DG, just a suggestion if too little comes out (which seems to be your main problem now, right ?) : use a catheter to empty the pouch. Have been doing it for the last 6 months and it's made my life (and sleep) so much better, it's unbelievable !
Look for the thread "irrigation tube anyone" for details.
Good luck !
Arnaud
**Update**
Today has been an interesting day. Had a doctor appointment and got my new mechanical keyboard in (types amazing and lights up). I told my doctor whats been going on and she seems to think a stricture higher up. not sure where but i kept telling her more info about what happens when i go to the bathroom and she seems confident its a stricture. Going in on Monday for sedation and dilation. Fingers crossed it fixes the issue.
Raven - the pills stopped after the 5th..pretty odd they were in me for so long but maybe they just kept floating above the stricture till the right moment they could come out??
Arnaud - IDK about this catheter idea, sure maybe as a last resort but i want my pouch to function as intended, then if it just seems to be ever failing and i can fall back on catheter before having to relent to an ostomy again i might consider that. thank you for the info though, i have been reading it.
**Update**
just need to get through today and i will be going in for the dilation tomorrow morning. i made another thread called "explanation for this?" basically detailing whats going on with this "stricture" and my doubts to it being a stricture, but i relayed all of that to my surgeon who still seemed to think stricture. i guess im just trying to ease my nerves about being able to have some relief tomorrow. even if i have to go back for multiple dilations at least i know its a step in the right direction right? and that there is light at the end of the tunnel.
Strange, are you sure this is butt burn? I thought the burn is only supposed to be outside of the anal canal. Perhaps you have cuffitis?
Yes most definately butt burn.
I experienced such issues initially just after surgery whilst still in hospital; at that time I had no idea what was occurring, I believed I had a blockage.
Then such issues occured again roughly 10 days later when at home; very painful and so uncomfortable.
I've believe the itching I also experience is caused by the same reason.
My Surgeon explained that there's an area all around the anus where the two skin types meet.
Without becoming too graphic: should I wipe, using a wet wipe without slight insertion, later on through out the day I'll experience an intense itching but with a slight insertion of the anus, until no trace of output is present on a wet wipe and all is well; in fact, I don't need to use the ilex protectant paste as often now.
Should I attempt to ignore the itching sensation, it will eventually become very uncomfortable and will result in an excruciating burning sensation during the BMs.
I currently have 4 to 6, maybe 7 BM's during a 24 hour period, without urgency and there can be 3 to 4 hours between each BM.
Pouchitis, is the inflammation of the pouch and BMs increase drastically and so does the urgency.
A symptom of Cuffitis is bleeding, which I've never had.
I'm doing well and loving life without the colostomy bag stuck to my side, although, whilst sleeping, I keep forgetting it's no longer there.
good to hear you are doing well Strange
I'm having my reversal later today.
how long did it take for things to settle?
DG, the waiting, issues with the IV tubes and excessive toilet visits all can be very frustrating but hang in there, at least now you're in the hands of the professionals.H
Hopeall goes well for you today.
Shainy, I had good mobility, no pain or discomfort; for first 10 days was visiting the toilet 8, 9, 10 times per day, without urgency, only issue was the butt burn and by end of month, more or less back to normal, BMs down to 4 to 6 per day.
**update**
Its 2 days after the dilation and i can now feel my rectum more. was starting to worry me for awhile. My father recorded the surgeons conversation after dilation and she said she had used some new type of local anesthetic that would take several days to fully wear off so it was a relief knowing nothing was wrong.
I seem to be going to the bathroom better. i def slept better the first night home after dilation then last night was just a difficult night trying to fall asleep. hopefully tonight will be easy enough, perhaps a benadryl is in order. Battling Gas the past two days also. hoping i can get that in check today. i could tell last night that my system was moving fast because my stools were pretty green and i think that signifies fast movement? was and is still like that, last time i went anyway.
powerful to you and everything will be fine again, wish you good luck....
I pray for you for your health and always check up body and be careful by accidents in future and always be happy .
Thanks everyone for the well wishes!
**update**
Felt like today deserves an update. the past two nights my sleep has improved a bit. hoping not to have jinxed it by acknowledging it. I went on a decent walk yesterday through my neighborhood, mostly because finally it was like 30 degree out but a nice and cool 65. i noticed a difference later in the day that i will probably attribute to actually walking, i went a bit longer without going to the bathroom and when i did go it was noticably easier/different in a good way. i believe a walk everyday is now in my future.
dgtracy, Thanks for the updates. I'll be having my second takedown later this year and haven't found to many people that post about a second time around so I find your posts encouraging and helpful. It sounds like things are coming together nicely for you, awesome!!
What bidet model do you have and would you recommend it? I will definitely be getting one this time 
Strange, In an earlier post you mentioned you didn't know if a second jpouch could be made. I'm having a new 2nd jpouch made in 2 weeks and 2 days, woo hoo! So it can happen, thank goodness.
Anyone else have a second jpouch constructed? This will be my 8th surgery in the past two years and I'm still really scared.
Nicki my bidet is the add-on model call Neo 320, it was around 60.00 and the reason i chose it was because it has two water lines, one for hot and one for cold. when using the hot water (it has an adjustable valve to get the temp just right) it has the feature called pre-wash, which is where it wont shoot the water up at your bottom till your ready, that way you can turn it on till the water starts to come out hot if your bathroom happens to be all the way across the house from the water heater. i had an older model that was just cold water but getting a shot of cold water on the butt at 3am in the morning will wake you up for sure! and with having sleep issues with this whole thing already certainly dont need that, i highly recommend the neo 320, i purchased off amazon.
Thanks, dgtracy. That is going in my amazon wishlist now.
Strange, Kinda of, I guess. There's a huge anastomotic leak. The hole leads back into the pre-sacral space where I think they are filming the next alien movie. If I understand correctly, my pouch is okay other than that, which might still sound awful but I consider myself very lucky. I still have it (disconnected), but since I've already had a handful of unsuccessful attempts at fixing it I guess it may not be salvageable and they'll whip-up a new one. I'm pretty sure that's why they put my ileostomy higher than usual, but my memory is a little foggy from that day
Crazy, right? It never stops amazing me what "they" are able to do.
Thanks Nicki for the thourough explanation, gives me more of an understanding.
I've only just had my reversal and all appears to be going well, especially when compared to some on this forum, it appears too good to be true, so wondering what available should my new J pouch fail.
omg, I totally do that too! But honestly, my complication is pretty rare and I think many many people have no issues/complications. I hope you aren't freaking yourself out and spend more time healing and focusing on how amazing your new life will be. Although, it is comforting to know complications don't mean you don't have options.
I'm excited just imagining how you must feel. Cheers to your reversal!
Thanks Nicki, no I'm not freaking out, worrying over nothing.
All's going well, 4 to 5 BMs within 24 hours, sometimes 6.
Upto 3 or 4 hours between BMs, completely recovered from Surgery, mobility back to normal and my old Stoma site has healed too.
I experienced butt burn to start with but all good now, sleeping through most nights, although some leakage on occasions.
After so long with the Colostomy bag, it takes some getting use to, but loving it.
Seems fairly normal, but I'd avoid all sugar alcohols, not just sorbitol (http://en.m.wikipedia.org/wiki/Sugar_alcohol ). They all can cause bloating, gas and diarrhea. Read labels. As time goes on you may become more tolerant. Even Velveeta may be a problem because it is so processed with added milk proteins.
And when you start the Metamucil, go slow. I got gas and bloating with it, so it was not useful for me. It may be great for you, though. Just increase it slowly.
Jan
Yeah, seems like regular adaptation, but since you don't have a new pouch, it probably will be different. Still, you had some surgery there, take-down, and a dilation, so things need to adjust all over again.
Jan
**update**
been awhile since i provided an update. The source of alot of my gas from above ended up being Metamucil. although it did great bulking up my stool, one day i switched from it to fibercon and my back to back bathroom visits in the evening lessened a great deal.
for a couple of weeks after getting dilated i was going really well, now things seem like the stricture is developing again. i wonder how fast a stricture can come back. i will put a call into my surgeon just to be on the safe side, perhaps shell order a scan or go ahead and schedule a dilation. having looser stools, no fiber pills are helping. my bathroom visits are in an acceptable range but fluctuates, one day could be 6-10 and the next could be 13ish. i do have to do a small bit of pushing and more comes out when i do. I'm emailing my surgeon now.
I lose insurance on 4/26 through my parents as im turning 26. i have a few plans i looked at on the marketplace to take its place. going to miss my dual insurance!
**Update**
Just had my Dilation yesterday under sedation like i normally do. my pain from it normally happens while i am still in the hospital but this time it happened after i had gotten home and napped for 2 hours. the pain was aweful and their oxycodone did not touch the pain. i called the nurses line to put a message through to my surgeon, got a call back about 30 minutes to 45 later from a regular nurse. conversation went as follows.
Nurse: hey mr. Tracy this is judith, whats going on
ME: the pain from my dilation seems to have just started and is aweful the pain meds she has prescribed have not touched it.
Nurse: oh gosh im sorry, idk what to tell you. maybe take some Ibuprofen?
ME: I'm not supposed to take Nsaids mam, have you even spoken to my surgeon?
Nurse: No..do you think three oxycodones would help?\
ME: please speak to my surgeon or her aid Karen..
Nurse: okay, give me a few minutes..
the nerve....how can you be a nurse and tell someone "I dont know what to tell you" boy i was infurated. she did end up calling back and karen my surgeons aid had prescribed valium which took the pain away after about 20 min. i napped on and off rest of the day too.
now its just a matter of giving things a couple of days for stool and all to get back to where it was after the last dilation which if i recall took a couple of days.
Hey Dg,
Thank you for the in-depth updates. You and i seem to be on a similar path. I to, hope to go for my second take down in about 5 days. My pre-ops are this Thursday. The leak test is my biggest one as i suffered a perforation almost 1 1/2 years ago. After multiple repair attempts, the last one looks to have held. We will find out shortly.
My concern has been the second take down as well. My pouch, prior to the perforation, was wonderful. It has been inactive for a bit now. So i am concerned as to how it is going to react to being used again.
I will update you as well.
Good luck to you.
Derek
my reacted so well the second time, the leak test i absolutely hated. Not just because of them sticking a tube up your butt, but because it was a teaching hospital (MUSC) and they had about 5 people in the room. i could only make jokes to keep everyone laughing to avoid my embarrassment. i will continue to provide updates. its also important to me so i can look back on things and say "yep, this happened, i did this, things got better"
my reacted so well the second time, the leak test i absolutely hated. Not just because of them sticking a tube up your butt, but because it was a teaching hospital (MUSC) and they had about 5 people in the room. i could only make jokes to keep everyone laughing to avoid my embarrassment. i will continue to provide updates. its also important to me so i can look back on things and say "yep, this happened, i did this, things got better"
I know how you feel about that test. I have also had multiple people in there and i do the same thing, laugh. There is nothing else i can do about it.
And the 'tiny' tip they use, feels like a baseball bat to me
Oh well, almost time to do this. At this time tomorrow, all the tests will be done.
Talk soon.
Hey I recall that teaching hospital stuff. I had mine done in Mount Sinai in New York City, also a teaching hospital. Every day there were groups of students, a new one pulling out my abdominal drains every day (this was back in 1992 when they did not do colectomies laparoscopically).
Funny story: the day my urinary catheter came out only one medical student came in my room. A female- a very young, very beautiful Asian American lady. She very cautiously and politely asked me if I had any objections to her removing my urinary catheter (the way it was put to me suggested that she would get a guy to do it instead if I was embarrassed). I told her the only objection I had was if this was her first urinary catheter removal from a guy. She said, "oh no, I have done hundreds." So I said to her, "go for it." It came out pretty quick, burned for a second. Having had the experience of a Q-tip inserted into my urethra in a corkscrewing motion to grab a culture for a suspected UTI some years ago, I can tell you it hurts a LOT more having something inserted into the urethra of a penis, than having something yanked out of it.
Dt and DG, good luck with your upcoming procedures. I pray all goes easy for both of you.
Dianne
have you tried or heard of the low fodmap diet. I was having tons of gas, going a lot, and a lot of anal pain, I think the gas pressure and increased stools from the gas aggravates fissures or hemroids or something - any way my new GI said to try it. I noticed a difference right away. Its hard to stick to but not that hard. Get sourdough bread, I found this great one, Tuscan, at trader joes, get lactose free yogurt, theres a really good one at whole foods, stop eating apples, eat cheddar cheese istead of others like American, no high fructose any thing, and no onions or garlic - that's the hard one cuz its in salad dressing and all tomato sauce. Had to stop all regular pasta. Just try it for a few days. Im eating lactose free icecream - its great. I cheat on it and I think I can tell when I go to crazy with chocolate. check out the whole list of allowed and not allowed on line, but potatoe and rice are fine. It is not close to SCD difficulty that im sure we all tried before surgery.
Dt and DG, good luck with your upcoming procedures. I pray all goes easy for both of you.
Dianne
Thank you Dianne.
Got good news for the first time in almost 2 years today. Take down is Monday.
**Update** looks like its been awhile since i was able to provide and update. things are still good! after the last dilation it took a couple of days to get to a stable area with good bathroom trips but once i got there i have had this massive surge of energy and "Go do it" attitude. i have been outside shoveling up all this white rock on the side of my house at least 4 yards worth, re-did all the red mulch around the house, Sanding & painting our interior doors, and now im going home every day with the intent to work on getting some old lawn equipment back in working order which is also going very well. i pray this all continues!
DTmack - how was takedown?
**update**
Hello all, i figured it was time for an update...this long post providing update has certainly helped myself and i hope it helps others. i couldnt remember the last time i had a dilation so it was easy to come in here and look it up. i wish i had described what it felt like leading up to needing a dilation. i think i may need another one again. its not terrible right now just seem to be having a problem getting things to firm up. perhaps thats a post on its own... right now Bm are fluctuating rapidly between sometimes formed and sometimes more liquid and free flowing. the latter is the majority of the time. Gas seems to have taken on a stronger not so pleasant smell which im thinking if i have a stricture forming then some of the stool that is getting left behind above the stricture is getting to stay longer to incubate bacteria hence a stronger more pungent smell. still passing gas on the toilet...which the last time i needed a dilation i vaguely remember only being able to pass gas while lying down on my stomach or side.
On the plus side of things IM SLEEPING THROUGH THE NIGHT!! some nights i get up same time around 4:30 or 4:45 but i do get the long stints of sleep. i attribute that to marijauna. at first before bed i was taking pepto, MJ, and a lomotil. sometimes i would throw in an oxycodone if i was having leg pain or back pain (enteropathic arteritis) but i try to stay away from doing that alot. i started having the brown semen issue so i cut out pepto as Jan said that could be causing some bleeding in prostate, which left just lomotil, MJ and occasional oxy. slowly cut out the rest and now just a 30 second smoke session for bed and i get a wonderous nights sleep.
as another update my insurance that i have through my parents, dual insurances expires after i turn 26 which...SURPRISE...I turn 26 on April 26, 4 days to go. i already have something in place but nothing from here on out will be as good as having two insurances. if i think i need a dilation now would be a good time to schedule it with my surgeon who almost always fits me in the following day at like 5:30am Thoughts?
