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Greetings,

I am having the worst case of pouchitis since my take down in 2015.  I am currently on Flagyl but it makes me super thirsty.  How long until I will start to feel better?  I am bloated, unable to pass gas as I was before and it's very painful.  Side pain, runny stools and urgency to go.  Any suggestions to prevent this from occurring again?  I do feel fortunate in that this is my fourth bout with pouchitis in 6 years. I was supposed to go on vacation today and had to cancel due to the fatigue, pain, etc.  Any suggestions appreciated.  I began the medicine today as well and have been eating yogurt and drinking lots of water.  I have absolutely no appetite.  Thanks for your help!

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THanks Scott!  My prescription is 250MG TID for 10 days.  Today is my second day taking them.  I will say this is by far the worst case I have had and nothing like the "flare ups" prior.  My prior experience was some bloating, blood, pain, change in color and smell and I would take Flagyl for a few days and stop when I got better.  I never completed the whole prescription.  This current bout is completely different and although I have the classic symptoms, it has me questioning some changes to my diet.  I work out multiple times a week (biking typically) and was supposed to leave yesterday for a week long biking road race trip across my state.  Unfortunately, I am stuck at home in bed.  My diet is fairly healthy as I enjoy all veggies and fruit.  I typically have a protein shake in the AM and a small lunch as I don't want to be in the restroom all afternoon at work.  My evening meal is a balance of protein and veggies.  I do indulge in ice cream once in a while and may have a cupcake at a birthday party but do not have those items in my home.  I am curious about the probiotics mentioned in this group.  I do eat whole milk yogurt sometimes but would like to learn more about probiotics.  Can you guide me on some research or where would be a good place for me to start investigating the benefits of this?  Thanks for all your help.  I do feel blessed to be able to have a functional life but it is easy to feel blue about my current situation.  This group has been very helpful to me!

L

I guess I should share my story as it is not your typical case.  My sister was killed in January of 2013 and that first Christmas after her death, I had some blood in my stool.  It became worse and I attributed it to stress of the anniversary and Holidays but went to my doctor anyway.  I was prescribed Flagyl and it went away.  The following year at Christmas (2014) the blood in the stool returned with fatigue etc. but I again attributed it to stress and I was traveling out of state.  It did not get better when I returned home from the holiday so in early January of 2015 I went to the ER because I truly thought I had food poisoning.  I was admitted and told I had UC and was going to lose my colon.  Ten days later, while in the hospital, my colon perforated and I had emergency surgery.  I had several issues after surgery with infections with the incision sight and skin burns from the ileostomy.   Due to my age and active lifestyle, I opted for the j-pouch surgery.  While receiving a body scan prior to my surgery, they found a large mass on my ovary and was not sure if it was malignant.  They would not know until the day of my surgery for the j-pouch.  Fortunately, I did not have cancer and the mass was removed along with ovaries and tubes while I had the reconstruction.   My take down was five months after my surgery.  So I had all three surgeries within 11 months.   Not one doctor believed I did not have issues prior to the perf of my colon due to the condition of it was in but it is true.  I have a wonderful specialist and had my first scope two years ago where he stated there were signs I had at some point had pouchitis, so he offered a prescription as a PRN.  My next scope is in October and I have only used the PRN twice in the last six years so this new bout is pretty severe for me compared to before.  I guess I am not very in tune with myself for when I have a infection and am realizing I need to learn more.  Thanks for listening and the support!

L

One of the best summaries of probiotic research I’ve seen is the CareFirst Blue Cross probiotic policy. I posted the updated location/navigation here: https://www.j-pouch.org/topic/...4#663214202801915104

Note that the research on “VSL #3” was on a product that is now called Visbiome. The current product called “VSL #3” is a slightly different formulation (that’s the one I use, for insurance reasons).

Scott F
@La-Te-Da posted:

I guess I should share my story as it is not your typical case.  My sister was killed in January of 2013 and that first Christmas after her death, I had some blood in my stool.  It became worse and I attributed it to stress of the anniversary and Holidays but went to my doctor anyway.  I was prescribed Flagyl and it went away.  The following year at Christmas (2014) the blood in the stool returned with fatigue etc. but I again attributed it to stress and I was traveling out of state.  It did not get better when I returned home from the holiday so in early January of 2015 I went to the ER because I truly thought I had food poisoning.  I was admitted and told I had UC and was going to lose my colon.  Ten days later, while in the hospital, my colon perforated and I had emergency surgery.  I had several issues after surgery with infections with the incision sight and skin burns from the ileostomy.   Due to my age and active lifestyle, I opted for the j-pouch surgery.  While receiving a body scan prior to my surgery, they found a large mass on my ovary and was not sure if it was malignant.  They would not know until the day of my surgery for the j-pouch.  Fortunately, I did not have cancer and the mass was removed along with ovaries and tubes while I had the reconstruction.   My take down was five months after my surgery.  So I had all three surgeries within 11 months.   Not one doctor believed I did not have issues prior to the perf of my colon due to the condition of it was in but it is true.  I have a wonderful specialist and had my first scope two years ago where he stated there were signs I had at some point had pouchitis, so he offered a prescription as a PRN.  My next scope is in October and I have only used the PRN twice in the last six years so this new bout is pretty severe for me compared to before.  I guess I am not very in tune with myself for when I have a infection and am realizing I need to learn more.  Thanks for listening and the support!

I am so sorry about your sister, she is in a better place. I bet she is proud of you

FM

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