Recently taken-down friends

I eat a medium sized breakfast and snack for lunch. I eat a larger dinner. I never have to wake up at night.

When I had a colon I wouldn’t eat breakfast but would eat lunch and dinner.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

I went to the bathroom at 9pm last night and no salad seen, and then I went at 8:30am this morning with salad output. 14.5 hour transit time. I could have held it much longer but went because I was on my way out the door for the day.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Everybody different?? maybe

I ate a lentil stew Tuesday evening for dinner (and paid for it later - enough gas to inflate a hot air balloon!). I ate about 6:00 and I believe I saw lentils in my BM about 2 or 3 am.

I bet everyone is somewhat different in transit time and that it also varies with the health of the person and with the diet, not only of that meal but of a day or two before a certain meal. My transit time always seemed faster when I was in a UC flare than when I was in remission.

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Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Hi Champ - I am doing well for the most part! Usually going 9 times a day, which includes 2 times at night (and I've been getting up 2 times a night for bladder anyway for years). I've realized I'm just doing stuff, not thinking about "can I do this without needing the bathroom in the next hour" any more. So, my work is going fine, which is some in office and some out at different locations, - except that I do have some evening meetings, and like you, I have that bunch of bathroom trips between dinner and bed. So I trying not to attend too many night meetings!

I am still taking Immodium before each meal and Lomotil at night. Need to start cutting down, but I want to feel like I'm really ok before I start doing that.

My stool varies from liquid to soft semi-logs. Seems to depend on what I eat. Metamucil helps; I am taking less than half of what I used to take for years with UC!

I am still losing weight since the reversal, but I've always been borderline obese, so this is wonderful. 45 pounds for me since before chemo. I weigh what I weighed when I got married 37 years ago!

I went to a work-related dinner meeting a few days ago where a vegetarian Middle Eastern meal was served (hummus, baba ghanoush, curried lentils) and went 12 times a day for two days after, gas all night (waking up each time to feel if it was gas or BM..) and butt burn.... exhausting week!

Adding to my life is that my mom (age 92, COPD for 20 years) just gave up driving, sold her car, was dxed with a 2 x2 x2 inch mass in a lung and wants nature to take its course.....so I am doing a lot for her. Hello, stress.

I wonder how valli is doing on vacation!

Best to you -
SLMeg

---

Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Hi everyone
Vacation was wonderful, we visited St Lucia on a cruise this summer and went back for a few weeks because I literally fell in love with the island and people. If you ever get a chance to visit stay at the Royal resort and spa it has the best beach on the island and to me the best staff which went out of their way to always check in on me and make sure I was OK after running to the bathroom.
I learned the hard way last year to relax and take life easy stress will kill you or at least take your colon... so enjoy life travel and take life a day at a time. Wish I did all that before...

Well I learned alcohol and my new pouch do not want to work together ( rude pouch ) lol. I would only have a few drinks a day most of time just pina colada not sure if it was the sweet sugar or coconut cream but I would often run to the bathroom and just make it in time. Our room was located just steps away from the beach which made life easy.
I wish I could say I'm doing well like a few of you already, but my bathroom trips have not decreased at all. Today I had homemade pancakes around 10 am with blueberries yes I know blueberries are off the table right now but there were only a small handful of them anyways about 4 hours later did I pay for that I must have gone at lease 5 times in over an hour and still am having a off day. If I had to guess the amount of trips today I would say an easy 15-18 and bad cramps. The butt burn is unreal even on holidays I had to jump into an Epson salt bath a few times a day, I found the ocean stung my butt a lot... but that didn't stop me from going in , I'm a beach kind of girl so the ocean is my best friend butt burn and all.
I have a scope coming up the first week of December I hope she can find out what is going on...I need to know if this is normal or just an adjustment stage.
How is everyone else ???

---

47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown

Thank you Songlady the holiday was what I needed. And 6 times a day that’s awesome , I agree sometimes it’s what you eat . But there have been times I eat only bland foods and it still kills coming out . Like you chocolate doesn’t agree either does wine ... what is left to have if we can’t consume either lol
Good news my surgeon squeezed me in tomorrow morning for my scope. There is no way I could have waited till December the pressure is only getting worst .
Will let you know how it went
I am being put out so I shouldn’t feel anything ... well let’s hope

---

47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown

Valli let us know if they find anything. We're all different it seems. I didn't go at all during Day yesterday besides after waking up. Breakfast is very light if anything. Was too busy to think about it So far have gone 2x since I got home from work. Ate very light today so maybe that's why low BMs. I'm a recovering alcoholic(29 years sober) so no alcohol here. Everything going very well here. When I don't have time to overeat I'm usually good. Contracting buisness is 10-12 hour days so that keeps me busy. 12 weeks today since surgery 3. God bless

Hi guys thanks for the reply ks1905, NSSG, 3TC and Songlady
I know something isn’t right ... I see we are all a bit different I get that now and food can trigger it plus whatever I have is also triggering the amount I go plus the pain . 3TC I wish I only went a few times like you had the other day . I am glad all is well for you ... that is my goal.
To answer the antibiotics question I took it for 5 days the doctor said if it didn’t work in a few days get off since I was going away it wasn’t worth staying on . So I am assuming another one or two antibiotics will do the trick
Its at a point where I just want to feel a bit normal waking up with bum pressure so bad that I have to race to the bathroom to elevate the pressure then having to jump into the tub with hot water to soak myself because the pain is unbearable ( sitting in the tub now its 2:50 am ) this isn’t how I invisioned my life with a J pouch )
I hope this can be resolved tomorrow and I can start to get it under control.,

---

47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown

Valli keep up the fight. Your a power of example to me and you will be to others. As with what we went thru with active UC you and your Dr will find out what u need to get better quality of life.

Post Edited (3timechamp) : 11/14/2018 10:27:05 AM (GMT-7)

When I first got my jpouch I thought that all of my problems were just the adjustment period but they were actually pouchitis.

I would think that ulcers would be a give away that you need treatment and most likely antibiotics.

Where were the ulcers located? In the pouch or above/entrance to the pouch?

What’s the downside to trying a different antibiotic? Why should you suffer and wait for the biopsies?

I’d start looking tomorrow for a GI with Jpouch experience.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Valli,

Were you able to get a different antibiotic or combination of antibiotics?

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

I wake up and go about an hour later, then again around 3-4PM and once before bed. I never wake up at night to empty. I average 2-4 times a day. Most of the time it’s 3.

I eat and drink whatever I want.

You could ask for some antispasm meds to help with your spasm issue.

My first 6 months were very rough. At one point I was bed ridden for a week because of pouchitis. I have ulcers in my pouch too.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Post Edited (ks1905) : 11/21/2018 7:14:07 AM (GMT-7)