I have had my pouch for 5.5 years, albeit  with  issues. On a good day,  without meds,  I usually go 6 times and two to three times during night. When pouchitis  is flaring I may be in the bathroom every hour.  I cannot recommend any jobs at this time as I would be unable to maintain a professional job with my pouch issues. 

I do find lomotil does give me a longer period of time before having to empty the pouch (4/6 hours sometimes). Imodium only seems to constipate me which is not good for me as I have a stricture.  I have a script for hysocymine but have never taken it.

If you have active pouchitis, antibiotics can  help get it under control and lessen your bathroom trips. 

Thanks so much, Jeane! I REALLY appreciate the input!!!

Jen B

Jen ask for the lomotil by prescription. It may really help slow things down. Good luck. 

With a well-functioning pouch 4-6 BMs daily (with no urgency) is typical. I'm in that range, though (to be fair) I'm also on antibiotics continuously. 

I am a teacher too. If I don't have a flair up of pouchitis I go 5-7 times a day. I am lucky because I teach elementary art and have a few minutes between seeing a class if I have to go. Too much Imodium or lomotil backs me up so I only take 1, maybe 2 if I feel bad, a day.

Thanks y'all,

Jeane- I have tried the lomotil and unfortunately I get terrible side cramps and pain, so for me it is a NO-NO. And I am on an antibiotic, which does make it better.

Dunninator- Thanks for the input about teaching. I would love to be able to continue to work in my profession. Reading your reply gives my hope.

Scott- Thanks for your input.

Jen

Anybody else: Would LOVE additional input on these topics!

I have about 10 a day BMs with a j-pouch, on probiotics, on an antibiotic, on Symax 2xs a day. Have (almost healed) pouchitis. So crazy- very inconsistent...will have one day with only 5 BMs and then the next day 12. ??? 

Anybody else have this issue of inconsistency? I eat pretty much the same thing every day.

Hi Jen,

Sounds just like me, 10 BMs on a good day, slowed down with Cipro but then this becomes non effective after 2/3 weeks, Immodium slows too much, Metamucil is OK, Codeine great for a few days but everything I take seems so up & down. I'm very frustrated & then by chance while not taking anything I improved to 4-6 BMs a day & realised I'd not eaten any dairy, I've continued this path for 11 days now & all is still good. I'm so happy that this maybe the culprit which I can easily manage. I try to follow a low FODMAP diet too & experiment to see what is a trigger, so far I see garlic, onions & apple as my baddies. Worth a try & I hope you have a result.

Good luck

Paul

Thanks for the input, Paul! Nice to know I'm not the only one with this issue. And you're right, those garlic and onions are NOT good.

Good luck to you as well!  

Jen

Hi Jen...

Before pouchitis came along and things were doing fine, I would average likely 6 to 7 a day and up maybe 2 times in the night.  Of course changes in the amount you eat and what you eat.  I was pretty fortunate for so many years with my pouch being healthy that I still enjoyed my deep fried chicken wings and fries with my burger... but I know my body did not appreciate that stuff and I was in the can more than I wanted to be paying for my sins.  

I've been an airline pilot for all these years with my pouch and I was able to function... of course it has sucked the joy out of my job a lot with the urgency to go and cutting my sightseeing down on layovers for fear of not having access to a public washroom.  But that being said I feel blessed I have been able to do the job I love for all these years... with the pouchitis coming more often, I think I might be retiring about 5 years early to take care of myself.  It's next to impossible to eat healthy in the airline world.... and the hours are brutal not to mention the stress of the job at times likely attacks what I guess is my weakness... my gut.  

Mark

What is Symax?  I have a story too but am eating now I'll be back after that. 

Janie

God bless you Mark. Any time I fly my pouch pays for it.  I used to attribute it to the sheer stress of flying on your body  

I have learned that living with a joouch is unpredictable. I have great days followed by horrid days with no explanation as to why.  I guess you have to just keep trudging on.   

Mark- thanks. I do concur about stress playing a big role in flares. I know the stress of being a first year teacher, as well as some huge stressors in my personal life most likely caused this 1st flare of pouchitis. I am hopeful that it won't be a recurring problem, but if it is, then I'll deal with it. 

Jeane- My symptoms are very unpredictable too. One day good, then the next bad. Very inconsistent. Not sure why. ?? Anybody have any thoughts on this. I do/eat about the same and have same stressors every day lately. Not working currently, so don't have that added stress. 

JanieP- Hi there! Symax (also known as hycosamine) is a prescription drug that slows down the BMs. Unfortunately my insurance doesn't pay for it, but I'm very sensitive to drugs, and can't take many of them due to allergies or intolerances, and this one works for me. It comes in 2 strengths. I take the .375 2xs a day. But it also comes in what's called "fast tabs" .125 (I believe) and you can take 2 every 4-6 hrs. (or however the doc prescribes to you).

Good luck to you all! 

JenB

I guess I am one of the lucky ones; 3-4 times a day, nothing after 9:00 p.m. and usually not until noon or so the next day.  I am a semi-retired teacher now working in Birth to three so I schedule my home visits earlier in the day and try to be home by mid-afternoon.  I am on the road so if I have to I can stop by a store, Starbucks or a Dunkin Donuts.

JenB, if your insurance denies a medication you can appeal based on medical necessity. The process often requires persistence and can be a nuisance, but it can also save you real money. It works best if your doctor is willing to write a letter supporting your appeal.

CTB23.... omg. What is your secret??? Or who was your surgeon??? You are lucky!!!

Janie

Thank you Jen B!!!

I have no clue.  I am only 5 mos. out from takedown, so not sure if when I introduce more foods it will change.  I do take 2 Immodium before bed because I was having leakage, and Benefiber at breakfast to bulk things up.  I do eat most vegetables, although not cabbage like, mostly because I don't like them.  Still working on fruits.   We'll see.  I had my surgery at Yale with Dr. Reddy who I really like.  Even he is surprised at how well I am doing. I was out within 2 weeks of surgery and also eating out, probably crazy, but I did ok.

Dear CTB23,

That's AWESOME! I'm so happy for you that your symptoms seem to be so under control. What kind of teacher are you that you teach birth to 3 and at home? Maybe I can look into this as a career option for me. Would love to know more...

Scott,

Thanks for the suggestion. I called today insurance about this today. So we'll see what happens. Thanks again!

 Jeane-

Like you said, maybe living with a pouch is just unpredictable.

Thanks all for the input!

JenB

I love Dr Reddy!!!!  How was Yale?  I am contemplating having him do a strictureplasty on me. 

I am certified in Special Ed/Early Childhood-in Connecticut. It allows me to teach Preschool special education as well as children under the age of 3.  I work with parents and children in their homes and in the community.  It works well for me because I can work per diem and just take cases as I like.  I work 3 days a week, but like I said, I like to get home by mid-afternoon.  I did work in the school system before diagnosed with UC, and was able to retire with just under 20 years.

My doctors keep putting me off with the fiber and I really think that is what my diet needs!!! Benefiber Wafers? I go a lot. My takedown was over a year ago and everyday is different. The nights are a killer for me! I'm tired all the time because I have to get up and go to he bathroom 3-4 times a night. I hate it! The days aren't bad though. I take Imodium and Lomotil throughout the day and im on VSL#3DS. I had my first bout or what we think was Pouchitis. I cannot take Flagyl so I am taking Cipro ... 2 pills a day. And I'm afraid to stop. Quite frankly, I think I've had Pouchitis since my small Bowel Obstruction which was Feb. of last year. That was AWFUL!!

thanks for your feedback!!!

Janie

In addition to what I just posted above... CTB23... you eat veggies?? Are they cooked or raw and which ones... wow... you are doing GREAT!!!! Keep it up ❤

Janie

I had overall good experiences with Yale.  The first surgery I had a roommate and the last two I was in a private room.  The private rooms were really small. The staff for my first two surgeries were great!  The third time they were good, but it just seemed that there was a lot going on, I think there was a more difficult case, that took a lot of their time.  Still they were pretty good when I needed them.

Hi Janie,  

Yes, I eat broccoli, asparagus, green beans, zucchini, acorn squash, carrots and red, green and yellow peppers for the most part, cooked.  I sometimes eat a small amount of salad/tomato or with a burger/sandwich.  Today, I had a pear and did notice a much more watery stool, but I also had a pasta, chicken and broccoli dish for lunch.  The other day I cooked up sweet and sour chicken with peppers and pineapple for dinner.  I also do a stir fry beef (with tenderloin) with snow peas, mushrooms and onions, though I limit the onions and mushrooms for myself.  The only times I have had difficulty is when I am away, but I try to have bulking foods with me.  I was in Oley, PA, the first week of December and ate at a diner around 8:00 and definitely paid the price for that.  

I had overall good experiences with Yale.  The first surgery I had a roommate and the last two I was in a private room.  The private rooms were really small. The staff for my first two surgeries were great!  The third time they were good, but it just seemed that there was a lot going on, I think there was a more difficult case, that took a lot of their time.  Still they were pretty good when I needed them.

Jeane-does Dr. Reddy do your pouchoscopies for you or do you have a G I doctor do them.  I will be having my first one this summer with Dr. Reddy.  If so, does he have you do a prep.?

I have my pouchisvopies w Dr Deborah Proctor who is the GI  head of Yale digestive diseqse. I really like her.  She works in tandem with Dr Reddy. Yes.. prep is no food or drink after midnight and two fleet enenas morning iof scope. Personally I only do one fkeet enema followed by a warm water enena and my prep is always good. I just hate the fleet enemas.  Thank you for the info.  I appreciate it. 

Damn...my nights are awful too! . No matter what I do I am up at least two times, sometimes three times a night. 

@Jobs q. I cannot answer the J-Pouch question, unfortunately. I am frustrated with Data outcomes vs What ppl are being told, even though I have an ileo for 12 years. I was young, not even drinking age. That being said, it's good you have a career already and got your degree. I assume you have a bachelor's degree? If so, great! I bring this up bc, if you ever thought about going back to school? Working and studying are 2 different birds. So I had to ask. If so, possibly Health Information. Just a thought. 

@Op What was your output before pouchitis? 

From a food perspective again, I can only comment from an ileo point of view. So I do not know if I could help. I would say, Milk after 8-12Oz....can go through me....like bang! Especially if I didn't eat much. That being said......I about 6 years ago went from 142lbs-146lbs( some docs were a little concerned.....One even prescribed Megace( used for cancer patients ) it increases their hunger. Took the stuff once or twice that is it. Reason? I noticed it can increase estrogen and progesterone. Which is probably why it can cause gyno...Yeah, so I went a different route as soon as I seen this.. When you uptake Estrogen, in Men, it would block DHT( a male masculine hormone ) also by doing as such create slightly more testosterone that would then convert to more estrogen. However, I digress. I mean it's only science, not rocket science. However, I know just as a fact, whey Protein absorbs quick and is out quick. In fact, that is what makes it so attractive to bodybuilders, in some cases. Maybe one of the best as far as putting on weight in the form of muscle, is whey protein. However......when you loose your health, your not willing to take those minimal risks as if you were healthy. So, I switched to Egg White Protein and Dropped the Megace....oh yeah I still kept the medication, I don't know why, maybe as a reminder.....

Anyway, to the meat and potatoes( Mhhmmm Sounds good, be glad if everyone could eat those ) of this reply. I took Egg White Protein bc It's slow absorbing, and the body naturally recognizes it. Our body's have been getting eggs for years. Human's as a whole, the body would probably recognize this better. So why not? Also, Ensure. Ewwww....Yes My protein drinks were, Ensure and Egg White Protein ( it's not that bad ). Eggs white also had a high profile for Amino Acids. Ensure is lactose free. 

I also, tried not to stress as much. I would say, I took on a borderline selfish attitude...but you know what, you have to sometimes. Selfish might be harsh, a more no non sense approach would be fair. Not you know those speeches that some specialist give, " If you were my Brother...or...Sister...etc." 

I also, ate to build. I went against some ileo advice, eat small 6 meals a day. I went with 3-4 meals, but bigger portions. 

No fast food, No caffeine, yes I ate Fruits, Veggies...Anything. Of course, a moq meal was this: 2 Fillet Salmon, 2 servings of rice, and applesauce. 

At first, I only ate 1 salmon, 1 serving of rice, as my body was not use to this type of eating in some time. Your stomach, needs to adjust. Also your appetite has to as well( adjust ). So it was a slow process. However, salmon is an anti-inflammatory, rice...is I would say a neutral food, and applesauce is a little thickener, plus was fine with it, again an ileo, no j pouch. So, anyway....for lunch, turkey, no pork, no ham, even if you don't believe in the bible or not, there is a phrase, About cud and hooves.....AKA indicating do not eat Pork, Ham etc. Also, all natural bread, yogurt( Trix yogurt was my go to ), and all natural potato chips. 

Breakfast, eggs, oatmeal, turkey bacon etc...

Anyway, I will wrap this up.I can get more indepth on specifics of a topic if I am asked...as this is long. I empty my bag about 4-5x a day.

Dear CTB23,

Thanks for the job info! I was wondering how you go about getting into work in people's homes? Is it as a tutor perhaps? What about the community like you mentioned? What is your job title? Not trying to be nosy, but just trying to figure out how I can work. I am 40 years old and single, so I NEED to be able to support myself. I don't want to have to burden my family (although they are very supportive in every way) and my wish is to live independently and be able to pay all of my own bills. Good luck and thank you!

Dear Crazy1/CTB23, 

Thanks for the input. Yes, I have a Bachelor's Degree in Recreation and Parks Management and a Teacher Certificate. I have subbed (in all classrooms- a lot in Spec. Ed.) and worked one year as a Kinder Teacher. I have experience designing camps/classes for kids in recreation for those with special needs and those without. I feel that I have enough education and really don't want to have to go back to school. (Still working on paying loans for degree.) ha!Ha! 

I think my output before pouchitis was around 6-8 a day? It's hard to remember honestly. But it was manageable. Closer to 6. And I could work and get to the restroom every 2-3 hours. No problem.

I know what you mean about the stress. It totally gets me! I'm working on handling it in more healthy means-added a lot more exercise, journaling, distracting techniques, relaxation techniques, etc.

Also, that's definitely good about frequent small meals. I do that too. My doc also said it's good.

I hope you're able to put on some more weight.  Good luck to you!

Thanks!

JenB

If anyone else has any other suggestions for good career options, or how they handle working during pouchitis, I would REALLY appreciate the input!

My job title is Developmental Therapist (TEA)-teacher.  In Connecticut to be a teacher in Birth toThree, you need to be certified in PreSchool Special Ed.  So whatever state you are in, I would look at their State Website.  We basically work with families to help them to teach their children, based on disabilities, mostly communication and autism spectrum disorders, also cognitive and physical disabilities.  We work at times with teams including physical and occupational therapist and Speech psychologist.  As far as community, we may accompany parents with their children to playgroups, doctor appointments etc, where they may need support.  I work for a private agency under State guidelines.  With my company, in order to get health insurance, you have to work 30 hours a week.  There are some drawbacks, such as if a family cancels, due to illness etc., you don't get paid.  I also complete evaluations and write up plans for children and families, based on their needs. Anyway, that's about it.  There is more involved, of course, but this is it in a nutshell.

CTB23,

Fantastic! THANK YOU for the info! I will definitely look into this and see what more I would need to be qualified. Perhaps a masters? I will research it. Sounds good. 

Good luck to you!

JenB

JENB,

Some of the people I work with have come in as assistants and worked on their certification at the same time.  I worked in the school system as an aide while going to school.   One of the colleges here even offers an online program.  Like I said, check with your state website to see what's involved.

I've always been stuck with so many every day, I never counted.   All I can say is it's just ridiculous. 

Hello Jeane,

If you ever want to talk, let me know.  Not sure where you are in CT, so if you want to PM me that would be great.  It would be nice to share information/experiences with someone close to home and close in age.  I have my sister, but don't know anyone in the area that has been through this.

Thanks,

Chris

Thanks again, CTB23!  I'll look it up. 

sorry, Scott. I know. It's very frustrating. You're not alone. Hang in there.

JenB

Thanks Jen, yeah I wish there was a way for us all to escape this miserable dilemma.