What do any of you that have had pouchitis eat and drink while fighting it?

There's nothing special you can recommend for anyone. Just listen to what your stomach wants, not so much your brain, that will usually do.

Avoiding things that are too raw, too hard to digest or that provoke your already harmed bowel additionally is something you're doing anyway I guess.

If you already take antibiotics there should be an effect soon (within 1...2 days), if it's really a pouchitis caused by bacteria.

Steve

1. Hi Steve. Thank you for the response! I am also feeling weak and not sleeping well. My doctor prescibed Cipro and at 4:00 p.m. it will be 48 hours since I started the Cipro. My doctor also prescibed Trazadone for sleep but I would wake up 2-3 hours later, then go take another, so it was not working as I had hoped. Doc then prescibed Mirtazapine, took it for first time last night. My body was super tired, my mind was not. I have no energy. I am exhausted. I had some Cream of Wheat for breakfast with decaf tea. I just now had some rice with half cran-apple juice, half S. Pelligrino carbonated water. I wish I could sleep during the day. I equate this recovery time with my recovery after colorectal surgery. The Cipro has thickened stool up only slightly. Hopefully tomorrow will look brighter. 

You should try the combination with metronidazole (Flagyl) if the cipro alone doesn't do. That's the most common antibiotics combination for treating pouchitis. I always have 400 mg Flagyl and 500 mg cipro twice a day (for breakfast and supper) when I have increased pouchitis problems.

Does your doctor suspect that you're dealing with a depression? He prescribes sleeping drugs that are mainly antidepressive medicine. I luckily had only once in my life a depression, but the medicine I was prescribed at that time hindered me from sleeping.

Have your blood levels been controlled? If you're always tired that may be a lack of iron or B12.

It's difficult to tell from your description, but I wouldn't worry so much about eating and drinking but about the reason for your problems, may it be pouchitis, a lack of something or both.

Steve

I have a reaction to Flagyl. My doctor told me to give it a week and if things were not improving, she will add Rifaximin. I am feeling depressed because of this situation right now. My doctor first prescribed Trazadone and it put me to sleep quickly, it is staying asleep that is the problem. I would fall asleep and 2-3 hours later I was awake taking another Trazadone. I then was given Mirtazapine. It gave me a bit of anxiety and did not put me to sleep right away, then next day felt like a zombie most of the day. I just want to feel better. It may be depression, I have multiple stressors in my life. I was adopted but know depression runs on my bio mom's side. After being adopted, my bio mom married and had two boys, my half-brothers. My oldest half-brother committed suicide when he was 19 in front of my bio mom's place of business, carbon dioxide built up in his car. My second half-brother shot his loyal dog, his wife, then himself in 2009. My bio mom starved herself (a form of senior suicide) on April 8th of this year. I know if I can take care of my own issues, I will be okay. I have three beautiful grandkids that I would like to see grow up. The only time I was in a dark place was after cancer surgery, back home, trying to deal with it all. It subsided and I hope it never comes back. 

I have been taking B12 tablets but have thought about an energy boost with a B-vitamin shot. I think with more sleep I will be as right as rain.

Thank you, again for taking the time to respond to my posts.

For sleep have they given you Ambien? Some doctors don't like to prescribe it because it's very addictive, but I am a chronic insomniac and have found it effective. It can't be used for more than 30 days though.

As far as your biological mother, the exact same thing is happening now with my mother. She is 85, has lung cancer and then broke her hip and had an emergency surgery in April. Since then she has been unable to get out of bed, unable to rehab her hip, unable to resume cancer treatment (which had been effective), and although she isn't in pain her quality of life is zero. So she has stopped eating, has lost a ton of weight, and although I don't sense depression she is resigned to death and mostly is just talking about what she wants to happen upon her death. All of this has taken a tremendous emotional toll on my father, who is healthy and visiting her daily apart from a couple of shutdowns due to nurses contracting Covid. But it's now basically a Hospice situation with my mother, and because she and Dad are in Florida, it's not feasible for me to visit and my father has forbade me from even thinking about it. So I can completely relate to what you are saying on that.

Oh no, I am so, so sorry about your mom. It has got to be painful for you not to be there. I hate this Covid. I feel for your dad, it must be so hard on him. I wish you could be there.

My bio mom had many issues. She was a Type 1 diabetic, had two strokes, had a baby toe amputated due to the diabetes. I believe she gave up too. I had tried to be in contact with her but it was so hard to understand her due to the strokes. May 8th I had contacted her sister on Facebook to see how my bio mom was, it was too late. I feel bad, I know she really wanted me in her life. Due to how complicated my life is due to bathroom issues after cancer surgery in 2009 and not wanting to hurt my adopted parents, I shied-away.

I will need to contact my doctor to see if Ambien would be good. I will still need to get up at night, for as long as I can remember, I get up to pee but lately to poop due to very loose bowel movements. I have beenon Cipro since afternoon of the 26th. My stool has thickened slightly but is an orangy color and no smell. It is strange. What is your thought on Valium, if any?

Thanks for responding to my posts.

Valium can be used for sleep but it's more of an anti anxiety medicine. I have only ever taken it for flying on airplanes and not for sleep. For sleep, ambien worked well on me. My father is now taking ambien to sleep, due to the stressful situation noted above with my mother. He told me he has been taking it since April, although he only told me about it around a week ago. It's apparently helped him. He has a separate issue now with a swollen prostate, which is causing him to urinate excessively from what he has told me. It does upset me that Covid has prevented me from traveling to see my parents. I last saw them at Thanksgiving last year when I flew down for a full week with them. I normally would have returned in March or April but didn't due to Covid. My parents are in assisted living, my father in the residential building and my mother in the medical center, and I am not even sure if they are allowing guests anywhere on the premises at this time. My father has also told me to not even consider coming due to Covid. So it's a tough situation, but I do talk to them daily by phone.

Oh gosh. I hope your dad will be alright. I am so sorry. I am glad the Ambien is working for him. My dad had surgery last year due to a large prostate, he did well. I has to be very tough for you not to be with your parents.

I will see how I do tonight with sleep, I kept busy today. I had taken not long ago medical marijuana edibles for sleeping, worked well but the sugars were a problem. I think my fear of sleeping is the incontinence. When my mind relaxes, so does my butt hole. It happened a little during the day yesterday when I was able to take a short nap, I was mad. I will be putting a diaper on tonight, though I don't like pooping in those either. 

Are you able to eat anything you want with your pouch? How do you go on a plane without being nervous about bathroom issues? Or is that what the Valium is for? Do you do any special prep when you have to go on a plane? I am terrified to go out too long. I had rectal cancer so I am not sure if our new systems are quite alike. When I go shopping,I don't eat until I get home. I just started taking Biome this morning, hoping it will help with the bathrroom issues. I will be changing my diet up, but I can't completely give up my comfort foods.

It's a difficult situation for both of you with family issues and Covid even making it worse. I know from my own experience with relatives, that people somtimes give up when they feel that life isn't worth living for them any more. I try to tell myself that they may be better off after leaving us and not to look at it as a personal loss.

About sleep, I didn't use any drugs except very light natural ones on sparse occasions. There was a period of several weeks in 2013 when I would wake up every hour at night with my stomach hurting a little, get up and do some little exercises and fall into sleep again for another hour. But usually I sleep quite well now.

Changing diet in small steps can encourage you to have control over things. But I think it is also advisable to seek recreation and get your mind free (tried yoga?).

Steve

Valium on planes has nothing to do with bathroom issues as I have no bathroom issues. I was in a near plane crash in 1990 and had a fear of flying for around 20 years. Eventually I got over it.

I eat anything I want. I try to avoid carbs and sugars but other than that general avoidance eat a full diet. Comfort foods are not necessarily the best for a J Pouch or general health and well being. I try to eat Whole Foods and limit carbs, sugars and processed foods.

Wow, that must have been terrifying on that plane. I am 53 but have not been on a plane since I was 17 and pregnant with the first of my two daughters. The turbulence, it was so bad, people were panicking on the plane, including me. Now I wish I could travel. My system is different, I had a portion of my rectum removed due to cancer. I have had too many close calls when out, that when I do go out I worry. I had 28 days of radiation and carried a chemo bag attached to a port in my left upper arm for 5-1/2 weeks. I believe because of the two, I have damage that messes with my bowels. Heck, I went into menopause within the first few days of radiation. It has affected my sexual health. I have been told by my oncologist that I always need to know where a bathroom is. I had trouble processing raw foods, and other culprit foods. Now time has passed, I will give the better diet a try. I have always run to food for comfort ever since my adopted mom sat me down when I was five and told me I was adopted. I remember so clearly. I felt unwanted by my bio parents and had those feelings until I was able to talk to my bio mom in my mid 20s. She very much wanted me and did have me for two weeks, she had named me Kimberly. My bio father had my bio mom and another woman pregnant at the same time. He chose the other woman and child. I have never been close to my adopted mom, she is cold and understanding. When I told her my bio mom passed away, she said "That's too bad". Not a "If you need to talk, I'm here". So, I have to talk to her to tell her how I feel. She is not only controlling with me but also my two daughters. It needs to stop. I need to heal. There is so much more over the years that she has done. Anyhow, I will give that healthier diet a try. I do want that it is just that my emotions run for junk. If I have to eliminate toxic people in my life, I will for my own health. Thank you for the posts, it really helps.

BTW, no accident overnight and stool is starting to thicken though I have been taking Immodium once daily today and yesterday. If things don't get better by Monday, my doc will add Rifaximin to ths Cipro. My mood is so much better today, got the most rest I had had in weeks. Body and mind are healing.

SteveG, I do have a yoga matt, just need to get on youtube for the begginer poses. Need it for my lower back, I have severe degenerative disk disease, in pain most of the time so need to try yoga for it. I just hope I don't injure my back. I had a herniated disk in 2014. Took a month to get to a specialist so now I have permanent numbness on the right side of my right foot and lower calf. I xan pinch myself and hardly feel it. Messes with my balance from time-to-time. I worry about it if I get older, I am 53.

I will change my diet slowly, good advice. I will get the yoga matt out and give yoga a try. 

Barb J, perhaps you find an opportunity for a yoga course when Covid is over. As a beginner it's good to have some feedback.

I've been doing yoga for 10 year now (just for remaining flexible, nothing special) and a kind of yoga flow, the Five Tibetan Rites, for about 20 years. If you reserve a certain time (e.g. in the morning, before or after breakfast) and do a little practicing every day, that's the best way to go.

Steve

I never had pouchitis in my almost 6 years of J-pouch life, I eat yogurt a lot, particularly Greek Yogurt- its has man probiotics in it

Hi Lauren of Emerald City. This was my first experience with pouchitis. I had done okay for 11 years. I have a feeling my diet caused the pouchitis. I just had some Greek yogurt. I am on my way to change my diet so hopefully it will not happen again. Thank you for responding to my post!

@Barb J posted:

Hi Lauren of Emerald City. This was my first experience with pouchitis. I had done okay for 11 years. I have a feeling my diet caused the pouchitis. I just had some Greek yogurt. I am on my way to change my diet so hopefully it will not happen again. Thank you for responding to my post!

Dang!! After 11 years you got pouchitis?!?! I thought for sure you would never get it since its been that long! I am sorry to hear that. What kind of diet were you on when you got pouchitis??? And no problem

Well, I was eating a lot of medical marijuana edibles. They did not seem to be working so took more and more. Pretty sure it was all the sugar, corn syrup and other ingredients that mimic sugar. I learned my lesson the hard way for sure. My doc just prescribed Remafin today on top of Cipro. I have been taking the Cipro for a week but it was not helping the way it should.

@Barb J posted:

Well, I was eating a lot of medical marijuana edibles. They did not seem to be working so took more and more. Pretty sure it was all the sugar, corn syrup and other ingredients that mimic sugar. I learned my lesson the hard way for sure. My doc just prescribed Remafin today on top of Cipro. I have been taking the Cipro for a week but it was not helping the way it should.

Why were you taking marijuana edibles??? 

My anxiety level was through the roof! It I did get a prescription for an anti- anxiety medication, doing so much better. Done with the edibles.

@Barb J posted:

My anxiety level was through the roof! It I did get a prescription for an anti- anxiety medication, doing so much better. Done with the edibles.

I am glad you are done with marijuana! I am soo happy you are doing soo much better! Quite a few people in our community are taking anxiety medicine, if you need it for life then definitely take it, I am very proud of you and hope you have a speedy recovery <3