9 months post stage 2 of j pouch surgery: stay with loop ileo or go with j pouch?

Hi all,
I have been reading posts on this site on and off for years during my battle with UC since 1999. Last fall, I found myself very sick, in the hospital, and had to make a decision within 2 days to get surgery or try Remicade (which they told me would only have a 24% success rate in my particular situation). I opted for the surgery, which I believe saved my life. However, my surgeon only presented the J pouch option. Thus, I got the first of a 2 step J pouch procedure in Sept., 2014. I had heart complications (tachycardia - heart beating too fast) from the surgery and the second step of the surgery has been delayed. It is now 9 months since the first step and, if all goes well at my cardiologist appt. at Mayo at the beginning of August, I will have the option for the takedown.

Now I am questioning the J pouch option. The majority of what I read online is fraught with complications. I have been to an ostomy support group and a CCFA meeting in my area, but no J pouchers to be found. My surgeon told me to watch his online video of J pouchers when I requested to speak to someone who had had a J pouch. Not cool. I am specifically concerned about leakage and frequency. I am doing pretty well with my temporary loop ileo. But I am wondering what kind of issues I will have if the J pouch is left in place and not reconnected? Any tests that have to been? What happens to the tissue? What ramifications are there because part of my small intestine will never be used? Also, is it difficult to live a life with a loop ileo vs. an end ileo and what type of complications can arise from this?

Just a little about me: I have two young children, enjoy backpacking, boating, hiking, wrestling with my kids, and rollercoasters, and work in a job that requires me to interact and play with small children on and off the floor all day.

Sorry such a long post. As you can see, I am very undecided and am not wanting to make the wrong decision. Hoping some of you may have some advice that makes me say, "wow, hadn't thought of that!" I know your advice has helped before. Thanks in advance. Fighting this disease takes a lot of inner strength. I wish my best to all of you.

First of all, it is usually OK to leave an unused pouch in the body indefinitely, but you will have to talk to your surgeon about that if you're considering going that route. The more important thing is that temporary loop ileostomies really should be just that, temporary. There is a lot more tension on a loop ileostomy than an end ileostomy and it's more prone to issues like obstruction, prolapse, and retraction. I can't speak for your surgeon but if you decide to stick with an ileostomy permanently, I would imagine he will want to give you a permanent ileostomy (ie an end ileostomy).

Second of all... I am a happy j-poucher. I think that j-pouchers tend not to attend ostomy support groups because a) most j-pouchers are happy with their decision and don't need support, and b) ostomy support groups skew strongly towards patients with "external" pouches. I'm sorry your surgeon didn't put you in touch with a j-pouch patient you could talk to in real life. Have you tried asking your GI? They might have some contacts or resources for you.

You already have the pouch, so the hard part [surgically] is already over. We usually tell people to be sure they want the j-pouch because it's a big surgery and it's small intestine that you can never get back, but... that part is already done. Relatively speaking, reversing your ileostomy and trying the j-pouch is not a complicated procedure. There are definitely people who are unhappy with their pouches, some very much so, but there are also lots of people (myself included) who are very happy with the j-pouch. I really didn't mind my ileostomy, but I'm glad that I went through with the j-pouch.

Hi KeepMovinOn

Oh, I can definitely sympathize with your being undecided - this is one of the biggest decisions you will make in your life, and a rather permanent one at that!

I had my jpouch for 18 years, and the first 15 years were pretty great! After nasty UC I welcomed getting rid of my colon, and did well with my temp ileo between surgeries. Yes, with the jpouch I had to become accustomed to a new normal, but I went through 8 years of university, countless trips and many happy times. Yes, I would get pouchitis a few times a year, but this was always well taken care of with antibiotics - and was never nearly as bad as my UC flares.

As the jpouch ages, some other effects can happen, as is the same with any part of our bodies as they age. I went through three years of chronic pouchitis refractory to meds, incomplete emptying, and incredible anal pain and spams. I knew it was time to have my j removed in favour of a perm ileo. That was in Oct '13 and while it was a difficult recovery, I couldn't be happier!

Everyone has a different story, and it is important to think long term in this. Most importantly, find yourself the best surgeon you can and make sure you get all of your questions answered before you make any decisions.

Keep us updated and big hugs :)

     Boy, each case is really individualized in this forum, isn't it?  My surgeon told me I was too high a risk for j-pouch.  That in my case, it would require three operations and be tougher on my system than open heart surgery.  Didn't make a difference to me...I just wanted my life back!

     Did they say what caused your heart complications?  Was it the anesthesia?  I can understand that happening.  When I had my very first colonoscopy back in 1998, they gave me Demerol and some other med to put me out...well....my BP soared up to 220/110!  All I remember is that I thought the top of my head was going to blow off.  I never saw doctors scramble around that fast in my life!!  SCAAAAAARY to say the least.  Took an IV out of one arm and placed another IV in the other arm.  Then I started vomiting.  They wheeled me out into the hallway and there I lay for six hours.  This was done during my hospitalization.   The doctor told me I was allergic to the Demerol.  I didn't know because I never took Demerol before that .  The next day I had to go through the colonoscopy but they used a different anesthetic.  That was when I was first diagnosed with ulcerative proctitis.  So, after twelve years of suffering, on countless meds...trying Remicade and then Humira and seven years on 6MP (which did nada)....I told my GI doctor I had had enough.  He wasn't a happy camper, but hey...tough bananas.

      I am happy as a clam with my end ileo.

@KeepMovinOn, oh no, I'm sorry if I implied that you should have considered your decision more carefully! I totally understand that often these decisions are made for us in the moment and it's only later that you really understand what's been done. Unfortunate but it happens and it's certainly not your fault!

What I meant was that I think that whether you decide to go forward with the j-pouch or not, at this point, is not as "big" a decision as if you didn't have the pouch inside you already. You'll see that a lot of the rhetoric around what to decide has to do with the fact that getting a j-pouch constructed is a "big" surgery, but that is already out of the way for you, so I think you can afford to be *slightly* more casual in your decision here. In other words, if you want to give your j-pouch a try, knowing you could go back to an ileo if need be, I think that would be fine.

@Christine1946 - Wow, that sounds really scary! Glad you came through the allergic reaction okay. As for my heart, they are not sure what caused my heart to become tachycardic. I have had all kinds of tests and even been sent to Mayo. Mayo says there is nothing structurally wrong with my heart, just beating too fast. So, they are starting with the hypothesis that it is from deconditioning since I was so sick and malnourished. Could barely walk from the car to the house when I got home from the hospital. So, I have been doing a cardiac rehab program since April and will return in August to have the tests repeated and see if my heart is behaving itself better or not. Walked, jogged a little for 2 miles this morning!

@ PoucherInTo - I am so sorry to hear of your difficulty with fertility. My heart goes out to you. You have been through a lot, having to start this process at such a young age. I am glad the future is looking brighter for you. And you are right, doing well with the temp. ileo has definitely clouded the water for me.

@ Pluot - No worries! Just wanted to make sure I clarified my history. It is so difficult when you are not given all the information or are rushed in your decision, and then need to just live with the consequences. Interesting viewpoint that the "big" surgery is already over. That is true. I think I am more worried about life with the J pouch than the takedown surgery itself. Wanting not to throw away the quality of life I have now for something that is worse...on the other hand, if the j pouch functions well, I will be able to do more than I can with my ileo! So...boy, do I wish there was a crystal ball. We probably all do, right?

@rdm - Do you know of any factors that might indicate the pouch is prone to failure? My surgeon has only said age and if they are not sure if the person only has colitis. Other than that, I have heard of no other factors. I read a post on here recently that said that Cleveland Clinic has more testing, etc. they do to determine if the pouch will have good functioning... also, you mentioned that a fair amount of people have a bit of nighttime leakage - how do you deal with that? Do you have to get up in the middle of the night and change sheets, etc.? Just looking for tricks of the trade if that happens to me. Also, you said double digits is not at all unusual for frequency - was that for people that have problems with the pouch? I believe if that were the case for the successful pouches, it would feel similar to colitis...


My surgeon has told me that I can leave the J pouch in and the temp. ileo in place and has not mentioned that there would be any issues with either one of these options. Hasn't mentioned prolapse, retraction, etc. I feel that I may need to ask him about these more pointedly (since you all have said they can be problems) and maybe get a second opinion as well.

My husband, who has been amazing (I am a very blessed woman), asked me the other night, ""What answer do you need to be able to make this decision?" My answer was, "If something goes terribly wrong in surgery, I need you to be able to give our children a good enough reason for why I decided to go through with it." I understand that convenience and image are very strong reasons for some. Personally, for me, I am okay with those things. I have lived with the temp ileo for 9 months and figured most things out. For me, I need more reason. One thing I continue to think about is my kids have lots of growing up to do yet and I want to them to have a fully engaged mom by their side. Every time I discuss with my husband all the things I miss doing with the kids, I get very emotional (i.e. having my kids jump up on my lap, rough housing with them, my son doesn't want to give me big hugs anymore because he is afraid of the bag, jumping/diving into the water off the boat, cliff jumping (which we do every summer), rollercoasters, even playing catch - my son has a pretty good arm and it almost hit my stoma once and now he is timid to play and I am a bit as well). My husband believes, this is my answer. I want to be fully engaged with my kids again. It sounds like those of you that have a fully functioning pouch can do these things. Just wish there were a crystal ball to know that I wasn't going to be one of the unlucky ones and then my kids have a "sick" mom again....