Recently taken-down friends

Andrina said...

ks1905 said...
I have no clue, that’s an unprovable what-if about pouchitis. I had really bad pancolitis from the beginning. Cyclosporine twice and two 20+ day hospitalizations.

My only what-if is if I had surgery sooner would I have more of the biologicals available to me for pouchitis. I took most of them to fight UC. I got UC before remicade was approved for UC.

Would you consider going back to the stoma if bioligics no longer work?

Antibiotics still work for my pouchitis. Probably better now that I’ve been off of them for the past few years.

Heading to my second follow up in the morning . The pain with my BM have gotten worst in the last few days . The pressure is increasing I haven’t seen blood for a few days which is awesome . I just know this isn’t right .
It’s now legal here for cannabis in Canada 🇨🇦 ( which I am against) unless for medical conditions... I visited a shop that sells if you have a medical card ( which I just found out my sister has for anxiety) not getting into what I think regarding that one . Anyways even know I am against it and literally hate the smell of it and have only tried it once 20 years ago I purchased a vape pen with my sister that has just the CBD in it for pain no high .
It absolutely did 0 for my pain , I ended up taking 4 drags within 45 mins because each one didn’t touch the pain which is the pressure I feel down by my back door which has now radiated towards my vagina . Which makes making love painful.
Hoping my surgeon can figure out what’s going on .. like I said I just know this isn’t normal.

3timechamp you are so better off without a cold women by your side . She sounds exactly like my ex husband , we divorced 8 years ago and fought in court for 4 years . Life is short don’t worry about people like that ... laugh it off that’s what I do now , don’t let them get the best of you.
Thank all of you for this support group . It helps to feel your not alone.

Tailbone pain is a sign of pouchitis.

There are many different kinds of antibiotics that work for pouchitis. Flagyl doesn’t work well for me. Augmentin and Cipro works the best for me. It’s a trial and error thing.

If you’re referring to nausea while drinking and on flagyl, it only effects about half of the people. I was able to drink while on flagyl without issues. It’s a trial and error thing.

Valli, I am sorry you're dealing with this, especially with your trip around the corner. I wish you could have gotten in sooner so you could have been done with the Flagyl before your trip. Dec 4th seems so long. My surgeon does that tiny scope in the office. It takes a few seconds. Did you ask about that? i wonder why a hospital trip is necessary for that? I hope the flagyl helps. I never drank on flagyl, but i know there is a warning on the bottle. I did however drink on bactrim and I was fine. There may have been a warning on there too about nausea. I am prone to nausea too, I am surprised I didn't get ill.

https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/antibiotics-and-alcohol/faq-20057946

songlady said...
valli - I was hoping you'd report back on your doctor visit! I am sorry for the probably pouchitis, but I hope the flagyl does the trick for you!

I think the thing about drinking is trial and error. Go slow and see what happens. I've had a few glasses of wine several times since my reversal, and they loosen up my BMs but otherwise don't affect me.

I made it through the many hours of my nephew's wedding, from ceremony through photo sessions and reception! And there was SO much food at the reception, several courses of appetizers and then the main meal (later than I ever eat!). I was in the bathroom a few extra times but otherwise everything was fine. I was choosy in my eating, avoiding tomatoes, eating only a small amount of spanikopita (lots of onions=gassy) but I was thrilled with how well I survived. I'd had anxiety about how I would do during this event for months - since my takedown was first scheduled! I am so happy it went so smoothly, digestion-wise!

I am going 8-11 times a day, generally, and twice at night unless I eat something challenging. So, things are slowly improving for me. We can do this, Class of 18!

Songlady glad things are improving for you and making it through a all day long wedding is an accomplishment at this stage . Ahd I had a beer last week that didn’t agree with me at all . Will try something lighter next week . Glad you can tolerate the wine at least .

I don’t eat big meals specially at dinner yet like clock work 6 hours later I start pooping and it goes for a few hours from around 11:30 to 4 am then it’s all yellow coming out there is nothing left inside me I would say 5-6 a night on average. . I wish it was 1-2 a night
And you are right we can do this

Valli feel better. Hope Dr/meds get you headed in right direction. 9 weeks for me since surgery. Still using imodium/lomitil every day. Stool still mostly loose(which seems like the norm for all who have had surgery). Going 1-2x during morning/afternoon while eating light breakfast/lunch. More BMs 3-4-5 at night. Can't eat too late. Try to get some sort of empty before I go to sleep. Once I lay down the gas let's me know if I'm empty or not. Sometimes I make one more trip to boysroom to try to empty out. Accident over night has happened. I can deal with that. It's all better then the UC monster that I lived with for 32 years Hope u all are well.

Keith you think 3-4-5 x at night is a lot??? Thats at night before bedtime,not overnight.

3timechamp said...
Keith you think 3-4-5 x at night is a lot??? Thats at night before bedtime,not overnight.

Maybe we are counting differently. From the time that I get up for the day until the time that I go to bed I count as for the day. If I wake up at night then I count as a nighttime bathroom trip.

I never have to wake up at night to use the bathroom.

3TC remember that food usually takes ~12 hours to go through the small bowel for the majority. So the BMs at night are most likely because of the breakfast in the am. Not eating during the day can help you sleep through the night. There will be some food that makes it through right after dinner but it wouldn't be a lot within those few hours.

Bull, I remember that 12 hour figure from somewhere also, but the Mayo Clinic website says:

Digestion time varies between individuals and between men and women. After you eat, it takes about six to eight hours for food to pass through your stomach and small intestine.

I'm sure transit times vary within that. When I had a colon and was brave enough to eat corn, I would sometimes see it in the toilet 12-13 hours later, which seems impossible, given that Mayo also says digestion with a colon averages 53 hours!

Champ: I tend to eat light morning and for lunch also, and the main meal is dinner between 5 and 6 pm. I might have one or two BMs during the morning/afternoon, but it's evening, 9-11:30 pm, that I have a cluster of larger ones. I tend to have 2 more that get me out of bed, but I've been getting up twice a night for years, anyway, to pee . (Because of work schedule I tend to go at the water later afternoon through evening.) My total has been 9 times per 24 hours, for the last week.

I am beginning to feel like this is a bit more predictable! How about you all?

Post Edited (songlady) : 10/30/2018 1:02:39 PM (GMT-6)

valli1234 said...

ks1905 said...
Tailbone pain is a sign of pouchitis.

There are many different kinds of antibiotics that work for pouchitis. Flagyl doesn’t work well for me. Augmentin and Cipro works the best for me. It’s a trial and error thing.

Hi KS1905
I don’t have any tailbone pain I did with my colitis .
For me it’s the pressure in the anal area I can’t deal with and the amount of BM. I hope the flagyl works she said if it doesn’t help within 4 days that I can get off . Reason being I am heading to St Lucia next week and it’s an inclusive resort and I would love to have a pina Colada or two and I can’t with the flagyl .

Are you away? Thinking about you. Hoping you're feeling well and enjoying your trip! Let us know how you're doing & how the trip was when you're back.

Yea I wonder about transit time. I would swear what I'm eating for dinner is a BM by bedtime?? Or could it be 24 hours later that I have BM from dinner the night before???