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Posted 10/13/2018 2:26 PM (GMT 0)
NSSG it does seem after surgery that the foods that u can tolerate someone else can't. Sort of like What helps a UCer/meds when flaring. Now u seem to not care if your stool is loose. Is that correct?? So r u ever in search of getting your stool more solid or u don't care?? I think most coming out of surgery want to see some formed stool or will try to achieve in that direction?? Would u agree?? So if u don't care about your stool being loose maybe that's y u can eat anything??? Am I quessing correctly?? How r u with butt burn??
Posted 10/13/2018 8:40 PM (GMT 0)
Yeah, I am not going to live my life letting diet control me. I can hold it, and that's most important to me. If it's loose, so be it. Butt burn is a problem only if I eat certain foods, and I will eat them here and there regardless and just use protectant so I can enjoy myself. Why have surgery and then obsess about consistency so much that you can't eat anything... Might as well have UC, dart for the toilet, and eat like a bird if you're going to live like that, but to each their own. I had surgery so I can eat, drink and not worry about accidents.
Posted 10/14/2018 1:08 AM (GMT 0)
NSSG. I rarely in my 32 yrs of having UC worried about foods I ate In 2008 I was in terrible flare then I cared. Now I'm so/so with what will give me D. But I'm a big guy who likes to eat. Things with MSG I'm trying to stay away from now. More pretzels-less chips. Seedless rolls. Do u use imodium/lomitil or anything else???
Posted 10/14/2018 4:12 PM (GMT 0)
Only if things are pure liquid, and I feel like I should take something, but not often at all. Maybe once a month. The idea of taking/needing medication, is so unappealing to me. I have taken it before bed here and there to attempt to skip a night trip, but I don't think it did much. I never had much luck with imodium when I had a colon, that hasn't changed.

I spent the 18 months leading up to surgery not eating anything. I seriously ate less than one meal a day, and I only ate "safe foods", which basically means boring. I would eat low carb, low sugar, no caffeine, no additives, no packaged, no alcohol... I seriously believed everything was connected to the unending flare up.

My surgeon said people have a variety of different "goals" so far as consistency. He said some people go to any extent to attempt to firm it up and others don't worry about it. It's not that I don't care, it's more that I feel like i'd be chasing an impossibility. The colon is where the firming happens and we don't have one. It's never going to be firm. You may get pellets or pieces, but never a log. I accept that. My consistency goes between liquid and pellets. A lot of it depends on the amount of water I drink. The firmest it is, is when I drink alcohol. That dehydrates and causes the stool to be like pellets, but I don't like to feel like I am dehydrated, so I always drink tons of water.
Posted 10/14/2018 7:06 PM (GMT 0)
Yea. I think all people who have had surgery need to read what u wrote. It seems even with me taking imodium/lomitil daily I still have mostly Big D. Once in a while I'll have some formed stool. Do u have to apply ointment to your back door(Valli term )on a daily basis???
Posted 10/14/2018 7:58 PM (GMT 0)
I do apply something before bed most nights - to ward off problems. I had a yeast issue once in the past from using wet wipes/bidet too often - so I only use those when necessary these days and dry throughly. Throughout the day, I will apply a protectant if I ate something very acidic or spicy, & I anticipate a problem.

I usually use either calmoseptine, ilex or this one is good to have on hand: https://www.coloplast.us/baza-antifungal-en-us.aspx I have a lot of these products left over from when I had UC/ostomy. I actually haven't had to purchase much, just using what i have, but i have a ton, it's comical. I use a tiny drop. Sometimes after a shower i will apply a drop at the start of the day smile
Posted 10/14/2018 9:42 PM (GMT 0)
Maybe you could try having a drink or two before your holiday to see how you react. Then, if you do have a problem you will at least be at home.
Posted 10/14/2018 10:00 PM (GMT 0)
not talking about drinking
Posted 10/14/2018 10:04 PM (GMT 0)

3timechamp said...
not talking about drinking

Sorry, my post was for Valli1234 because she was talking about drinking..

Is that okay with you?
Posted 10/14/2018 10:12 PM (GMT 0)
yup
Posted 10/14/2018 11:08 PM (GMT 0)
I do not use any ointment and rarely get butt burn. I do not eat “very” spicy food anymore, hurts on the way out.

I stay away from Imodium, when things dry up too much then it can be difficult for me to empty. Last time I use Imodium I got constipated and was in a lot of pain.
Posted 10/15/2018 1:55 AM (GMT 0)
We are all so different,i use imodium and lomitil every day and everything usually runs out of me.Now theres a family history of constipation which i had and was hopeing i might still have a little after surgery but thats not happening.I eat a very bland diet before and after surgery,i never went for anything Buffalo style or jalapeño .8 weeks Tuesday since #3,will i see signs of more solid stool???? From what I'm seeing here the answer is NO.So be it
Posted 10/15/2018 2:10 AM (GMT 0)
NSSG that is amazing you can eat anything you like was it always like that. I am hoping one day it will become easier and I wont have to pay for foods I love. Its been 5 days now that I have avoided yogurt and I feel a lot better no cramping and just a little gas . I still go to the bathroom on average 15 times a day, yesterday (4:30) dinner I had a bowl of pasta and half a garlic bread bagel and I swear I went to the bathroom from 7pm-12:00am at least 6 times by 12 I had nothing left in me.

SL I leave Oct 31 for St Lucia, I just worry because this will be the first time I am traveling without medical insurance I have tried several companies and no not a one will give me insurance. Apparently I have had too many hospital stays and ER trips in the last year. Never mind the 3 surgeries its the ER trips that have canceled any chance of getting insurance this time. That is why I dont want to take any chances with drinking, thinking I will just enjoy 1-2 tops a day.
Posted 10/15/2018 2:11 AM (GMT 0)
I would think you can't expect output to be any more formed than it was with your end ileo, maybe even a little less formed. The end ileo preserves the most of your GI tract. I would say my output with my pouch is probably about the same as my end, and that varied between liquid and sort of drier pellets. I guess it's individual. I looked on jpouch.org and it sounded like what I describe is the norm for the large majority. Sometimes I have sort of snakes smile That's pretty formed i guess. I don't mind liquidy, the worst is when you need to use a lot of paper to clean. In those instances, I use a wet wipe. Sometimes I carry a couple of those individually packed "dude wipes" in case I am out and I need something better than tp. Liquid is actually quick, you just wipe and run.
Posted 10/15/2018 2:20 AM (GMT 0)

valli1234 said...
NSSG that is amazing you can eat anything you like was it always like that. I am hoping one day it will become easier and I wont have to pay for foods I love. Its been 5 days now that I have avoided yogurt and I feel a lot better no cramping and just a little gas . I still go to the bathroom on average 15 times a day, yesterday (4:30) dinner I had a bowl of pasta and half a garlic bread bagel and I swear I went to the bathroom from 7pm-12:00am at least 6 times by 12 I had nothing left in me.

SL I leave Oct 31 for St Lucia, I just worry because this will be the first time I am traveling without medical insurance I have tried several companies and no not a one will give me insurance. Apparently I have had too many hospital stays and ER trips in the last year. Never mind the 3 surgeries its the ER trips that have canceled any chance of getting insurance this time. That is why I dont want to take any chances with drinking, thinking I will just enjoy 1-2 tops a day.

I ate what I wanted pretty shortly after surgery. For me, it was more about eating less quantity at once, than eating certain foods. I also like to eat dinner a little earlier when I can. I am nearly 3 years post at this point, so it's hard to remember. I don't really have terrible gas or cramps from anything in specific. I actually rarely have gas, and when I do it's nearly odorless. No getting back at anyone... Your trip sounds amazing. 1-2 a day is definitely enough. I usually can't have more than that or I get a headache. You're going to have an incredible time. I wish you could get in to see your surgeon so you can get confirmation that everything is okay, though I am sure it is, and you just need to be patient. 15x is headed in the right direction, i am sure you will be down to 10 before you know it, and then even less. It's hard to be patient when you have a big trip in a few weeks...
Posted 10/15/2018 2:22 AM (GMT 0)
Poppie that is a good idea about trying out a drink or two... too late tonight I will try one tomorrow evening.

Question...with the new update of this forum can you re-read comments when you are replying.
Posted 10/15/2018 2:32 AM (GMT 0)
NSSG I agree about eating dinner early on in the evening, and hopeful I will be down on my BM trips soon enough.
Posted 10/15/2018 2:51 AM (GMT 0)
NSSG-Valli eating dinner early is something I'm trying to do as often as posible.I don't want any urges to go once I'm ready for bed.Im a heavy sleeper and have had accident a few times in last few weeks during night.Its all a learning experience and better then my life this time last year
Posted 10/15/2018 2:55 AM (GMT 0)

ks1905 said...

I am currently taking Stelara for my pouchitis. It works really well for me.


So you went through all the surgeries just to end up on a biologic anyway?

3timechamp said...
NSSG-Valli eating dinner early is something I'm trying to do as often as posible.I don't want any urges to go once I'm ready for bed.Im a heavy sleeper and have had accident a few times in last few weeks during night.Its all a learning experience and better then my life this time last year


I'm afraid of incontinence at night because that's what I'm dealing with right now. I haven't had my surgery yet but I will have the first step in November.
Posted 10/15/2018 11:53 AM (GMT 0)
Andrina the difference between now and before surgery is u r in control of things much more as far as the quality of your day. Lots and lots of anxiety before any surgery. That anxiety has been lifted. I ate a light dinner last night. Got emptyiish before I went to bed and no accidents while sleeping. Life is good
Posted 10/15/2018 2:42 PM (GMT 0)
The sleeping thing is probably tough for a lot of deeper sleepers. I think one way around it would be to set an alarm and get up at a certain time, let's just say 1am & 4am at first, then change it based on result...

I personally do not sleep well at all, ever, and I never have. I get up frequently, I am not tired often, and I wake up if the wind blows the wrong way... I've never had any type of accident in my sleep. I don't take sleep aids though because I worry it would put me in a deep sleep that I might not wake up from if I had to go. You will however get the urge in your sleep - it won't just come out. The problem is that when you're sleeping, it can seem like a dream.
Posted 10/15/2018 3:00 PM (GMT 0)

Andrina said...

ks1905 said...

I am currently taking Stelara for my pouchitis. It works really well for me.


So you went through all the surgeries just to end up on a biologic anyway?

Yes, I knew the risks (about 7-10% of us end up with CD or Chronic Pouchitis) prior to having surgery. Living with pouchitis is completely different than when I was living with UC flares. Pouchitis responds rapidly to treatment and doesn't affect my life at all.

I chose a biological because I did not want to continue to take antibiotics. Antibiotics are very effective on pouchitis.

I don't have any regrets about my surgeries other than waiting for so many years to have it. I needed my hip replaced because of long term steroid use to treat UC.
Posted 10/15/2018 3:28 PM (GMT 0)

Andrina said...

ks1905 said...


3timechamp said...
NSSG-Valli eating dinner early is something I'm trying to do as often as posible.I don't want any urges to go once I'm ready for bed.Im a heavy sleeper and have had accident a few times in last few weeks during night.Its all a learning experience and better then my life this time last year


I'm afraid of incontinence at night because that's what I'm dealing with right now. I haven't had my surgery yet but I will have the first step in November.

There are medications that you can take before bed to help with night incontinence like imodium, Lomotil, or tincture of opium.

I don't take any of the bowl slowing agents, I go 3-5 times a day and I NEVER have to wake up at night to empty my pouch. I usually go about 12 hours form the time I empty my pouch prior to bed and when I first empty it in the morning. Sometimes I only empty my pouch once a day.

I take Stelara for chronic pouchitis. I only wish that I had surgery sooner.
Posted 10/15/2018 3:29 PM (GMT 0)

ks1905 said...

Andrina said...

ks1905 said...

I am currently taking Stelara for my pouchitis. It works really well for me.


So you went through all the surgeries just to end up on a biologic anyway?

Yes, I knew the risks (about 7-10% of us end up with CD or Chronic Pouchitis) prior to having surgery. Living with pouchitis is completely different than when I was living with UC flares. Pouchitis responds rapidly to treatment and doesn't affect my life at all.

I chose a biological because I did not want to continue to take antibiotics. Antibiotics are very effective on pouchitis.

I don't have any regrets about my surgeries other than waiting for so many years to have it. I needed my hip replaced because of long term steroid use to treat UC.

There is a person on the ostomy board with CP who is on stelara, and tried antibiotics I think, and she's not having luck getting it controlled. It's nice to think, and hope, that if it happens to us, we will fall into the % that it's "easily manageable" but we have to be realistic, some people do lose their pouches over it. I hate to be negative, but i don't want to paint a false picture about the seriousness behind the decision to have surgery.

Keith, did you have uppers before surgery and they were always clear? How long after take-down did the symptoms appear? I have read that CP is more common in men, but i don't know if it's true.
https://www.ncbi.nlm.nih.gov/pubmed/26446071
Posted 10/15/2018 4:00 PM (GMT 0)
I never had any uppers done. Everyone was very certain that I had UC. The surgeon who did my pouch is a world famous crohns surgeon who has a crohns surgical procedure named after him. He was very certain that it was UC.

The biopsy after my colon was removed said it was UC. Now I have ulcers in my pouch and above my pouch.

Most of the people who I have seen on this forum that had their pouches removed was due to construction issues.

There are always exceptions to everything in medicine. "Most" of the people with chronic pouchitis respond really well to medications. We've seen people on the ostomy forum who end up being allergic to ostomy supplies. There are always risks and you could be trading in one problem for another. I understood my choices and risks so I have no regrets.
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