Am I Ready For Surgery? J-Pouch or Not?

Introduction:

I’m 46 and was finally diagnosed with UC in May 2011 after having symptoms for 6 years! Been through all the meds and doctor is starting to talk about surgery. I’m scared, frustrated and getting depressed!

Am I Ready for Colitis Surgery:

I haven’t been having any success with medications for my Ulcerative Colitis issues. I’ve been in the ER a few times in the past few years for dehydration and low potassium from the diarrhea. The last time was right before Thanksgiving, I was admitted for 4 days and put on IVs for fluids and potassium while being monitored for my heart. I didn’t know that low potassium can cause heart defibrillation, so that was a little scary when they told me that they were putting me in the cardiac care unit. My doctor is starting to talk about surgery as my last option. I’m not sure I’m ready for that step. But then, I’m not sure I’ll ever be ready for that step. I saw a story from someone on this site who had Ulcerative Proctitis, which I also have along with colitis higher up in my colon. I saw that his doctor told him he had a good chance of getting cancer someday because of the Proctitis. Now THAT, scares me! I work with a woman who is about my age, 46 and I never would have known it, but she shared with me that she had her colon removed when she was 18 years old. It gives me a lot of hope when I see how great she looks and how she lives such an active life. She tells me that the J-pouch wasn’t even available when she had hers done.

I’d like to hear from people who have had the surgery and

are waiting for the J-pouch to be connected

or those who are already finished with the process.

I’ve been seeing so many different opinions from people saying they either love or hate the pouch, I know everyone has a different experience and we all heal in our own way, but I’m looking for any advice I can find. Thanks for any input you can give!

written by Katie

submitted in the Colitis Venting Area

 




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.

11 Responses to Am I Ready For Surgery? J-Pouch or Not?

  1. Tuxedobird December 25, 2011 at 9:24 am #

    Katie, I am 56. diagnosed with UC at 17, got an S pouch at 27 (precurser to the J pouch). Was pre-cancerous and exhasuted from 10 yrs of symptoms. I say do it sooner rather than later. It’s touch on your body and mind so do it while you are still young.

  2. Trent December 25, 2011 at 9:04 pm #

    Hey Katie, sucks to hear things aren’t going so smoothly. I had my colon removed this past September and going in for part two in May of 2012. My doctor decided to do it in two steps rather than the normal three since I was able to gain so some strength and health back right before the surgery day. But anyways while I wait for part two, life has been a complete 180 compared to having UC. I mean I am running, cycling, and living life. Its been amazing. I have had a “bag” for 3 months now and really don’t think about it ever. It has become second nature to me now. I have been able to just be free and have a life again, eat anything and mostly everything. I hope you find your answer soon and get back to being healthy and happy.

    Trent

  3. Blake December 27, 2011 at 12:37 am #

    Hey Katie,
    I had my colon removed 3 weeks ago from today. I am doing a 3 part J Pouch surgery. I decided to do 3 step because my doctor told me there is less of a chance of becoming impotent during a 3 step procedure, which you won’t have to worry about considering you have female parts. I was also out of options and was not gonna put the chances of my flare magically dissapearing by itself. I tried Sulfasizine, Asacol, Asacol HD, Lialda, Remicade, Hydrocortisone enemas, the SCD diet, gluten free diet and there was no sign of me getting better so I decided to finally do it. My doctor wanted me to go in for emergency colon removal because she said it was so bad, but I opted to wait till after Thanksgiving, I didn’t want to spend Thanksgiving in the hospital when I could actually be eating what I wanted for once because I was gonna get the no good son of a bitch colon removed anyway. I had it removed December 6th. I immediately felt better after it was gone. Didn’t have to go to the bathroom anymore, but I did have to learn how to empty and change my ostomy bag, but that gets easier with time. I deal with pain pretty well so the surgery and the pain that comes with it wasn’t a big deal. I still have a swollen stomach, either that or I’m getting fat real quick. It is a big lifestyle change, you do have to empty your bag quite often, I think I empty mine about 6-8 times a day, but it’s way better than shitting blood 20 plus times a day. Let me know if you have any personal questions, because I had a lot of bizarre questions going through my head when I decided to do this. Good luck with whatever decision you make!

    Blake

    • Laura September 16, 2012 at 6:05 pm #

      Hello,
      I realized that this was written over a year ago, but I have not heard of many people having this surgery done in three steps instead of one or two (I will be having the surgery done in three steps). I have just had the first of my surgeries, and will be having two more. I have been feeling okay after the first surgery. It has only been two weeks, but I feel much better than I did before as I had really bad UC. I wonder, however, if you had any of the problems that I am having. I seem to be very tired all of the time and have horrible headaches. I have never had headaches like this before. It seems to be when I stand up or go up/down stairs. Also, I am still having some bloody discharge come out back there, and it is semi-painful when it happens. I would say it’s probably once a day or every other day. Its kind of like a throbbing feeling and is just very uncomfortable. Also, how would you say the next two surgeries are in comparison to the first? I have heard the first one is the worst. Would you say you are glad that you did the surgery in retrospect? I will be happy to hear that people have normal lives after all of this. It has been a horrible year since I was diagnosed with UC. Especially being in my early 20s, I can’t go out or do much of anything and have had to drop out of school. Thanks for any advice you have!

  4. Allyson December 27, 2011 at 7:56 am #

    Hey Katie, I’m very sorry to hear that things aren’t going well for you. UC sucks! I had the Jpouch surgery one year ago. I had it done in two steps – the first step they removed the colon, created the jpouch, and temporary loop ileostomy. I had an ileostomy for 3 months while my jpouch healed, then had step 2- where they reconnected all my plumbing inside and reversed the ileostomy. My life is 110% times better with the jpouch than it was when I was sick with UC. Things aren’t completely “normal” and never will be, but I’ve learned to accept it and adjust to it as MY new normal.

    The first surgery was more difficult than the second. I’m not going to sit here and say it was easy because it wasn’t. It was pretty tough physically and mentally. But after about a month with the bag, I was starting to eat more and become more active. I was living for the first time in years! The ileo isn’t that bad. I mean, yeah no one wants to have one forever, but it isn’t the end of the world. You get used to changing and emptying it. I’d say it took about 5 weeks or so after the 2nd surgery before I felt completely comfortable leaving the house for long periods of time. I felt a lot better after 3-4 weeks but it was all so new to me.

    I would to recommend this surgery to anyone who is at their wits end and has had no success with medication. It has been a Godsend surgery and gave me my life back!! I’d go through all the pain and tears again to be where I am today. Good luck!!!

  5. vickie December 29, 2011 at 2:00 am #

    hi, i had a pouch just over two years ago, and although i cant wait to have the reversal done looking back it was really the best option. my son was 9wks old when i was admitted to hospital and diagnosed with UC. and after only 4wks i had to have my large bowel removed, as it was very badly ulcerated and almost perferated in places. unfortunely i had a couple of post op complications, an abcess the size of a grapefriut on my pancreas and a fistula, so stayed in hospital for a total of about 4mths. i have occasional flare ups of UC in the stump and am just waiting for it to calm down before my GP will refere me for the reversal, life is alot better with the pouch than before as i am no longer running to the bathroom all the time and not in pian. i have the energy to run around after my 2yr old, and yes i do have days where i wanna cry because its such a huge physcological toll. i am consantly worried that people will see the pouch but have been able to get round this by wearing tunic style tops. i do go swimming with my son and my stoma nurse recommended a fab web site http://www.vblush.com the lady who runs this site has a stoma herself and uses nothing but models with stoma’s too. they sell beautiful underwear and swim wear. also they produce an intimate range for in the bedroom so if you do not feel confidant, you can keep them on. i hope my story has helped in some way. vickie (please forgive spelling mistakes)

  6. Brad December 30, 2011 at 4:22 pm #

    Hi there I’m Brad and I had the surgery done on October 19th of last year as a 2 part surgery the final surgery was on Dec 2nd I believe 2nd or 5th cant remember exactly but by the end of January this year it was almost as if colitis never happened to me. I’m 25 years old very lean and was a good candidate for J-pouch surgery I even got to have it done laparoscopically so aside from the stoma scar the other scars are barely visible. Aside from a few accidents if I drink a lot of liquid before bed I have had 0 problems out of my J-pouch. I started out taking a lot of Immodium to help but now I dont even take that anymore. Had my surgery done in Birmingham, Al.

    • Laura September 17, 2012 at 1:55 pm #

      Brad,

      I just had the first of three j-pouch surgeries. I am 24 and would like to talk to someone my age who has this done. I also am having my surgeries done in Birmingham, AL. Do you have an email?

      Thanks,
      Laura

    • Rhonda August 21, 2015 at 2:40 pm #

      Brad,

      My husband is looking at surgery also. His dr. has said that he will send him to UAB. Who was your surgeon? Are you still doing well?

      Thanks!

  7. cheyanne February 28, 2012 at 9:04 pm #

    Do I have to go through trying all medictions before a dr will consider a j pouch surgery for me? Im on Prednisone and Colazal now. And i do not want to try 6mp, remicade, or imuran.

  8. Sara Ringer February 29, 2012 at 12:46 pm #

    Hi Katie,
    It’s a very personal thing for people deciding which surgery to have. And we are all so unique that some of us live with our jpouches and love them (like me) and they fail for others or give people complications. Since you are looking for personal experiences I did some YouTube videos on my life with a j-pouch you can check out if you want…if you go to my blog agirlwithguts.tumblr.com there is a sidebar that says watch my videos and you can find it from there. I found that surgery was the right choice for me. My colon had to come out anyway it was so diseased. I am glad it did because nothing has been as bad for me since as it was when I had my colon. It was later discovered that I actually have crohn’s disease and now I am on remicade but even still…I LOVE my jpouch.

    Sara

Leave a Reply