J-pouch surgery

Congrats on making it through all the surgeries! It can be a little crazy at first and what you are describing sounds all normal. Your body needs some time to adjust to its new plumbing so just take it easy with food for a bit and then slowly add back all your favorite things to eat. If something doesn't agree with you now, wait a month and then try it again. I'm not sure what paste they gave you but I find Calmopseptine is the best for butt burn. Did your surgeon give you the ok to take Imodium? That may help slow the frequency but don't take it without your doctors okay. I used to "hold it" for a bit at first...not a real long time...then go. Now I can hold it for hours if need be. Time and patience are your best friends right now. It gets much better! Good luck!

I agree what you are experiencing sounds normal and you are on the right track. Its definitely a long road and its not easy to make the adjustments by any means but as long as you stay positive throughout and don't get frustrated because you want things to go back to normal right away because that will not happen. Calmoseptine is my paste of choice also. It heals rashes and damaged skin very quickly and its also thick so it last throughout a couple bathroom trips it also gives you a cooling feeling basically putting out the fire. I would just take it easy with all foods at this point. Introduce things one by one without mixing a bunch of things. Also keep a journal how you reacted to it and even how long it took to make it out the other end. Immodium is good to slow the gut and also Lomotil as prescription from your Dr but we are all different and some things work better than others for different people. You are in the experimental stages of your recovery. Like I said no 2 pouches are the same so you will just have to be experimental with your diet. I've had many accidents at night when I first got my takedown and its nothing to be embarrassed about because most of us go through that. I would try and avoid sugars at night. I always have Kit Kats in my house that I love but I realized every time I'd get my night time craving for chocolate and ate Kit Kats I would have to have another pair of briefs ready for the middle of the night. These are things you sometimes have to learn on your own as you go. Unfortunately there is no handbook we get before we go home with guidelines to follow its all a guessing game. I know you might be nervous to eat at times but don't skip meals because I've noticed you are still going to go to the bathroom but most of the time when I've done that it seems like its just acid and that's when I would get the terrible butt burn. Metamucil or Citrucel works good to bulk up your stool also. A tablespoon 3 times a day did the trick for me in the beginning until your pouch starts to function better. Try taking it with half the amount of water it suggests though or it will run right through you. You will have, pain, cramping, gas pains, and discomfort for a little while until your body and mind get used to your new normal. Good Luck and keep your head up.

Sounds normal. No one told me not to try and hold it... I'm almost 4 weeks out and started holding it straight away, mainly to protect my butt. I have a bidet which is AMAZING. I have very little irritation unless I'm out of the house all day and have a few BMs in a row without using the bidet. I am in the minority because I *hate* Calmoseptine. It doesn't feel cooling to me, it feels like a burning sensation. I use regular A&D diaper rash cream instead.

I had one nighttime accident as well as a few incidents of small leakage at night at first, but no problems for the past couple of weeks.

I stayed on soft bland foods for almost two weeks and that helped a lot with the butt burn and discomfort. As soon as I started to expand my diet I started going more, but now that is settling down again. I'm not willing to live with a crazy restrictive diet anymore like I was with UC, and I kind of know that the worst that will happen is I'll be more uncomfortable or have a few more bathroom trips, so I eat as I please. I still avoid stuff that I know will be problematic (ice cream at night, very spicy food, lots of veggies) but I've been to restaurants, had pizza, Thai food, fried things, desserts, etc... Don't be afraid of food!

Welcome to the club!

I agree with Liz about Calmoseptine - it was too harsh for me. Ferguson Formula was perfect, but plain old zinc oxide worked fine, too, as long as I reapplied it after every poop. In the hope department, I haven't needed any of this in years.

They just came out with a Balmex for adults you might want to test that also. You won't know what works best until you try though. Everybody will have their own personal experiences and one thing that they like better than others. Eventually you will be the one giving this advice to others.

Thank you to all who responded to this post!
Still having the butt burn, so thank you all for the advice. I need to try something cause what i was given does not work well at all.3 more days until i can drive, cant wait to go and try out some new paste.I am still finding myself in the bathroom alot wich is fustrating cause i feel like I cant even leave the house. I did call Cleveland Clinic ( my surgeons nurse) about this matter. She advised metamucil cookies or bars or Limotal. While in the hospital I developed an Ileus, not sure from what but for some reason I am afraid of the Limotal. Plus my stool is already formed ( at least that is what its like in the morning, then by afternoon its like pudding again) I guess if it is already formed I dont want it to totally stop from the Limotal. Actually the nurse agreed with me and was very surprised of having formed stool, sorry i know TMI! she reccomended the cookies to try first then if its still runny try maybe half of Limotal. I guess I am ok with that, again trying to avoid the Limotal as much as i can. As far as my accidents, i am getting a little better. My Mom is an R.N. in wooster, ohio and she has been able to get me these pads that are amazing. They are very large and they cover all the nessary areas. Hsa anyone experienced having a UTI, I recieved a phone call from the clinic and I tested positive for it. So I am also on antibiotics for that. I can see why when its so runny I guess it could reach that area too. As far as my diet goes well, its not that good I have no appetite and I do fear being in the bathroom for extended amounts of time. Last night I was literally up all night going and it wasnt alot but I felt it( my nurse told me at this time NOT to hold it until things are more consistant)I am kinda concerned cause from reading some of you were told to at the very beginning, what shall I do? Did you have the test done before your stoma closure surgery where they inserted an enima that was filled with water or saline? Is this what its going to be like? I had no problems holding the water, not even a drop! But it was kinda challenging, right now i feel pressure and thats when i know i have to go. sometimes I do hold it but the nurse told me not too, but i know it needs streched then maybe that would decrease my bathroom visits. I know I have alot to learn and have to be patient but it is hard at times. I am also so bored out of my mind all of the time too, I really wish i could go to work, but my hubby says no, I am not ready. I am having anxiety about all the medical bills too and feel bad that my hubby is doing it all. The last thing is I am just hoping these symtoms dont last forever and I am hoping that for everyone too! thanks again God Bless