Jpouch Struggles

Hey! 

I can't remember much of my first few weeks but I remember them being hell, especially going through this at the age of 15.

There is one value I will always stand by though, and that is that this is the best possible outcome ever. It is so much better than the bag, by miles. This may be because I had the bag at the age of 14, in and out of school with it, but still. My worries are little to none. (Usually, as always there are tough times, but it'll all be over with sooner or later) 

Hopefully these weeks initially will clear up as the pouch settles in. If you have any concern, email or get in touch with your surgeon / consultant, their advice will always make you feel better. 

TL;DR - There is always light at the end of the tunnel. 

Good luck, 

James 

is normal after takedown i was going about 20-30 times with no meds and my butt was sore i cannot sit everywhere if sit problem but now i am 6 mounths and going 6-8 times sometime 10 with(dunno if is normal this?) no use immodium if i use immodium i go 4-6 times.with no immodium if go 10 is normal? 

but will come time and all will be settled down need time!

One year out-going average of four times a day-no butt burn at all.  For me the first few months were the most difficult and things progressively got better.  Good luck!  

Hi, Just to reiterate what some other folks have already said: It will get so, so much better. I'm a year out. I just finished fishing all day. I used the bathroom this morning and then at about 3.30. 

Really, truly, getting through the surgeries, getting the bag off my belly, it all worked out so well. And you're through the worst of it. Sometime in the next week or two, you'll see more changes (and good ones). But, for now, just go slow. Don't hurry things. Rest. Eat gently. 

The vast majority of people have good outcomes from their jpouch surgeries. (And that's even of the people on this forum...I used to come here all the time to lurk and read to make myself feel better, and I hadn't signed in for months because I was off living. Think of all the people who have had this surgery who aren't hanging around "here.")

Things won't ever be the "same" as before and you're not "cured." But you will have control and little to no pain (just cramping). 

You will get your life back, I promise. 

Just be patient, as much as you can. 

Pretty much the same for me; I'm almost 4 months out, the first two months really sucked. I'm still experiencing some troubles/issues but it's definitely better than it was the first few weeks/couple months. I know sayng this won't help you but just try to hang in there as best you can, it will get better.  Get a bidet for your toilet (you can get one for under 50 bucks on Amazon), use as many different creams as you need to try (and I've tried all of them, the one shelf in my bathroom looks like a store shelf - and I'm still using them) take Lomotil if you need it and try some Metamucil wafers.   If the pain is too unbearable you may even have to use Lidocane - ask your doctor - to numb things up. And believe it or not what also helped me also was squeezing lemon juice in water and drinking that all day long. It's a long journey but the first eight weeks were definitely the toughest for me.....

I am 2 weeks out of final Jpouch  surgery, and it is intolerable. I want to sit in a bucket of ice,  I started wearing diapers because acid or feces are always coming out of me,  when I try to hold my butt together so I don't leak out , then pee starts leaking out of my penis,  I take about 10 showers a day or night,(when I feel I am too sore and burny or too dirty to wipe myself), IT BURNS TOO MUCH!!! I don't sleep but 2 hours at a time, because I always feel,( and I do) like I got to crap. You guys say there is a light at the end of the tunnel.  I WANT MY BAG BACK!!! At least I had control, now my bowel is in control , and it is real torture,  I cannot go out of the house, else I will go on myself.  HELP!!!!!!!!  I can't take this torture,  if I had one inkling that I would feel this way by getting rid of the bag,  I would have learned to like my bag and live with it.  Now I live in the bathroom, on the toilet, before I just went in there to empty my bag.  I hate it,

I hate it, I hate it, I hate it!!!!!!

Hi JJS, 

I get it, but it really will change. You're at the low point of your body learning something new. It won't stay like this. Hang in there. Next week will be better. It won't be day by day (I wouldn't think), but I do think you'll see a week to week change. I can only speak from my own experience, of course, but I hope you end up feeling similarly. Take care.

Thanks for caring,  I hope you're well.

Hi Jjs,

im so sorry to hear you're having such a horrible time but I can relate to you!! When I wrote this post as I was at my wits end with it all and had decided I was going to have a reversal done and get my bag back. Literally in two days I feel a lot better!! I haven't changed anything but the butt burn has pretty much gone (thank goodness!!) and I'm actively trying really hard to hold on a little more so I'm not on and off the toilet every 20mins. Even managed a trip to the supermarket yesterday. That has given me hope that things truely do and will get better for you and I. It's frustrating that we get no advice from medical teams on how brutal this surgery really is though - I had no idea what I was in for and I think that makes it all the harder!!! Sending you positive healing vibes and hoping we both hop on here again soon and can share stories of improvement! 

Thank you so much to everyone who replied to my question - for sharing your story and for your words of encouragement! It's so reassuring to know others have experienced similar things and that there is still hope that things will get better. It's so great being able to connect and support one another! Thank you all X

Hi Kseymour, 

You got your Jpouch functional on the same day as me, July 20th,  I had 2 prior bowel surgeries,  9/15 colectomy after colon burst in my body and 3/16 to remove rectum and to construct pouch.  ( and the surgeon decided to cut my ureters  at the same time)  This was the easiest surgery, but NOTHING could prepare me for the aftermath. I feel the severe UC bleeding on the toilet all night was better than this,  at least I had some control.  You say that it suddenly got a little better, that means I am due for it. I'll sleep on it,  

THANKS

JJS posted:

I am 2 weeks out of final Jpouch  surgery, and it is intolerable. I want to sit in a bucket of ice,  I started wearing diapers because acid or feces are always coming out of me,  when I try to hold my butt together so I don't leak out , then pee starts leaking out of my penis,  I take about 10 showers a day or night,(when I feel I am too sore and burny or too dirty to wipe myself), IT BURNS TOO MUCH!!! I don't sleep but 2 hours at a time, because I always feel,( and I do) like I got to crap. You guys say there is a light at the end of the tunnel.  I WANT MY BAG BACK!!! At least I had control, now my bowel is in control , and it is real torture,  I cannot go out of the house, else I will go on myself.  HELP!!!!!!!!  I can't take this torture,  if I had one inkling that I would feel this way by getting rid of the bag,  I would have learned to like my bag and live with it.  Now I live in the bathroom, on the toilet, before I just went in there to empty my bag.  I hate it,

hi its will be better need time be patient me to first time i was going 30-35 times cannot sleep cannot hold cannot sit but with the time will be good now i am 6 mounths and gong 4-8 times sometime 10. with the time will be going good be patient you are warrior you are strong you accept and remove colon you are strong brave! you willl have control.

Dont be afraid with the time everything will be settled down when i was two weeks i think its cannot going better i will go 30-35 times but now i am very good all the time  i have control of my bowels ! sometime no have its not issue.

4 hours i cannot hold some time 3 some time 5. depends what eat and how much time eat.! i eat 6 times and going 4-8 times with every mounth the pouch is grown more capacity,after reversal my doctor say your pouch is now young you need to try to hold with no meds like immodium after 4-5 mounths try immodium,now the pouch can hold only one cup of your fecals what you eat but with the time its will go better more capacity to grown in your pouch

yestarday i was going 5 times 4 at the day 1 at night will be good! when i was two weeks at night  i was going 7-8 times now only 1! or two not more!

Hello, JJS.

To help soothe and heal the burning, have you got a bidet attachment for your toilet? They cost approximately $50 on Amazon, or slightly more for the version that has both hot and cold water. It's not too difficult to attach to your existing toilet. Or, there is the plastic bidet squeeze bottle. Rinsing after every BM will clear away any residue left by dry toilet paper. It's that tiny bit of residue that sets off the fire alarms. A bidet saved me in my early days. I am now 16 months with a j pouch. In my early weeks and months I was suffering terribly from burn, raw skin, I could not sit down, the burn and soreness made me weep. imalso bought a sitz basin. Place this over your toilet (seat up), fill with very warm water, and sit in it for as long as you can or until the water cools. The warm water will heal your raw skin. 

Thank you all for telling me basically the same thing,  Grin and bare it and it will get better.  Maybe tomorrow, maybe next week, maybe next month, but it will get better.

I am trying some of your suggestions, and they are somewhat successful.

I appreciate the camaraderie that we all seem to have as we are faced with the same problems.

I will post my improvements as I feel them.

Thanks for caring!!!

I have to agree with Winterberry about the bidet.  Best thing ever.  Also really make sure things are really dry before applying any ointment to the area.  I used Calmoseptine from the beginning and never needed anything else.  Everyone is different, so another ointment may work better for you.  I have heard Ilex paste mentioned in other posts.  I believe you can get it on Amazon.  My surgeon started me on Immodium, Benefiber and Lomotil around the two month mark.  I now take Benefiber once a day at breakfast and 2 Immodium at bedtime.  I only occasionally take Lomotil if I have a long day at work.  Do contact your surgeon for advice on what to do if things continue to be unbearable.

Patience. 

Even though mine didn't work out I do remember it was kind of ok for awhile.  It's a slow process.  And if you have gotten this far your tough enough to make it. 

Your pouch is newborn.  It's gonna be difficult to adjust but you can do it. 

Iliex paste worked for me. That's good advice. The camoseptine I couldn't handle. I guess because of the ingredients.  Just made my butt warmer. I can't explain it. I could feel it as when I used regular paste it soothed better.  

Good luck. It's young and it's a long adjustment period. But you have to go through it.   Day at a time. 

Two weeks is early. Very early. I was still in the hospital at that time. 

Richard.