New J poucher! Advice and reassurance

Samantha, congrats on taking the first steps into your new world! :-) Overall, remember that patience truly is a virtue (just as your mother probably always told you); especially when it comes to adjusting to your new plumbing.

As for the nauseousness, that could be left over from the surgery. I wouldn't worry about it too much unless it lingers, in which case you should followup with your doctor.

In terms of emptying your pouch, I always know mine is empty when I get that 'woosh' of gas at the end. It can be loud, but I know the pouch is empty...lol. In terms of getting to that point, I'll wiggle around on the pot and rub my abdomen until I get that woosh (I've heard it referenced in here as "toilet gymnastics"...also an lol). As for the "double dip" of going and then feeling like you have to go again 15 mins later, for me that was part of the initial adjusment period (especially right after I ate), but it faded and gradually went away over several months.

The "bullet wound" took several weeks to heal/close up. I remember having to periodically clean and re-pack it with gauze.

As for introducing new foods, you can probably start now. But do take it slow and easy. Introduce one thing at a time (so you can guage your body's response), remember to chew it well, and see what happens. If all goes well, pat yourself on the back and move on to something else. If it doesn't agree with you, back off for now but try again later (especially if it's something you really like); what disagrees with you now might not necessarily disagree with you in the future once your body has adjusted.

Finally, in the "for what is's worth" department, I vividly recall that feeling of waiting for the other shoe to drop. I think it's a natural response to all of the stress (mental & physical) we go through when fighting UC. Please know that it too will fade over time.

Prayers & Best Wishes,
Steve

Congrats on the takedown! I would stay with soft low fiber foods, lots of water. I loved yogurt, applesauce, meal replacement drinks. Take your time. Nothing raw for a little while longer.

I think we all run into the problem of not quite getting the pouch completely empty and going right back. I always try to lean a little forward to help with gas too. My stoma opening drained for a long time, weeks I think. The nausea does go away too. No straining either. Best of luck.

Congratulations on entering into your new phase of life!! I'm so glad you asked all those questions because my daughter, who had the first surgery on June 18th is as of this moment doing the takedown around August 6th. I am personally petrified of the change and getting used to the bathroom stuff, but so glad you asked questions. We will have lots of questions but one in particular had to do with the stoma and I do know my daughter thinks it will just be closed and no big deal, i'm glad to know ahead of time that's not how it goes. My other question is not just about food, but a general list of products to have on hand would be awesome - I have seen butt paste listed everywhere and immodium. Any other items I should get now to have on hand? Thanks everyone

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Were you very nauseous every time you needed to empty, does this ease up?

With my J Pouch, the only time I ever felt nauseous is when I became dehydrated, which has happened quite a bit with it. Otherwise, nausea just doesn't occur anymore in my case. After all these years I have never vomited once. I'm really worried now that it will lead to serious illness if I ever do.

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How do you recognize when you have fully emptied?

To me it's the same as before I had my pouch. At least before I had my pouch that meant not returning for another BM for a day. Since my pouch is now the equivalent of a small gas tank, I realize there's no defeating it. Even when I starve myself, I'm still returning to the bathroom. In those cases it might just be gas. But the problem is, it's not easy to differentiate between gas and bowel movements anymore. That's 1 of the many reasons I consider my pouch to be nothing but a bad compromise.

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Last, when did you start reintroducing foods back into your life? I'm on the soft GI low residue diet right now. What foods are best to start with? What can you eat now? What foods cause pouchitis or aggravate pouches?

Most of what you'll find on the J Pouch diet here is what you want to stick with. dietary guidelines

i had my takedown on 7/3 and have been coping well, glad to hear you are also. I know the nausea feeling your referring too and I was completely freaked when it happened but it has stopped since yesterday so here is hoping it doesn't come back lol

I havent had any issues with food and while I am taking it slow I am not limiting myself. I did today though have a protien shake for breakfast as I was just tired of running to the bathroom. For some reason my body knows the difference between when I eat food and drink and I swear Im not even done with a meal before I am running to the bathroom.

How are you coping with butt burn? Mine is starting to calm down but I think it is more related to stretching everything rather then the acid, however some-days its both lol

and yea this shotgun size wound I have is horrible. it doesnt ooze but just plan looks horrible lol I keep it covered, they said I didnt need to pack it anymore. I wish I understood why they just didnt stich my back shut though I would have preferred that although this small hole is better then another huge midline I guess.

and I havent really passed gas yet. Sometimes I feel it in there and sometimes I feel nothing. i have come to cope with the fact i may not fart again lol but if I could get a good burp it might help (sorry for TMI but it is what it is lol)

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How are you coping with butt burn?

I've always used zinc oxide cream or paste. As long as I got it, I never have butt burn problems. It's also not going to take you to the bank.

Thank you all. It is so reassuring to know others are going through/ have been through the same things!

Bethie- I have found Boudreaux's butt paste phenomenal. I bought the Cottonelle flushable wipes but haven't really used them. I feel cleaner and drier with good old Quilted Northern. I also bought Depends but never truly needed them, they were more uncomfortable and I switched to underwear after a few days after the fear of an accident went away. I hope your daughters surgery went well! As far as food post op I've loved the effects of Cheerios and bananas!

I am almost 3 months post op from takedown. I am basically eating what I want except for a couple of no no's like ,nuts, seeds, skins , popcorn, raw celey, raw carrots and anything too spicy. Otherwise I am tolerating food well. I seem to have way more bm's when at work. Not sure if it is the stress of knowing I am not home with my bidet or not but I am looking into getting one for the girls bathroom at work. i have one at home and it works wonders for the BB which I only seem to get with numerous trips to the bathroom. Good luck all your new "take downers" , this site was such a help to me without it I would have been lost.

I've had my pouch for 12 and 1/2 yrs and the first year is the worst. Wiping is the hard part so if you can get a spray bottle of sorts or a bidet, that is the key to getting a clean bottom and not so much butt burn. Our poop is softer and harder to clean (specially if your not taking any psyliumm). So spraying and not all toilet paper will really help butt burn unless you eat something that makes it burn and then thats just for a couple 3 bowel movements. I eat everything in sight that I like and most of the time I can't tell I have a pouch. No meds for me just tsp.psylium in cereal in the morning and in my yogurt in the eve.You will improve but it does take a little time.

Dgloria5- what is psyllium? Also does anyone use Align? I was told that prevents pouchitis?

Psyllium husk is what is put in the metamucel wafers, it is ground down to a powder and you can get it at a health food store very inexpensive. If you use it just use about a half of teasp to begin with, sprinkle on your cereal or yogurt 2 times a day, it helps to slow and keep the poop together most of the time. Never heard of Align. Probiotics is what helps to prevent pouchitis and yogurt has the friendly bacteria (live cultures) in it. I've never had pouchitis and I've eaten it from the start ,every day.

I did already buy the butt paste, although my kids surgery is not for a few weeks. She looked at me like I was crazy for buying...it was on sale and I figure let me have it on hand for the second she needs it. I am interested in how everyone got their stoma opening taken care of - I have read that some got it stitched and some have had it open with packing - is there a norm to this - her stoma is to the left of her belly button and I am sure she has no clue the process for this.

Bethie - It really is up to the surgeon. Some believe to close it and others keep it open because of risk of infection. Mine was left open (no packing) and it closed on its own but it did take a few weeks. They pulled the wick out of the stome before I left the hospital. Some patients do go home with packing and the Visiting Nurse would take care of it and make sure the stoma site is healing correctly.

Roberta
Takedown 4/30

I agree will all the above. Nausea normal. I too know I'm empty when I pass gas. You will have a new normal now with that. I'm 8 yrs. out and I never have a feeling of being "finished". No straining. Do the food introduction very slowly. Too many sweets aggravates my pouchitis. Speaking of pouchitis. My surgeon tried all kinds of antibiotics for me and nothing worked. I finally went back to my GI dr. and we started trying things that worked (at least for a while)when I had colitis. I now take one rowasa enema at night and that's it. No pouchitis for 2 years. It took 1 or 2 years to figure this out. The first year IS the worst but it can take even longer to figure out what works and what doesn't for you. good luck

Bethie- my surgeon preferred to leave mine open. He said that it's the chosen method, given that closing it could result in an it pocket and infection. So I just pack it with a bit of gauze 2x a day and cover it with s gauze square and metaphors tape. It's really easy and they showed me how to do it in the hospital. The "bullet hole" started about as deep as my 2nd knuckle on my pinky and about as wide as my pinky too. after 12 days it's much shallower and I can see the bottom of the hole now.

It took some getting used to and I had to top freaking out that I have a hole in my side, but after I sat with it and looked at it awhile I brought myself around. No worse than seeing the ostomy for the first time.

My surgeon did mention there are 2 different approaches to takedown, some just put the ostomy back in and close it up. Some do a bowel resection and remove the part of the intestines that were the ostomy. He said University of Michigan has him do the resection simply because they bill insurance more for it and it's the more studied method. Because of the resection I had some additional swelling and tenderness. So have your daughter be prepared for either way. Almost 2 weeks out nd I'm finding this recovery is 1 million times easier than the 1st 2 surgeries. After I got over the initial hump and freak out its not that bad!

My surgeon stitched my ostomy site closed and is a far better seamstress (male version) than I ever was! No problem with infection. I like Steve's suggestion regarding the introduction of new foods. Worked for me. I was told to stay on the low residue diet for 6 weeks but I didn't make it. I think I lasted tree or four before beginning to reintroduce foods I preferred. What may not work one week might well be fine the next week so keep trying! Eventually, you should be able to eat everything! I am. It took a about 6 months post takedown until I felt brave enough to do so. Sounds like you are doing wonderfully! Conrats!

My surgeon stapled my ostomy closed... It has been about a week and it is healing nicely so far. Still a little bit of blood drains when I get to active but there is no infection and hardly any pain anymore. I clean the area with antibacterial soap when I shower just to make sure I don't get an infection. I have been using Huggies wipes when I use the restroom and haven't had any problems with butt burn yet. I started out only having 2-3 BMs a day but the past couple of days it has moved up to about 4-5. I'm sure this has been the result of me eating and drinking a lot. I don't use anything to slow output such as Imodium or fiber wafers. I do take VSL 3 probiotic every day though just to keep things friendly in my pouch as I have heard others suggest. I feel great and if it weren't for the 10lb rule I would all ready be back at work!