What is your daily routine like?

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ToughKicker
Regular Member


Date Joined Sep 2005
Total Posts : 218
   Posted 12/31/2017 6:29 PM (GMT -7)   
Hello everyone, hope everyone is doing well.


Well it's been a year since I had my surgery, now I've been wondering about my goals. I want to go back to school, & go back to competing in sports again, the problem is, I go to the bathroom in the afternoon & evening, & something it feels like I'm about to have an accident (don't worry, I'm wearing depends). So I just probably just need to change my diet. I was wondering what is your daily routine like? How many times a day do you go to the bathroom? Thanks


Happy New Year

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4889
   Posted 12/31/2017 8:30 PM (GMT -7)   
I go between 1-5 times a day, no urgency and I can hold it for hours. I go when I wake up and before I go to bed, I do not need to wake up at night to empty my pouch.

I don’t enjoy spicy foods anymore or eat fiberous foods. I’ll eat a steak before I eat a salad, which was the exact opposite before I got uc. I drink a lot of water and I’ll drink alcohol whenever I feel like it.

Have you had your first scope yet?
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

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4889
   Posted 12/31/2017 8:36 PM (GMT -7)   
Are you taking a good probiotic? They really help me
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

ToughKicker
Regular Member


Date Joined Sep 2005
Total Posts : 218
   Posted 12/31/2017 8:40 PM (GMT -7)   
I haven't had a scope yet, I'm supposed to see my DR on jan 18 or 19. I haven't had no probiotic yet
UC: Lower Left Diagnosed in July 2005
Remission



Azasan 75mg 2 tablets daily

Apriso 0.375g 4 tablets every morning

Sucralfate 1gm 4x a daily for stomach ulcer

Trihexyphen 2mg 1x a day for Mental Disorder

Invega 9mg 1x a day Mental Disorder

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15678
   Posted 1/1/2018 9:53 AM (GMT -7)   
After surgery, you really shouldn't be feeling like you are about to have an accident. Getting checked out is a good idea. I personally never wore diapers, but diet definitely impacts how often, and the consistency when I go. That said, I don't think it's a "cure all". If you feel that your life is impacted in a way that makes it impossible to achieve your goals, something is not right. I live normally. I go more often, but no more often than I pee. I empty my pouch when I am in the bathroom. Other than that, I can do everything.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4889
   Posted 1/1/2018 9:05 PM (GMT -7)   
Make sure they do a stool sample and some blood work, just to rule some stuff out.
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

Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 479
   Posted 1/3/2018 10:26 AM (GMT -7)   
notsosicklygirl said...
After surgery, you really shouldn't be feeling like you are about to have an accident. Getting checked out is a good idea. I personally never wore diapers, but diet definitely impacts how often, and the consistency when I go. That said, I don't think it's a "cure all". If you feel that your life is impacted in a way that makes it impossible to achieve your goals, something is not right. I live normally. I go more often, but no more often than I pee. I empty my pouch when I am in the bathroom. Other than that, I can do everything.


I think the only thing I can't do and don't think I'll ever be able to do would be things like for example go on a day long boat excursion on smaller boats without a bathroom. I know a lot of my friends go to 4th of July celebrations along beach shores in GA/AL/SC where everyone pulls up in their boat and drinks on the shoreline for the day. That I don't think is in my future anymore, but most everything else can be planned. I find the pouch to be very predictable, for me usually 5-6 hours after I eat I have to go.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4889
   Posted 1/3/2018 10:44 AM (GMT -7)   
You could take an immodium or three before you go out on the lake. I'd test it before I went on the lake for the day. Have you tried fiber supplements?
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15678
   Posted 1/3/2018 11:01 AM (GMT -7)   
I wouldn't go on a long day boat trip without a toilet either. Honestly, I have no interest in doing that anyway. I hate feeling like I have to hold it, even if I have to pee. I'd be the person who rented the boat with a bathroom... Just like I'd rent RV if people went camping. smile
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4889
   Posted 1/3/2018 2:17 PM (GMT -7)   
I can easily go 10-12 hours between bms. I know that I am fortunate for that except that I have chronic pouchitis that needs medicine.
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

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15678
   Posted 1/3/2018 3:05 PM (GMT -7)   
I can go a long time without too, but I don't like to feel obligated to "hold it". I try to avoid places without toilets. I don't go camping or on boats without bathrooms (lost interest in that type of stuff when I was a kid). I guess I am "high maintenance" compared to many people. I have friends who do all that stuff, but I am not interested. I wouldn't stay in a hotel/motel with a shared bathroom either. I know some people will do that, but I don't. I don't even like staying with family if it means sharing a bathroom. I get a hotel room if I visit family. Probably an old habit from living with UC for so long.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish
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