anything will be as difficult as this last surgery was for you. The only thing that really sucks is the butt burn.

    One thing I can recommend is to skip the stoma paste! Every nurse has told me that that stuff only makes skin burns worse (which I ultimately found out on my own.) The alcohol in them is NOT good for irritated skin, and it is not meant to adhere to skin. To get a great seal I used the following: convex flanges (they help to push the skin down around the stoma), stoma powder, some sort of skin barrier prep wipes (they help with burns and also promote a good adhesion of the flange to the skin), and barrier rings.

    First I wiped the area with a skin prep wipe, then would apply a light amount of stoma powder around the stoma (and make sure to wipe off at much as possible! It should be as light as can be to promote a good stick), and then I would use another prep wipe and dab it into the area where the stoma powder was. This helps to create a bit of a light paste to protect the burned area and promote healing. Then I would add more powder around that same area again, making sure to wipe away as much as possible. After that, you should take your barrier ring and mold it around the stoma (making sure it’s nice and snug.) Finally, stick on your flange and you’ll be set.

    It took me weeks to figure out a system that worked for me and prevented leaks, and this seemed to do the trick. I hope it works for you!

    • Mike from Ohio
      Mike HJune 24, 2013 at 3:17 pm #

      Thanks Kourtney.
      My stomanurse did put me on the Convex wax rings and that has helped with the leaks. I can go three days instead of one now. $ days is the max I will ever go so I am happy witht he new system. I did stop using the stoma paste as well and the brning has not been as bad. I do not look forward to the dreaded butt burn that everyone speaks about but at least it will not come as a surprise.

      Mike

    • SusanJuly 25, 2013 at 8:12 pm #

      I completely agree with this post. This was my same experience and the convex barrier worked a lot better too. Just thought I would put my 2 cents in. I had jpouch surgery on July 2nd and I am still recovering. The second surgery for me was not laproscopic so my incision is taking much longer to heal, but I am getting a little better everyday…still taking pain meds, but lessoning the dosage and hope to begin to feel more and more normal in a few weeks and then have the 3rd surgery. It is a long road, especially when you were so sick leading up. Thanks for all the posts too. So helpful.

      • SusanJuly 25, 2013 at 8:13 pm #

        Kourtney’s post!

  2. Kourtney
    KourtneyJune 21, 2013 at 1:35 pm #

    I should also mention that you should use a hairdryer after everything is all said and done! Put it on a warm setting and aim it around the flange (specifically where the wax is) for a couple minutes. This will slightly melt it and create an awesome seal.

  3. Emie
    EmieJune 21, 2013 at 6:55 pm #

    Hi mike! So sorry you are having such a rough time!that jp drain totally does suck! I remember the terrible sort of zinger pain, that is how I describe it, the quick intense shot of pain that sort of zaps you. My surgery was not laparoscopic which might be why I had less pain than you. That sounds weird since I was completely sliced open, but maybe that allowed Things to heal differently. I don’t know………. I do know how crappy it was to have the itchy skin from the leakage. I finally tried a different brand, I was using hollister brand and switched to Coloplast and that really helped especially since the piece that goes on your skin is sort of concave and so it allows your stoma to come away from your skin a little more. Also the bags seemed to be a bit more discreet. I had to use a steroid spray on my skin for a while because I ended up being allergic to the adhesive in the hollister product. My ostomy care nurse said that is common for people that had uc, not sure why but something to do with the inflammation in our systems. The Coloplast products didn’t seem to tear my skin off when I changed them so my skin didn’t get so irritated, they also make these things called elastic a strips……they are actually like big curve pieces of sort of tape that allow you to move and not worry so much about the thing coming off of you. I really liked their stuff…..maybe check out their web site and ask your ostomy nurse. I know this is really difficult but it really does get better. Soon you will be back together and feeling great. September isn’t too far away right? I’m so glad that I was able to help you with my story, that is so sweet and it really makes me feel like it was all worth it. I’m here for you if you need anything. Watch lots of funny movies and try to stay as positive as you can. It will get better! Keep Rollin!
    Emie

    • Mike from Ohio
      Mike HJune 24, 2013 at 3:13 pm #

      Thanks for the reply Emie, The jp drain pain was exactly how you said it would be. I hope that is the last time I ever see one of those things. My stoma nurse had me switcc to a 1 3/4 inch Hollister two piece system but changed me over to a conves wax ring that is curved and concave so it fills the gaps much better and it does seem to work for three days before it says it’s time for a change. I also ordered colored pouches so if it does happen to show it won’t gross anyone out. I have been watching a ton of movies and I am starting to feel much better now.

      Mike

    • Mike from Ohio
      Mike HJune 26, 2013 at 8:41 pm #

      Hi Emie,

      Quick question. After your surgery that crated the J pouch can you remember how long you had pain in your rectum area. It has been three weeks and I am still feeling some discomfort down there but nothing major just a (no pun inteneded) pain in the butt.

      Mike

    • Mike from Ohio
      Mike HJune 28, 2013 at 9:44 pm #

      A little over three weeks after surgery and I am feeling better by the day. Man is it nice to feel good again.

      Mike

  4. kJune 22, 2013 at 1:53 pm #

    Hello Mike,
    I hope every day finds you feeling better and better on the road to recovery. Beside the very informative postings on this site that you mention, there is also a detailed group of videos on Youtube at: ucandpsc. He begins a few days before his first surgery last September and continues through his third j pouch surgery with over thirty open and informative videos discussing each step of the journey.
    I had an ileostomy in the 1970s. (The j pouch hadn’t been “invented” yet.) I still consider it a miracle. I do not know how anyone can live for years with the physical and emotional stresses and challenges of uc. That would need a courage I did not have!

  5. Mike from Ohio
    Mike HJune 24, 2013 at 3:23 pm #

    I had my 2 week checkup and the jp drain was pulled out, hurt like $%$#@. The surgeon also went in with a scope to check my j pouch and found a large amount of old blood still left over from the surgery. He cleaned it all out which releived a ton of pressure and said the pouch looks good and I feel so much better now. The pressure and pain is getting better by the day but I am going to go real easy for the next 6-8 weeks so I do not screw this pouch up. I need this bag to be gone and the J pouch in operation in September.

    Mike

    • shelly in maineJune 27, 2013 at 3:50 am #

      Great Mike…so glad to hear of your progress from your original story to now. Your story has been another great add to the likes of the others…which have been so important in my life as well. It has taken away so much fear for myself and others like you…it is important to see/hear the good, the bad, the ugly!
      Best for continued health and healing and getting your life back. :-) Shelly

      • Mike from Ohio
        Mike HJune 27, 2013 at 9:02 pm #

        Hi Shelly,
        What are your fears? Have you had any surgeries yet? I have had my second and await my third. I still have some fears of my own. I read a lot about c-diff, pouchitis, cuffitis and get somewhat discouraed but then I also read a lot of good stories that brings me back. I guess I do not really care how often I go to the bathroom anymore as long as the blood, pain, weight loss and sudden urges stay away for good.

        Mike

        • shelly in maineJune 28, 2013 at 3:56 am #

          hi Mike,
          thanks for your response. Just wanted to give you Congrats and kudos. I am a lifer with uc and hoping to keep my “innards”!
          I have pretty much been on this site since the beginning and have seen, and for myself included, how important these stories and sharing, especially the surgery ones are.
          By the way, no j-pouch surgery where I live!
          Hope every day brings you better health, Shelly

  6. BlakeJune 28, 2013 at 9:43 pm #

    I remember the drain in the butt. To tell you the truth, I didn’t even know I had one in my butt until the day after surgery when the nurse pointed it out. After she told me about it, that was about all I felt until the nurse popped it out. I wish she never would’ve told me it was in there and I probably wouldn’t have notices. Haha! Hope things are getting better for you Mike! Stay positive!

    • Mike from Ohio
      Mike HJune 28, 2013 at 9:54 pm #

      Hi Blake, Good to hear from you again. Things are getting much better. I had the butt drain my first surgery, I called it my tail and hated it. This JP drain was in my side and went in about 2 feet in and really was a bad bad thing when they pulled it out. Everything you said would happen has happenned. I am feeling better by the day and ready to get this bag off me. Are you still getting along pretty good? Any issues or complications this far into your full-time J Pouch that you should warn me about?

      Mike

  7. blakeJuly 1, 2013 at 9:14 pm #

    Hey Mike,
    Good to hear you’re doing well. I dont really have much to warn you about, Im sure you know what to expect by now. There is the butt burn, could have some leakage problems (i did but it has gotten much better for me). Im doing well, thanks for asking. Just realize that what you experience in the first few weeks with your J pouch wont last. I was prettg miserable those first few weeks, but it gets better over time. I go about 5 times a day, once at night. That seems to be my new normal, which Im very happy with. Much better than what UC offered me. Take care!

  8. Emie
    EmieJuly 12, 2013 at 5:59 pm #

    Hi mike, sorry I didn’t reply to you! I’ve been so busy I don’t even know where the time has gone! How are you doing? Hope your feeling great and getting your life back! September will be here soon!

    • Mike from Ohio
      Mike HJuly 14, 2013 at 7:43 pm #

      Thanks Emie,
      I am doing fair. I just have some dull aching pains that I cannot seem to get rid of. My surgeon scoped my pouch a couple weeks ago and said that it looked normal but this is just enough to keep my mind wondering. Did you ever have any dull aches or pains in your anus or rectum area that were just enough to bother you? I fell pretty good when standing and laying down but the more I sit the more it seems to bug me.

      Mike

      • Emie
        EmieJuly 16, 2013 at 9:57 pm #

        Hi mike, ya know I think I did have the occasional aches in my rectum and about a month ago I had a stitch come out and then things started to feel better. You probably still just have a lot of stitches that need to dissolve and muscles that need to heal. If it helps to lay down I would do that as much as possible. Try not to stress about it too much, I think if it was something major you would know without a doubt. That is easy to say though…….I’m guilty of stressing over nothing too. Get yourself a funny movie, some Popsicles since it is hot out, and relax on the couch! Or get a nice lounge chair and a good book and sit in the sun and relax. Your body has been through hell and it just needs some time to heal. Make sure you are eating lots of protein and staying hydrated and getting lots of rest, that will help you heal. I’m here for you if you need anything!

        • Mike from Ohio
          Mike HJuly 17, 2013 at 12:49 pm #

          Thanks Emie
          I never thought about the stitches. I think you are on to something. I just had a couple stitches come out of my small incision where the JP drain was and it instantly started to feel better and closed up and healed much faster. Yes it is very hot here too. Stay cool.

          Mike

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