Doug, plenty of folks do great with an end ileostomy, and almost everyone does less well with a loop ileostomy. Takedown is a smaller procedure than transition to an end ileostomy, so turning on your J-pouch is the easiest thing to do at this point. It might be worth asking them if they can do the takedown sooner, since your loop isn’t going well. Do you have specific concerns about the J-pouch, or is it a more general fear?

Scott - you are wonderful for taking the time for support.  What scares me about hooking the J Pouch up is that I am putting out 3,000ccs of fluid daily - about 12 bags a day - I feel trapped - I know the JPouch will absorb more - but I feel without the ability to take Imodium/Narcotics/Lomotil (I am deathly allergic - I know sounds nuts) I will be doing 20 bowel movements a day.

I had high output with my loop and so many issues. In fact they had to delay my takedown surgery for 5 days so my skin could heal because my bag would not stick, just constant leaks the day before. It was horrible. Metamucil helped with the loop. I had takedown 8 months ago. Has not been perfect, few cases of pouchitis and I'm getting scoped on Nov 5th to see what GI recommends to improve all around function. However, today has been a great day! I'm at average 8 -10 times a day, which sounds like a lot but is really very manageable and expected to improve. I rarely use immodium or any meds at all. Metamucil has not worked well for me with the pouch, seems to increase my output. I eat anything except raw veggies and salad, up once or twice a night, rarely watery stools. Generally applesauce consistency. In my experience the loop is no indicator as to how your pouch will function. Go for it and keep in mind it takes time, experimentation and patience . Month to month improvement!

Kmiller - thanks so much.  I gives me much relief to hear your story.   If you don’t mind me asking, when you go 10x in a day - how do your drive somewhere or go out to eat or a work?  I am very afraid.

@Doug K posted:

Kmiller - thanks so much.  I gives me much relief to hear your story.   If you don’t mind me asking, when you go 10x in a day - how do your drive somewhere or go out to eat or a work?  I am very afraid.

Doug, even with higher numbers of bathroom trips the key is that they aren’t urgent. For most of us they can be put off for quite a while if necessary, even for hours (though that can get uncomfortable). Going out somewhere is no big deal once the pouch has stabilized. High-output loop ileostomies are a fairly common problem, but high-output J-pouches aren’t. A J-pouch should generally work better than an end ileostomy, since it has the extra small bowel as well as a reservoir.

I have not had issues when I'm out. In fact, I generally go less when I'm out because I'm not home thinking about it and easily accessible to a restroom. We drove to my moms 6 hours away and no need to stop once, except when hubby needed the bathroom break. Most public places have a restroom. Restaurants certainly do. For me if shopping and dinner, I shop first then grab dinner then home. Its not been the issue I thought it would be. And some people do much better than what my progress has been! You won't know until you try. Also, I was scared to try to eat anything or do certain things and a lot of that was based on what I read or thought. When I actually tried new foods and getting out, it was all good. Some trial and error. I've also found even when output is watery for some reason, I've got control. 8 months, maybe 4 small leakage issues if I waited to long and pushed it. And I mean small issues. Worst case scenario you decide to go with end ostomy same day, but best case you have a well functioning j pouch. I was scared too. Its very unknown but I'm glad at this point to be on this side of it

Thank you KMiller,

I have deep gratitude toward you for writing your note to me.  I would be silly to not try this JPouch out, and see how it goes.  I don’t even think my surgeon would support cutting it out before I even used it and going with an End Ileostomy.  I need courage here and I am trying to muster it.  Thank you for your support.  I promise to pay it forward one day soon.  I will keep you in the loop and try it to post to many emergency calls for help.  

I'm in the same boat as you. I'm 9 weeks out from jpouch creation. My takedown is in 3 weeks. I'm extremely excited for my takedown. I had an end illeo for over a year and never really had any issues. My loop illeo is very hard to deal with although I've kinda figured it out recently. After my surgery I was miserable and really questioned my decision. My skin was so raw I was in pain like every minute. Metamucil helped me sooooo much. It was pure liquid and that's what was eating my skin. Right now I eat twice a day and I drink metamucil right before my meal and it helps immensely.

Good luck. I know it's easier said than done but just stay positive. You are almost to the finish line and you will be getting rid of your temp illeo.

I have heard of plenty of people that have went from J-pouch to end ileostomy and they are doing wonderful!!! But you are soo close! I would recommend you get hooked up to your J-pouch and see how everything goes, you are to close to the finish line to give up now. If you go all the way and it does not work out, at least you can say you tried everything! Please finish this road before giving up! Most of us have had ileostomies on this site, tiredness is very common, trust me and so is dehydration. Try the J-pouch surgery; You can do this Doug, I believe in you

Jaydog - you are a saint.  I had the end for a year and was super happy - but also knowing that I was going to get it off soon - I wonder if it was not a fair judgement.  I am six weeks out and struggling. I hear things slow down once you get hooked back up.  I just am trying to stay positive, but it’s not in my nature after 25 years of being sick.  Who is your surgeon?

Thanks Lauren - you are the best.  You made my night.  When this is all over - and Covid is done - it would be great to have you out to New York!

@Doug K posted:

Thanks Lauren - you are the best.  You made my night.  When this is all over - and Covid is done - it would be great to have you out to New York!

Thanks Doug!!! I always love it when people like my advice or when it helps them! Comments like yours outweigh the mean people on here lol. I have never been to New York before, but if go there someday, I am definitely going to see you!

@Doug K posted:

Jaydog - you are a saint.  I had the end for a year and was super happy - but also knowing that I was going to get it off soon - I wonder if it was not a fair judgement.  I am six weeks out and struggling. I hear things slow down once you get hooked back up.  I just am trying to stay positive, but it’s not in my nature after 25 years of being sick.  Who is your surgeon?

Ya I was struggling bad for the first 5 or 6 weeks then I kinda figured out my situation. I was constantly leaking and I was in huge amounts of pain because of my skin burning. I change my bag every 2 day no matter what. I could probably go 3 days but why risk it. Like I said at this point I'm 3 weeks out from my takedown and I can't wait.

My surgeon is dr valente from the cleveland clinic and he's been great. He didn't do my first surgery but he did my second and he'll do my takedown. Just stay positive. Your mind can be your biggest enemy or your biggest asset. You are less than 2 months away from getting rid of the stupid temp illeo. It will go by like nothing and soon this will all be a memory and you'll be helping someone else on here.

@Jaydog posted:

Ya I was struggling bad for the first 5 or 6 weeks then I kinda figured out my situation. I was constantly leaking and I was in huge amounts of pain because of my skin burning. I change my bag every 2 day no matter what. I could probably go 3 days but why risk it. Like I said at this point I'm 3 weeks out from my takedown and I can't wait.

My surgeon is dr valente from the cleveland clinic and he's been great. He didn't do my first surgery but he did my second and he'll do my takedown. Just stay positive. Your mind can be your biggest enemy or your biggest asset. You are less than 2 months away from getting rid of the stupid temp illeo. It will go by like nothing and soon this will all be a memory and you'll be helping someone else on here.

Oh great! Let me know how your takedown goes in 3 weeks! If you have any questions about it, you can definitely ask me if you would like. My takedown was almost 6 years ago

Thanks Jaydog and Lauren.  Supper motivating!  Also - Cleveland clinic is the best in the world.

I had a terrible time with a loop ileo. It was constantly leaking and output was about 2800 mL. With my j pouch, I only go 7 times a day. So a high ileo output doesn't mean a high j pouch output. I do take 2 Imodium before bed to control nighttime incontinence. But I don't take any other bowel slowers and I eat whatever I want.

I was supposed to have a 2-stage surgery that avoided the loop ileostomy, but things went sideways and my Jpouch leaked right away.  Peritonitis and then urgent surgery to give me a loop ileostomy.  That thing was horrible, I was housebound,  the output was burning water that ate up my skin.  The shape of the loop being uneven made getting a good seal impossible.  Ugh I can recall sitting and watching the bag fill up like a hose was turned on - whatever I drank just ran right out again.  I was too skinny for the first and only time since childhood.  I was so excited to go for my final surgery and get the jpouch connected again.  Yes the output slows down considerably!  My doctor said it takes a full year for your body (including your mind) to adapt to the Jpouch and you will see gradual improvements the whole time, and that proved to be the case. I do not take any medications at all, or any bulking agents.  My poo varies from sometimes watery to sometimes too thick to empty well.  Mostly it's just runny mush, which I can empty well.  I am fortunate to have perfect continence and can hold it for a while when necessary (though that can, as Scott said, be uncomfortable).  From 4 to 12 times a day, depending on what I eat and other unknown mysterious to me factors. 

Many people here have experienced anxiety and/or depression.  A chronic incurable illness will do that.  Sometimes I mourn for my lost health - I was so strong and fit before the UC started.  But honestly the Jpouch is far better than the horrible painful bleeding UC, far better than wearing the appliance with the end ileostomy, and far better than the leaky loop ileostomy.  My only therapy is  running 5 or 6 days a week (usually first thing after emptying in the AM).   But if you feel truly depressed you can and should get medical help, it can change everything.

@Doug K posted:

Thanks Jaydog and Lauren.  Supper motivating!  Also - Cleveland clinic is the best in the world.

You are welcome Anytime The drinks I suggested to you: Pedialyte, orange juice, gatorade, and fruit juices- I forgot to mention V8 Juice too. And eating potatoes too.

Thanks Kangaroo, Girlunky, and Lauren - I am sorry for the late thank you.  I had my first real day back at work then crashed for a few hours.  Your feedback and stories and courage have helped bring me up.  I am grateful.  I have already implemented advice from so many that have reached out to me.  What a wonderful support group.  I hope when I sort my health at I can support others.

@Doug K posted:

Thanks Kangaroo, Girlunky, and Lauren - I am sorry for the late thank you.  I had my first real day back at work then crashed for a few hours.  Your feedback and stories and courage have helped bring me up.  I am grateful.  I have already implemented advice from so many that have reached out to me.  What a wonderful support group.  I hope when I sort my health at I can support others.

You are welcome!!! Anytime And you are already a great supporter! You uplift us with just being nice

I don't think I can really add to all of the above but ha, I will anyway! It's one of those decisions that seem like an either/or. I get an end ileostomy or I get a j pouch. In my experience, the end ileostomy was quite manageable. The loop was ongoing hell. The j pouch was also very challenging and I just wanted to a) go back to the end ileostomy or b) just go back to colitis for the first 4 months at least. However, it certainly improved but really improved and I am now grateful that I did it (j pouch). However, if it became extremely problematic I assure myself that I really can go back to the end ileostomy if it comes to that. I guess what I'm trying to say is you might regret not trying the pouch but if you end up regretting the pouch it doesn't mean it's forever (but  give it a year before deciding to give up on it!)

I found  that neither  Imodium or pain meds other than regular Tylenol were very helpful but I sure would not want to go without psyllium (metamucil). But your doctor will guide you on those.

We are all very different and will experience things differently... output, pain level and tolerance, what we can eat/ can't eat (for example re above post, fruit juices and potatoes are both troublesome for me) You'll find your way I'm sure.

JHemdrix,

Thanks so much!  Good stuff.  You are right - it’s not either or.  I am going to try to stop thinking negatively - suck it up for the next 10 weeks - and get the takedown and give it a year.  The JPouch is built - it will give it a go.  Without this support site - I would have have had a tough time coping.  I really appreciate the ability to share my struggles on line, rather than bringing even more stress to my wife and 3 daughters.  Thanks to everyone.

@Doug K posted:

JHemdrix,

Thanks so much!  Good stuff.  You are right - it’s not either or.  I am going to try to stop thinking negatively - suck it up for the next 10 weeks - and get the takedown and give it a year.  The JPouch is built - it will give it a go.  Without this support site - I would have have had a tough time coping.  I really appreciate the ability to share my struggles on line, rather than bringing even more stress to my wife and 3 daughters.  Thanks to everyone.

You are welcome!

Happy Halloween!

Hi guys - thanks for all of the support.  Update - I needed to go into the hospital because my recent bloodwork after 7 weeks of high out put my kidneys into minor failure.  I had a PICC line put into my arm and I am able to give myself IV treatment at home so I can work.  Needed to get back to work.  I feel a million times better.  The dehydration and thirst I felt was unearthly, and now it’s better.  Not sure about takedown surgery for a while - but I am okay for now.  Thanks again.  Doug

One hurdle at a time -  so glad you are feeling better.  Having to go in the hospitaI is no fun, but it's great when you get relief.

I worked from home after all my surgeries, and it helped keep the "poor me's" to a minimum. 

My surgeon suggested I drink extra, not with, but between meals.  Plus when I had the loop ileostomy I drank sports hydration beverages, and added extra salt when I was craving it.

@Doug K posted:

Hi guys - thanks for all of the support.  Update - I needed to go into the hospital because my recent bloodwork after 7 weeks of high out put my kidneys into minor failure.  I had a PICC line put into my arm and I am able to give myself IV treatment at home so I can work.  Needed to get back to work.  I feel a million times better.  The dehydration and thirst I felt was unearthly, and now it’s better.  Not sure about takedown surgery for a while - but I am okay for now.  Thanks again.  Doug

OMG!!!!!! I hope everything will be okay!!! I am sorry this is happening to you!!! Hope things get better!

Your allergic to loperamide??? Have you tried Cholestyramine?

Thanks!   I feel better already.

@Doug K posted:

Thanks!   I feel better already.

I hate that you are going through this! I am glad you feeling better though

I had the opposite problem with the bag ironically.

I cannot wait for your takedown, that will be much better!

How long do you need the picc line for???

PICC will stay in for a month or so.

@Doug K posted:

PICC will stay in for a month or so.

I see, at least you are great with it ans staying hydrated! You have home health coming?

Yep - she will come every few days

Thanks for following up Lauren - you have been a great support to me.  This entire site has been amazing.

@Doug K posted:

Thanks for following up Lauren - you have been a great support to me.  This entire site has been amazing.

Oh good! I am glad you have great home health! I had home health too and it went pretty good. I am soo happy you are doing okay

And of course! Please continue to keep us updated, you have been doing such a great job with that! I wish more people did that too, you are very persistent which is very very perfect!

What medicines are you taking through your picc line??? Is it just hydration stuff???

Just saline. Hydration- that’s it

@Doug K posted:

Just saline. Hydration- that’s it

Oh that is good!! That is the right thing to do for sure!!! 6 years ago, they were changing my hydration bag like crazy! It makes you feel good!

Over the course of the month, you might notice a difference in your skin: looking younger, less acne, more glowy, more hydrated looking skin, etc. I noticed that a lot when I was on continuous fluids too.

Hello Doug K. I am wondering if you are  rehydrating through the picc line (and thus the thirst and dehydration has changed) or is it that you're administering medication for the kidneys which in turn improves hydration and that's why you're feeling better? I ask because I know someone who is unable to talk above a whisper unless he's getting iv fluid in the hospital. I was hoping he could perhaps get hydration through the picc at home.  Completely unrelated to your post,  know, but hoped maybe it could help him. Thanks.

Hi JHendrix,

My PICC line is just for hydration- and in turn I was told it would indeed take stress off of my kidneys.  I was creating too much BUN and Creatine - with the high output, which would injure my kidneys.  As for as the hydration- it saved me.  I could hardly speak I was so dry.  I felt like I was parched beyond belief.  I gained 14 pounds in three days with the fluid from the PICC (seriously).  It is with a try for your friend.

Thanks for that information. Is the plan for you to do this short term until your take down, if you've decided to indeed do that.  Is it likely that the j pouch would reduce the output and, by extension, the strain on your kidneys? Do I have that right?

Yes - that is what I am praying for.  Or I am in big trouble.