Things do get better

Andy so glad you are doing better!  Positive news is always goid to hear!

Wonderful news...Congratulations...it sounds like you are doing everything right...and learning what works for you which is really all that you need to do...

Keep us posted.

Sharon

looking for advice and tips I'm only a two week jpoucher I'm still struggling with what to eat and what not eat then today I took a really big hit in the wrong direction my old ostomy site started leaking a milky ordorus fluid was to by my surgeon that this is normal and just let it drain then my nurse came to do my dressing change and she said this is not normal so I'm basically confused and frustrated

Hi michaelc78. I'm not expert but will happily share what helped me.

If im honest, the first 2 months is tough. You have to be prepared for ups and downs and frequent trips to the loo. I had several trips back to urgent care as I had several symptoms of pouchitis, which Im not convinced was and was just early days. Once I got on loperamide it seemed to help to slow things down. I also had spells of eating marsh mellows to bulk up. 

For me early on, I kept to a low residue diet. I downloaded a FODMAP app too, which helped a little to see what was in foods. The things that seemed to go down ok were mash, chicken, Rice Krispies, soup and bread. I had a few weeks of a limited number of stuff, as once you find what works, keep on it to help the Pouch to heal.

Things that still irritate me:

biscuits, tomatoe based stuff, lots of cheese, fish, chips, too much yoghurt.

Trying to find foods early on is not easy but it's definitely a trial and error as everyone seems different. 

Make sure you drink plenty of water early on and not things like apple juice or sugary drinks. Also watch the caffeine intake. 

In the early stages things are very sore and old ostomy sure was very tender. It takes ages to heal too. In terms of your site, I'd be tempted to get it checked to make sure you haven't got an infection. 

Hope it helps. 

Andy

I eat mash potatoes eggs chicken pasta without sauce and whole wheat bread I have an appointment for that at 9 am tomorrow to see what's going on yeah I had drainage in the site for days but today was the first day it really started  running like a waterfall so we will see how that goes tomrrow maybe I should try marshmellows I never tried that yet

I had a drain in a long time after my second operation and that was milky colour at one stage, which was due to an infection. Hope you get things sorted tomorrow. 

Nice to see you're improving, Andys. I'm around 5 months post takedown, had an appointment with my surgeon today actually and he's really happy with my progress because I'm only going around 4 or 5 times a day and the consistency is good if I'm not drinking loads of tea/coffee and stuffing my face with chocolate. (Still taking a couple loperamide tablets twice a day) but I'm sure that'll reduce even further as it has done since leaving hospital.

One question, do you experience any urgency? That's the only thing that's bugging me at the minute, apart from that, everything is really good. I'm hoping it'll surpass over time.

Andy that's what the color of mine is atm I talked to the nurse at the Drs who works with my surgeon today she told me that it's is normal for it to be like that but my home nurse though otherwise so she called my dr to get this appointment

Jordy I'm at 9 BMs a day after post take down don't know if that's good or bad bad but my consistency is different from day to day some days it's watery other days it's like jelly don't know if that because of what I'm eating or not but and tips would help

Hi Michael, I see that you're only two weeks post-takedown... I wouldn't make any sort of judgement yet at all. Two weeks post-takedown is unbelievably early days. It took quite a while for my consistency to at least start to improve after my takedown. I just keep telling myself give it a year or more because it can easily take that long for things to fully settle.

Even if you are eating plenty of starchy foods to thicken up your output, your bowel is still in overdrive and not settled just yet so don't be too disheartened if it is watery. I have those days as well. I drink coffee and tea, eat chocolate and other foods that causes a watery output, even though I'm still taking Imodium. (I am still prone to a bit of butt burn now and then if I'm not careful with what I'm eating as well)

Just ask your surgeon on your next appointment about Imodium, and if you're already taking it, ask about boosting it so you can have a bit more rest at night and through the day. I was on around 8 Imodium tablets when discharged from hospital but now I'm down to 4.

(Snack on Jelly Babies and Marshmallows through the day, it can help)

thanks Jordy I will do that I just hear that alot of ppl are three weeks out and only going 4 -5 times a day I don't know how but that has dishearted me a bit I'm afraid to even try coffee or tea cuz I do not know what will happen to me so I stay away tonight for dinner I had baked chicken pasta and scrambled eggs and so far so good no bm in about 3 hrs so I think I'm gonna be ok

Mate, you have to remember that we're all different, which means different recoveries. There's plenty of people who had a good consistency when leaving hospital after their takedown surgery, whereas others take months to settle like myself. Just take it as it comes and try not to compare your recovery to others. Hope things get easier soon for you though!

me to and thanks

michaelc78. I think 9 bms a day at 2 weeks is pretty good. I was hitting 15+ at even 3 months. I'm now down to 6-8 which is about average but like jordysimo, I do enjoy abit of chocolate and tea/coffee during the day. Maybe I should try jelly beans instead. 

Jordysimo. I've only really had urgency in the first 3 ish months, which was not all the time but control was not as good as it is now. This also didn't help as during that time I had pouchitis like symptoms. Now, I tend to have differing degrees of my body telling me I need to go loo. The majority I'll get an urge / feeling I need to go but can hold it for a good 30 mins - an hour, even more sometimes. There are the tImes where I get an urgency, can pass a bit of gas and that will last me for up to 30 mins, whereas sometimes I have to go within like in the next 10 mins as sore holding it in. This tends to be vary depending on what I eat. Fish in breadcrumbs tends to make me do the latter.

I too keep telling myself it's early days even st 6 months and that there's still improvement to be had until the year milestone. 

yeah I try not eat after 5 and I don't drink coffee or tea or any caffine I've been maintaining my day on eggs potatoes baked chicken pasta with olive oil and garlic lots of peanut butter crackers  once in a while I'll have a turkey and cheese sandwhich