HealingWell
Search Close Search
☰

J pouch questions. Please help!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/23/2018 11:32 AM (GMT 0)
Hi all, I'm due to have my j pouch surgery on June 12th. I am trying to get as much info as I can as I really want things to go straightforward and be as prepared as I can be to make the recovery more comfortable instead of leaving it all last minute.

I will start with the diet. Is there a specific diet to follow, are there any foods that are a no go for the first few months. Another concern I have is the butt burn that everyone keeps talking about. Can anyone recommend a good barrier cream or any other hints and tips to avoid the butt burn. Was thinking about buying a portable bidet as i've been told that wiping is not a good idea. What toilet paper or wet wipes are good. I just really want to avoid the butt burn so please suggest creams and ointments that help and what your routine is. Do I need to buy incontinence pads. I'm worried about leaks during the night but I'm not sure what pads I should get. I have also been told to invest in a good probiotic but should I start taking them right after my operation or wait a while. Does anybody also recommend anti acid tablets. I have been told that they are bad for you long term. Is imodium the best medication to slow things down and bulk it up a bit or are there other meds that help. I know all of this may seem random and I have no idea what I am talking about but I am starting to panic so any advice on diet, creams, medication, pads or any other hints and tips that you think would be helpful would be very appreciated. All information is truly welcome. Thank you so much for reading. I will be sitting with pen and paper getting ready to right the j pouch supply list.
Thanks.
Posted 5/23/2018 12:28 PM (GMT 0)
Do you have an ileostomy now? Anyway, no need to freak out.

Butt burn....It will happen. There's no avoiding it, it gets better over time but it will happen 100% guaranteed to everyone with a jpouch. It's nothing to freak out over. I've never used a bidet and use charmin ultra soft for TP and just any old wet wipes if things get a little messier. In my early days I used calmoseptin as a barrier cream against butt burn but be careful because too much moisture will also cause skin to get irritated and raw so don't use it too much. My surgeon recommended baby powder vs. moisture build up.

Leaks at night, I still have them sometimes now 1.5 years after surgery. It's not a huge deal, just an annoyance. It happens to me if I ate something weird my output is very watery and in my sleep I pass gas because I'm that passed out. Sometimes just a little extra comes with. I've learned that underwear I buy has to be dark and not white since it can easily be stained these days. Just something you learn to deal with. I'd guess any pad will do if you're worried about it. I slept with depends adult diapers for the first few weeks.

Diet, eat what you want. Avoid roughage and too many nuts early as this can still tear up your staples some. The less spicy and acidic, the less butt burn. Some foods such as bananas, breads, pasta, peanut butter etc. will thicken your output more than others. Immodium can help, I don't take it anymore but did for a while. Lomotil is prescription strength immodium but I've read it can have withdrawal symptoms so be careful with that.

Probiotic I'm not sure when to start but VSL #3 is the standard for pouchitis.
Posted 5/23/2018 1:07 PM (GMT 0)
Bull did an excellent job of answering your questions.

I have had my J-pouch for 3 years and I still use calmoseptine regularly. I still go 8-10 times a day and I regularly take imodium. I used to take VSL 3 but not anymore

I have to get up 2 or 3 times a night to use the bathroom. Sometimes, I have accidents at night. Not regularly. It usually happens when I am really tired and don't wake up, have ate something too late at night, or have eaten something I don't normally eat. My GI doctor has a j-pouch too and we laughed at my last appointment about how neither one of us would ever take a sleeping pill. It's really great to have a doctor that truly understands what the patient is going through.

I eat what I want to eat. I know I might pay for eating somethings later, but sometimes it's worth the tradeoff. Sugar is a trigger for me.

Bottom line: I am way better off with my Jpouch than UC. The few minor inconveniences are nothing in comparison to 30plus trips to the bathroom, accidents, and constant pain.

Good luck with your surgery.
Posted 5/24/2018 3:44 AM (GMT 0)
Good luck with the surgery please let us know how it goes. I am due for mine early August. Everything I read above seems correct. I have heard sugar will make it worst. So I am loading up now lol
Posted 5/24/2018 5:14 AM (GMT 0)
It seems like Jpouches are different for everyone so you will have to take some time to figure yours out, but what I can tell you is that I think the handheld bidet is a good item to have. I got tired to wiping and my butt was raw in the beginning - I do not use it anymore. Creams can help with that too, a good one i've started using recently is ilex. Calmoseptine is a good protective cream too though. I actually had one barrier cream that I got when I had my ostomy that can do the trick too. The problem is keeping the area too moist can cause its own set of issues. I use powder sometimes to dry off, but the main thing is just to make sure you're drying if you're using the bidet and after showers. Too much moisture can allow yeast to flourish. I used to get butt burn ALL the time, but now I only get it when I eat something spicy. Things calm down with time. If you feel frustrated, just remember it gets better. I never had any issues with leaks, nor did I wear any type of pads. I've been lucky that way, but often I do get up to go in the night. It's quick though, like getting up to pee. I don't even turn the lights on. The one problem I had often in the beginning was painful gas, that only lasted a few weeks, and it was probably worse because I was too scared to pass it. Now I go for it, but I have had one or two miscalculations, nothing like UC though, and not often at all. The consistency of things is different so you have to be careful about pushing hard. If it doesn't come out easily, go to the bathroom!
Posted 5/25/2018 6:51 PM (GMT 0)
I had mine on May 14th so I'm not even two weeks out from surgery and I'm completely content. I had one leak but only bc I ate a bagel with cream cheese at midnight for some odd reason and I was knocked out due to being on painkillers from the surgery. I go 3-4 times max during the day and once or twice at night. That is nothing compare to uc(20-30 trips) or my ostomy which I was constantly emptying even when I prob didn't have to. I spend much less time in the bathroom now. It even feels good to have that explosive fart while on the toilet oh how i missed the releasing of gas haha. I am slowly adding greasy foods and carbonated drinks. Today I had a redbull and chicken tenders and fries and so far no problems. Butt burn isn't as bad as I expected I use zinc oxide to help with that. I'm coaching baseball starting next week and was very concerned about being away from a toilet but my ability to hold it in is unbelievable and a God send compared to the uc days. That's my biggest take from this. I'll go 8-10 times if i have to as long as I don't have to be aware of bathrooms at all times and can hold it im fine. I know problems can arise later on and all that stuff but as of right now I am very happy with my new set up! I've read horror stories about ppl who feel it's just like their UC days. See the the issue is I didn't join a forum or reading others experiences until I was so distraught from UC. Ppl who are out enjoying life and content usually don't post on the internet so your gonna see alot more negative stories.
Look up Jake diekman. He's a MLB pitch for the Texas Rangers he was out all last year for the 3 surgeries and was just in pitching against my Yanks throwing 96mph and back where he used to be. He's very vocal about it on social media. He has a very positive outlook on it and it helped me through the process to know there are positive stories. Through his foundation "Gut it out " on social media I have had conversations with so many ppl who are absolutely ecstatic about their J Pouch and Its a great community. I think it's almost like Alcoholics anonymous where the people have survived such a crazy story and are willing to help others thru the process. Especially since most ppl outside of us don't know what it is
Posted 5/25/2018 11:21 PM (GMT 0)
I've had my j-pouch for over a year and a half now, and love it. Initially I used a barrier cream, and had a hand-held bidet, but now I don't use anything beyond normal toilet paper, and it's fine. I eat a normal diet - coffee, alcohol, spicy food. I also eat late at night.

I leaked a little in my first week, but since then I haven't had any problems.

I take psyllium husk twice a day. Without it, I go 8 times a day, I'm less likely to sleep through the night, and my output is less formed. With it, I go 4 times a day, sleep through the night, and my output is quite well formed.

Hope your surgery goes well, and that you're pleased with the outcome.
✚ New Topic ✚ Reply