Round 1 Down in J Pouch Surgery – What to Expect Next

Lewis G fIntro:

I am in the Canadian Military and first noticed symptoms while on exercise. I play a lot of sports and workout daily.

Current Symptoms of Ulcerative Colitis:

I currently have no UC symptoms.

Lewis’s J Pouch Story:

I just had my first surgery of three. I am having a J-Pouch created over three surgeries.

I was sick of being on meds and the risks of the medications, I felt personally were outweighing the risks of surgery for me.

I feel a thousand times better ever since I had my first surgery and got off all meds. I am very glad with the decision I made.

A week after the surgery I was working out with light weights again. I was not even in the hospital for 72 hours and was sent home. I was feeling great.

The recovery wasn’t that bad at all. And seeing my stoma didn’t matter to me none either. It was so much better than being sick that I didn’t care about any of that.

I have had no problems with the bag and find it just became a part of my regular routine right away. I empty it about 5 times a day I would say and change the bag and flange once a week min to twice a week at most. There has been no problems with it sticking to my skin, no rashes, etc. It does get a bit itchy having something covering that part of my stomach all the time, but not that bad at all.

It has been so nice to be able to eat again. I have gained 35 pounds since surgery as I was really sick. I had to have an emergency colon removal, that’s how bad it had gotten. Glad I did, weirdly enough, now.

My wife makes things super easy too.

I was wondering what to expect about the second surgery, where the J pouch is created. I also was wondering how anybody who has had it done, if they experienced any problems with sex, etc afterwards.

Medication Experiences:

I have been on lots of pred, aza and others.

written by Lewis G

submitted in the colitis venting area

141 thoughts on “Round 1 Down in J Pouch Surgery – What to Expect Next”

  1. Thanks for posting. I am in the hospitall (4th time), and there is no more to be done with mess or diet, etc. I have been steroid dependent for 4 years. Otherwise I crash.
    Your post gives me hope.
    Thank you.

  2. I really like the questions you posted. I hope you get some responses. You seem like a strong, fit guy with good support. That is so good.
    My surgery is Monday the11th. I will concentrate on being well, and getting back to biking, kayaking, and xcountry skiing.

  3. Yes, I have great support. I pray your surgery all goes great! You will see, you will feel a thousand times better after surgery.

  4. My surgery is scheduled for February 9. I’ve had UC for over 30 years (I’m 46 now.) It got to the point of accepting that I’m not going to get better and could possibly end up with cancer at some point. It will be a 2 part surgery, with the 2nd part being the re-connection to activate the J-pouch. I’m certainly curious to hear more about your experiences so far. Thank you!

  5. Thanks. Why is your surgery being done in 3 stages vs. 2? When is your next surgery schedule for? How was pain management handled while in the hospital and afterwards? Any dietary restrictions currently? How about after the takedown surgery? Thank you!

  6. For a couple of different reasons, I was told 3. One is that I had an emergency surgery, so they needed to get my colon out asap. The doc also mentioned to me that he always does them in 3 as it is easier on the body, or so he says. The pain was really not all that bad, I felt so utterly terrible before the surgery, that the pain was a welcomed change, if you can believe that. I was off IV morphine after a couple days and was not even in the hospital for 72 hrs and was doing really well walking around etc., so I was realeased with a prescription for morphine. I didnt really like the morphine however so I switched to tylenol 3 instead. I was only on pain killers for about 2 weeks I believe, maybe a little longer. I was lifting light weights again after a week if thats an indication at all as to how the pain was. It really was not bad. The only things I do not eat are nuts and lettuce that I can think of, otherwise, no dietary restrictions at all, it has been great to eat again!!! I have only had the one surgery so far, so can not comment on the take down surgery, but will update when I do have the other 2 surgeries.

  7. Great info, thank you. Do you have your next 2 surgeries scheduled yet? Best of luck, I look forward to hearing more and will certainly post my story as well once I have part 1 done in February in Tampa, FL.

  8. You’re welcome. I am waiting to hear back about the next surgery, I will hear anytime now and it will be about two weeks notice when I do hear from them. I look forward to hearing your story as well.

  9. Lewis, I had my colon removed Monday, going home Friday. One “coplecation” came out with hip pain due to the position I was in during surgery no one predicted that.
    The pain of my leg has been worse than the actual surgery which kind of makes me laugh. I have had to have physical therapy in the hospital to relieve the nerve pain. It is about 70% gone and I have some exercises to do both here at the hospital and at home which are quite easy. For my next surgery the physical therapist will work with my anesthesiologist
    to put me in an appropriate position so this won’t happen again.
    I have been told that I finally have a normal skin color bag, have been able to eat items that I haven’t eaten in two years, and actually have energy. I look forward to not constantly searching for a toilet. I know the surgery isn’t for everyone, and I had to try everything before I would agree to it. During this last flare I crash so quickly ended up in the emergency room, and my family and doctors And I agreed it was over because I was so sick I could no longer get up and do anything for myself.

    I was told it may be 3 to 6 months before the next surgery in order to heal and get myself stronger, and this time I hope to get my core of my body very strong prior to surgery. I will now be able to go work out .
    I hope Louis that you have continued to recover well and that you get your questions answered that you originally posted.

    1. Thanks for the update, I hope all continues to go well for you. I was told the same thing as far as timeline goes from one surgery to the next (3-6 months). Now that you mentioned pain post surgery, I had some shoulder and back pain after surgery for a bit and I would say that was worse than the pain from the actual surgical sights for sure. Keep me posted on your journey.

  10. Glad things are going well Lewis, and all good wishes for the next two surgeries. UC is such a horrible condition. I am glad you are free of it now.

    You asked about sex. I am assuming your GI and/or surgeon has mentioned that there is a small chance of a problem if certain nerves are cut in the next surgeries. I had hoped that others with more knowledge might respond, but as none have so far I will add a little.

    I can’t remember if any earlier postings on this website addressed it, but I know of two YouTube videos that do.

    ucandpsc
    is a detailed series by a guy in Chicago who had the 3 part surgery in 2012/2013 and in video 23 he discusses it – he had no problem.

    me and my bowel
    is a documentary of a guy in England who had the 2 part surgery and he alludes to it.

    I, like you, had emergency surgery. It was in the 1970s, so I have had an ileostomy for 41 years now. (J pouches hadn’t been “invented” yet.) The next year I had the diseased rectum out. My GI mentioned the possible problem, my surgeon did not. I can remember being concerned about it, but what could I do? I wanted to have the surgery over with and so had it. Fortunately, there was no problem. I wish the same for you.

    1. K,
      I’ve noticed many of your posts on this site and want to say Thank You. You’ve given me lots of good information. I, too, followed the videos from ucandpsc and found them to be invaluable. My surgery is scheduled for Feb 8. I’m 65 years old, so not a candidate for a J-pouch, and that doesn’t bother me in the least. Everyone keeps saying how great I’ll feel after the surgery, and I’m looking forward to that. Thanks again for sharing your experiences.

        1. Well, now, maybe that’s a good question! I am fit (I live in Colorado, so I’m outdoors a lot). Maybe because it involves additional surgery? I’ve also had excessive diarrhea for the past three months, and she said that if I’m already going 10+ times a day she didn’t think the J-pouch would improve that by much. She said it was a quality of life issue. I really didn’t question her because I had already accepted that I’d end up with a stoma. Your surgery is just a couple of days after mine. Want to share notes? You can reach me at sblmb4775@gmail.com. …SUSAN P.S. Have you looked at any of the YouTube videos by ucandpsc? He’s a young man that documented all his surgeries, through his J-pouch take-down surgery. I learned a lot from them.

  11. Thank you. My Surgeon did mention to me the possible complications and was looking to have someone who had gone through the surgeries fill me in on their experiences. Thanks for the youtube videos, I will be checking them out for sure. 41 years with an ileostomy, wow! Good to hear that they hold up just fine over a long period of time for those where the j pouch is not an option.

  12. Hey Lewis

    I thought i’d chime in and let you know my experiences.

    I’m 27 and had originally planned to have a 3 stage jpouch done.

    The surgeon advised me that during the 2nd op which is where they remove the rectum (proctectomy) and obviously delve down deep into the pelvic cavity, the risk of permanent nerve damage causing sexual/bladder dysfunction is about 5%. So that’s 1 in 20 people will have permanent nerve damage causing bladder control problems or erectlie dysfunction.

    I had the first op in 2013 and then after a while of living with my stoma decided I was happy with it and didn’t want to risk a jpouch. I’ll point out that wasn’t because of the risk of nerve damage as I had to have my rectum removed in 2014 anyway to make my stoma permanent and finally wave goodbye to UC.

    I experienced no nerve damage and it all went as it was meant to.

    I wouldn’t worry too much about the risk of nerve damage as 19/20 have no problem and those aren’t bad odds.

    All the best

    Tom

  13. Thanks for all of the above posts, will also check out tube.
    Lewis Hope you continue to heal.
    I am healing well, still a bit weak, using PT to improve my leg.
    Still a bit worried about the next two surgeries, so I hope folks keep posting.

  14. Hi Lewis, thank you so much for sharing your story. I am a 37 year old mother of 5 who is running out of options. All the 5 ASA drugs have failed me, prednisone works but I flare after I’ve tapered off, the Dr drew my blood and did some tests and determined my body will not be able to metabolize the 6MPs without major side effects or complications, and my husband doesn’t want me to do the biologics because of the side effects and possible risk of cancer. He’s not a fan of the possibility of me removing my colon to but I’m getting to the point where I’m just going to have to decide what’s right for me. I’ve also done 4 different research studies. Some worked, some didn’t, but nothing induced remission and I always flared after.

    My question to you is could I be a candidate for a J pouch if the disease is in my rectum too? My husband said that the rectum had to be in good condition in order for the small intestine to be attached to it, but I’m reading here that part of the procedure is removal of the rectum. I guess I need to ask my Dr.

    My other question is, would you be grossed out and unattached to your wife if she had a soma and a bag attached? I have a feeling that’s what my husband is worried about.

    1. Kristina,
      I too tried everything..including Entyvio, Remecaid, and Humira.
      I flared every time I tapered off prednisone…..two years of hospitalizations, pain, blood and barely able to leave my house. I now have osteoporosis, hair loss, and damage to my eye.
      I had to try everything before I could make the difficult decision to cut out my sick colon (and when they went in a bad appendics, precancerous areas in my colon).
      I once again was hospitalized at the end of December 2015. There were no more meds to try. I had also tried diet, supplements, yoga, meditation, counseling, etc.
      So I chose a colectomy. Jan 11. I am finally feeling better, able to leave my home without depends.
      , This is not a choice for everyone, and you need to fully explore any options you may have because surgery is permanent.
      I hope to have a J pouch but it comes with it’s own issues.
      As a woman I echo your concens about sex, dressing in nice clothes, the noise from the stoma, etc. There is a website that addresses some of this..Ostomy Secrets. I have ordered a wrap, swim suit bottom,and underwear. If you have time watch the videos of the women with ostomies.
      I chose the Ostomy to save my health, to no longer be the sick person who could not fully participate in my life as a woman, wife, mother, daughter, aunt, cousin and friend.
      I wish you health and recovery,
      Jo

  15. Hi, I was there too with the side effects, they totally suck, and could potentially be brutal themselves.

    They do remove the rectum as well as it is almost always diseased, I would believe if it were at the point of colon removal.

    As far as the stoma and bag deal, I wouldnt be bothered by it on account of how brutal a shape she was or would have been in leading up to why you would need it. I personally have a wrap that I wear that conceals the bag. It doesnt bother my wife that I have it, considering I was near death before they took out my colon.

  16. Just thought I would post an updare quickly, which is not much of an update as I am still waiting for Rd 2. Has anyone else that has gone through this waited more than six months?

  17. Sorry to hear that you’re still waiting. Just had my first of two surgeries two weeks ago. Getting tired very easily as the day goes on, doing fairly well all things considered, though. Final surgery/ take down will be in approximately seven weeks from now.

    I am not a fan of the ostomy but dealing with it as best I can. I know that the J -pouch will be a good thing for me and look forward to it. Please keep us posted and I will do the same.

    1. Glad you have both posted. I had my 1st surgery Jan 11, and living with my lovely stoma. The most interesting thing that has occurred has been running into people I haven’t seen for a few months, all say to me “you look great, your color looks good, your skin looks normal”. All I can think of is “how bad did I look?”. I have started asking everybody, well how bad did I look? Almost everybody has told me I looked like I was dying. I had no idea how bad I looked. I have really polite friends.
      I will meet with my surgeon the end of March but he’s been telling me that he does not want to operate on me for 4 to 6 months, until I am completely healed, my health is great, and I am physically fit.
      I understand from others that the second surgery is much more difficult than the first.
      If there are others out with completed J pouch surgery, I would love to read about you.

      1. It’s good to read all this information from people over the age of 60 and having. J-pouch surgery. I am 61 and had my first surgery in November an will be having the second in June. The final (takedown) will most likely be completed towards the end of the summer. I had no doubts about the j-pouch procedure, have an excellent surgeon and expect that it will not be perfect when all is completed. However, iit beats having UC.

  18. Hi guys just fell onto this site while looking around for stories about J Pouch surgery. I’m a women who was first diagnosed back in 2009 and has had a great set of Drs dealing with my needs. Unfortunately it just seems no matter what path we chose I end up back to square one and my UC is now taking control of my life. I’ve tried, Asacol, Lialda, Canasa, Prednisone, Remicade, Humira, and currently taking Entyvio. I’ve been hospitalized and my overall way of life has completely diminished I’m a career Nurse and had to change positions in my hospital from a RN assisting in surgeries to another position, one where I was able to get to a bathroom in time (and sometimes I would not make it anyway). I have a great support system in place and my Dr. is now asking me to consider surgery, J Pouch. Here’s my dilemma, I’m completely scared, I just like all of you want to live a normal life, my question is how mentally did you prepare yourself to finally get the surgery done?

  19. I personally had emergency surgery while in hospital so mentally prep was easy on account of I would have probably died. But as soon as it was through, I felt amazing and didn’t have an issues mentally at all. I believe you will feel so much better in the long run that you may feel the same.

  20. I did every drug, diet, exercise, counseling, before I agreed to surgery. I have been very ill for the last five years, could no longer work, have no social life, and my relationships with my family were declining because I was just the sick woman on the couch.
    I am now able to socialize, cook meals, go places and see people, and enjoy my family. It’s 64 years old And I want the less years of my life to be healthy and happy.
    Each person is different and I encourage you to explore every option you have before you choose surgery. Good luck to you, and may your health improves.

  21. Thank you both so much,today a long with my Dr decided that “enough is enough” I’ve been very, very sick and can honestly say that I’ve tried just about anything I was able too. Tomorrow I will be heading to the hospital and later this week surgery, I’m very sick right now so my Dr & Surgeon wants to prep me as much possible i.e. fluids, prep, etc..before surgery, stories like mine, like yours hopefully will give others the strength because reading your stories has helped me and I want to pay it forward to anyone who is deciding on how to reclaim their life…I am scared but I need to fight for my way of life and this illness has far too long got the better of me! I’ll repost post surgery!

      1. Hi guys I know it’s been awhile just getting somewhat back, mentally and def. physically! First surgery is complete, everything went according to plan, now time to heal and prepare myself for my next surgery..here’s the thing and it’s different for everyone, the pain for me was tough but manageable, the mental preparness was a little more difficult as anyone who’s been through this type of surgery could attest to. If your contiplatimg surgery I want to say that although it’s difficult, mentally and physically you have to keep telling yourself that this will get you to a better lifestyle, this will get you to a better you!!!!! This was one of the hardest decisions I had to make BUT I truly believe this illness would have destroyed me otherwise. I’ll keep everyone posted as I go through these different stages/surgeries, support from people whether you know them or not is what will help!!!! Thanks everyone!!!!!

  22. HI Lewis. I hope you’re still doing well. I found this page searching for J-Pouch success stories. I have my first surgery scheduled for next week. I’m scheduled for a 2-stage surgery. My surgeon told me it will be 3 months between the operations. I’ve had UC for 18 years, and I’m 36 now, so I was healthy for 18, and then had UC for 18 years. Looking forward to checking back in at 54 to comment on how the first 18 years post-surgery went. We talked about surgery a couple years ago when I had a bad reaction to Humira and ended up in the hospital, but decided to try Remicaid first instead. At first the Remicaid a serious diet overhaul helped, but now the disease/inflammation is very active and my most recent scope in January showed low grade dysplasia. So it was pretty much decided for me. The timing kind of stinks because I’m a single dad to a very active 4-year-old, but I’m trying to look at the big picture. This summer might be shot due to the surgeries, but next summer, if all goes well, hopefully I’ll be feeling better than I have in years and we’ll be able to travel and do stuff that I hadn’t before. Fingers crossed for both of us.

  23. Hey, keep me posted on how the surgery goes and how you feel after. I am sure you will feel so much better, I couldn’t believe how much better I felt. And here’s to all our summers being great and putting this behind us all!

  24. No, still waiting. The new fiscal year for the hospital starts in April, so the new budget comes in. I should get a call soon once that happens. Just was told this info the other day.

  25. Are you feeling ready for the next surgery? I am having doubts due to slow healing and pain in every joint for the past two weeks . Yesterday the surgeon told me to take as long
    My as I need…that was a relief.

    1. Hi my name is Denyse I am 49 and I was diagnosed with uc after I had aortic valve and aortic root replacement as well as double bi-pass in 2015 April. Since then I’ve been up and down with prednisolone and flaring when tapered. I tried a lot of meds and am currently on Humira. My GI thinks if things don’t get better by January 2017 I should consider j pouch. A hard pill to swallow. Scared out of my wits only God knows. I really wish you guys all the best and speedy recoveries. Cheers to the good life.

  26. I am ready, yes. I still have some symptoms like joint pain or skin issues if I am not eating a healthy diet but that is it. That’s awesome that your surgeon is so understanding. I hope you are feeling better.

  27. HI all-

    i am getting set for my takedown surgery, next Tuesday! I am very excited for this to be done and over with! I’ve had UC for almost 35 years (46 years old now.) It’s been a long haul. I’ve been dealing with the ostomy bag alright, but not my favorite thing! I have had some sever joint pains recently (over the last 4 weeks) and extremely dry skin. Has anyone else experienced this? Any recommendations? I never had any joint problems in all of my years with UC. They removed my large intestine and the joints go crazy! Makes no sense. The dry skin is a nuisance, too. Thank you……..good luck to all! Ken

  28. Takedown surgery coming up next week. Extreme joint pain for the last 4 weeks which I never had during my 35 years of UC. No meds now, so no reason for any side effects….Dry skin all over, as well. Any suggestions? Good luck all!

  29. I can definately relate to the dry skin and joint pain. I have noticed that breads and dairy, other than cheese make it much worse. I eat basically anything thats real and it keeps me good. But when I start eating snacks or packaged foods ( or anything that isnt real food) my skin and joints can get brutal. So that would be my recommendation, eating real food.

  30. Thank you Louis and Ken for the posts. In the last several weeks I have been slammed with joint pain. I asked my surgeon if my joints were being attacked because the auto immune disease no longer had the colon to attack. He said that that could happen, and had occurred with his other patients. I will definitely go back to the SCD. It was fun eating anything I wanted and I noticed that nothing bothered my stoma.

  31. Congrats Louis! My 2nd (final) surgery has been pushed to approx May 10. Had a gastro graffen enema test yesterday which revealed a very small sized hole near the j pouch. That needs to heal completely before takedown surgery. I was soooo ready to get this all over with next week. Better safe than sorry, though.

  32. I have my pre-surgical screening date for 2 May as well. Never went through that last time as it was an emergency operation. What sort of things can I expect for the pre-surgical screening for anyone who has done it? I am guessing bloodwork, ecg?

    1. I had my pre-surgical stuff for my first done surgery done a week ago. Blood work, chest X-ray, EKG, and gave a urine sample. Then I went to meet with the ostomy nurses and got info about the bag and all that. I just went back to get marked for the ostomy, which was basically just them drawing two dots on my stomach on either side of my belly button.

      My first surgery is scheduled for Thursday. Freaking out a little. (Maybe a lot.)

  33. Thanks for the info. I guess I did most of that before my first surgery too.

    As far as the freaking out a little goes, makes sense considering. Having said that, again, I felt awesome not dealing with colitis anymore. To be honest, it was great just dealing with something different, if that makes sense.

    1. Thanks for the link to your website!p. I am wondering if you feel any pain around your surgical cuts, or anywhere in your abdomen when you exercise. I met a few ostimates who cautioned me about exercising because it might cause a hernia. What are your thoughts about this?

      1. I don’t feel any pain at all around my surgical cuts. I went back to work a month following surgery and the only pain I had leading up to that point was mostly if I coughed. I mostly just walked and lifted a few very light weights. But no squats or deadlifts or anything that was going to really engage my core. Probably around week 6 post op, I started to add in some more exercising as I no longer had any pain. I had heard the same about a possible hernia after surgery but after I seen the Doc at the 5 or 6 week point, I was told to do whatever I felt comfortable with, no limits. I started to add in the heavier weights around week 12 and could do pretty much anything. I personally had no concern over getting a hernia once I was all healed up and have been able to do everything I could before since week 12. Having said that, you gotta go on “feel” and how things are progressing for you. But also I wouldn’t just right something off and worry either. I think that it has all helped in my recovery going so well.

        1. Thanks for the reply. I I am meeting with my physical therapist this afternoon & I hope I can step up my exercise program. Be well,
          Jo

    1. Struggling with healing from the first surgery, only recently stopped bleeding. I continue to have severe joint pain along with compression fractures in my back (prednisone). For anyone who is using prednisone I really recommend that you take a liquid calcium instead of the pills which may not get absorbed due to the colitis. I recently met with an endocrinologist who shared that I should have been taking some type of medication for prevention of bone loss while I was on high-level of prednisone. I am also taking a liquid vitamin D . Over the past five years I had taken calcium tablets with D, but apparently it was not absorbed and hence the compression fractures.
      Other than that I am working with a physical therapist, socializing, purchasing a new, lighter kayak, and letting my dog drag me up and down the street….I think she is now walking me instead of me walking her.

      there are multiple sites on the Internet for Jpouch support groups, check ’em out!

      1. I know a little bit about the joint pain too. I find it flares just like the colitis would. I totally agree with the liquid vitamins, I do the same. Good that you’re getting out anyways.

  34. Wow man, Im just getter into your same journey, best of luck man. I’m 32 and had my colon removed by emergency surgery on Monday. No choice, no prep, just do it or die… I will update more but I’m still in the hospital due to my surgery being exploratory and having pretty big surgery. I would love to keep in touch and offer any support I can from SoCal

    Daniel

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