Hello and welcome!

if it is any consolation to you, I felt exactly as you did for months following my takedowns.

It will take some time for things to settle down and for you to figure out what works and what does not.

others will post here, but my initial thoughts are as follows:

1. Do you have a prescription for an anti spasmodic such as levsin or bentyl. One or both of those drugs will stop spasms and cramps down there quickly.

2. Are you taking a bowel slower such as lomotil or Imodium (otc). Those will delay BMs so they are not as caustic or acidic.

3. Pouchitis is probably not a thing yet for you.

4. Many things can irritate the pouch (foods, medicines, supplements) it will take some time to figure out which if any are causing you distress.

5. Read read read. Everything you want to know is on this site as we have all gone thru what you are experiencing.

Thanks so much for the reply.

it’s nice to know it’s not all sunshine and roses for everyone right from the get go. That was kinda how it was sold before I had the op.

I don’t have any anti spasm stuff no, I’ll look into that. I do take some loperamide but find that thickens things up too much (things are pretty well formed without it) and it feels like I’m trying to pass a brick so try not to have too much.

can haemorrhoids be a problem, maybe cuffitis….I have no experience with either but I had a stoma for 4 years (thanks covid) so maybe the mussels or blood vessels are feeling beaten up as they’ve not been used for so long?

Robb….you are at 5 days post takedown…. Everything will take time..but everything will get better.. I’m coming up on my 3rd year and all my problems from surgery are all gone..even everyone’s favorite the dreaded butt burn…things do improve slowly … you will get there…. This is the best place to get help from people who have been there.. don’t hold back…ask any and all concerns you have we are here with you…..

J-pouchers are generally better off *without* formed stools. A texture more like pudding is easier to empty, with less straining. I used psyllium fiber from the very beginning, and it (along with drinking *plenty* of water during the day) keep my stool consistency about right most of the time.

Most surgeons advise new J-pouchers to gently delay bathroom trips longer and longer to “stretch the pouch.” I’m not convinced that any actual stretching goes on, but it definitely helps us learn to manage quite comfortably with fewer bathroom trips, and gives our anal canals more rest time. Straining or going too frequently can create or exacerbate hemorrhoids, which (in a vicious cycle) can make it harder to empty the pouch.

Scott gave great advice - as always. You are not alone in the lack of sunshine and roses. The first bit after this surgery is kinda rough. My surgeon had the flipping nerve to tell me I would be eating steak straight away! Ha. Not funny, Nope. I was on TPN for 5 weeks because it was an especially complicated surgery, but after that I learned what food worked for me. That's still a work in progress, but soft cooked, pureed or brothy rice is a go to.

The kind nurses gave me "butt burn" cream at the hospital - they knew I would be hurting for a while. I was encouraged to use damp baby wipes to wipe, pretty much anything to be gentle in that area. After the month of TPN, I ate cream of rice, cream of wheat, pureed food, brothy soup, nothing acidic, no beans, no onions, no tomatoes, no orange juice - nothing that would cause more gas or more "burn".  Potatoes, rice, scrambled, soft eggs, white toast, super gentle food. Warm herbal tea, lots of water.

It will take a while, but it will get better. Hugs to you.

Hi Robbiusd, I’ve had a J-pouch for over a decade. I remember after my takedown, my surgeon told me to go live my life, however, each individual has their own process that they have to go through getting to know their “new normal”/J-pouch - digestive tract. I recommend -do not hold in your bowl movement, evacuate when needed and let the air out/ gas when needed, laying in your left side knees in.  From my understanding, the J-pouch functions as a Reservoir not a colon. Therefore, whenever you have to go to the bathroom, do not hold it in for very long it can cause other problems, blockage & backup. Imodium/ antidiarrheals did not work as they caused me pain & backup. Be patient with yourself and learn what you can and cannot tolerate, chew food very well, because digestive begins in your mouth and you want to have very well chewed food to pass through. I agree with others that soft foods are great: scrambled eggs, smooshed avocado, smoothies with plain yogurt, plain Apple sauce, mashed potatoes.  If you decide to try to eat a protein like a chicken or steak, ensure that you chew very well to break down the food in your mouth so it’s soft by the time it passes through your new digestive tract.  You will get to know what you tolerate, it will get even better!

@Robbiusd posted:

Hi everyone

my first post as I’m only 5 weeks post takedown with my new j-pouch. It’s been a terrible recovery so far unfortunately leaving me to question why I didn’t just stick with the ileostomy however, here we are….

So basically, I’m in constant pain and urgency at the back end. It almost always feels like I need to go to the toilet and that my ‘exit’ it very swollen however when I get to the toilet very little happens other than it feeling like it’s turned itself inside out. I’ve read a lot about pouchitis and it sounds similar but my doctor is clueless as j-pouch’s are not particularly common and my surgeon is impossible to get hold of to ask (UK-NHS 👎🏻)  could it be that or is this just a normal part of recovery? I’ve heard this is supposed to be the easiest stage to recover from but this is the third for me and mentally the most difficult recovery!

any advice is helpful

Do you have a stoma care nurse? You might be able to have a phone consultation with one at the hospital where you had your surgery done. And if you are in the UK and haven’t already joined, the Red Lion support group can be helpful:

https://pouchsupport.org

You could try introducing smooth psyllium husk taken with minimal water just before meals. Try at first with a half teaspoon. It forms a soft gel that can cushion BMs and make them more like porridge.

I hope this doesn’t sound discouraging, but I seem to remember reaching a milestone at three months after my last op. Up until then, things were pretty sore and miserable.

Hi all.

thanks again for all your comments and advice.

little update, turns out a previous infection at the old stoma site hadn’t cleared and was getting worse, started some more antibiotics this week and it seems to of calmed everything down not sure if it was pouchitis too I guess I’ll never know but I do remember before my takedown, everytime I was a bit poorly or rundown it’d aggravate the pouch but as nothing was passing through it never caused much of an issue and cleared up on its own after a couple of days.

next challenge is my energy levels…

thanks again everyone, I’m so grateful for this forum and everyone that contributes….genuine lifesaver!

Hi @Robbiusd,

I just wanted to check back in with you and ask how you are feeling now? Your last post was encouraging and I hope your energy has started to come back to you. It's no fun - and difficult to manage every day life - when you are wiped out.  I hope you are feeling better and doing well, but it may take more time.

Best to you,

Jane

Hi

very kind of you to check in, thank you!

Everything was pretty good for the 2 weeks I was on antibiotics however when they stopped it was back to square one and I still couldn’t get hold of anyone from the colorectal team for any advice and everything seemed dire.
however, out of desperation, a bit of trial and error and no input from any medical professional I have found that taking some anti spasm tablets throughout the day along with a low dose of codeine and a few other supplements it has calmed right down, to the point it now feels like there is light at the end of the tunnel.
There’s still some lengthy toilet trips and feeling like I am empty only really occurs when it’s super loose which I don’t like because of the dreaded butt burn however the frequency is down to maybe 7 day and 1 night trip, the urgency has calmed down and so has the straining which has helped the overall discomfort.
I think there’s still a way to go before I feel like I can be my ‘new normal’ but at least things seem to be heading in the right direction.

hugely appreciate everyone that commented on this and gave advice. I think I’d of taken myself to A&E and begged someone to cut it out of me if it hadn’t been for this forum.

So glad to hear this. I will say this again:

If not for this forum, I would have been lost.

The collective knowledge of this community is unparalleled and I believe that few  doctors understand our condition better.

Hi @Robbiusd,

Oh golly, you have been through the mill. Yikes. I'm sorry. I know that "everything is good while on antibiotics" honeymoon and it is indeed heavenly, at least until the course of meds is over and day to day life comes roaring back. Yay for you figuring out how to MacGyver together a semi-workable combo of drugs and supplements to help your guts calm down in these first few months after take down. It's not easy. And it does get better. I am hopeful someone suggested to avoid acidic food, that can help ease some of the dreaded butt burn.

I also had times when I wanted to beg someone for a colostomy rather than live with my  j-pouch, but after 16 years, the j-pouch and I have learned how to live with each other (albeit with occasional temper tantrums on both our parts). Thanks to this forum, I learn a ton and have the ongoing comfort of genuine support and best of all, knowing I am not alone.