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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/27/2008 8:21 AM (GMT -6)   
Hi Sue,
 
I forgot you had the j-pouch surgery too.....would you mind answering these questions?  I know each case is different but I am just curious.
 
1. how many bm's do you have a day?
2. how long can you hold a bm in for if not near a bathroom?
3. how long did it take you to be able to leave the house after the jpouch was done? and feel comfortable knowing you could make it to the bathroom in a decent amount of time (and what do you consider decent?)
4. do you still need to know where bathrooms are when you go places?
5. have you had any complications that are affecting you currently?\
6. kind of silly but......what kind of noises does it make when you go?  Is it relatively quiet or do you sometimes get quiet and sometimes get loud?
7. Do you fart and have gas, is that still the same?
 
TIA!

Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/27/2008 9:08 AM (GMT -6)   
 
 
1. how many bm's do you have a day?
 
I honestly don't know but if I were to guess I would say between 6-8.  But it's very different than with a colon and is as fast as urinating.  There is no pain or urgency once you have had some recovery.
 
2. how long can you hold a bm in for if not near a bathroom?
 
I would say I can comfortably hold it for 2 hours.
 
3. how long did it take you to be able to leave the house after the jpouch was done? and feel comfortable knowing you could make it to the bathroom in a decent amount of time (and what do you consider decent?)
 
I left the house immediately and started getting my life back.  For about the first 2 weeks post surgery I still did the mental notation of logging bathroom locations in town but one day I realized I didn't need to do that anymore.  How liberating!
 
4. do you still need to know where bathrooms are when you go places?
 
No!! 
 
5. have you had any complications that are affecting you currently?\
 
No.  I see my surgeon once per year for a biopsy.  We are still checked for colon cancer in the remaing 1-2cm of rectal cuff.  I see my regular doctor once per year for a pap and blood, urine, and mammogram.  I was anemic, had no B-12 stores, and had a chronic cough of unknown origin prior to surgery.  Within a couple months post surgery all my labs were perfect and have remained so.
 
6. kind of silly but......what kind of noises does it make when you go?  Is it relatively quiet or do you sometimes get quiet and sometimes get loud?
 
Sometimes there is some gas at the conclusion of a bowel movement which signifies a complete emptying.  Sometimes it's completely quiet.  I think a lot of it depends upon the types of foods ingested.
 
7. Do you fart and have gas, is that still the same?
 
Gas for me is most often odorless and silent and I assume the odorless part is because food doesn't sit in the system long enough to generate a bacterial action.  I get the most joy out of passing gas in meetings at work and nobody knows!  Most jpouchers cannot pass gas while standing (I can on occasion) but can by sitting or lying down. 
 
Sue

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/27/2008 9:12 AM (GMT -6)   
Thank you Sue and Beth! These are questions i think many of us who are considering surgery have wanted to know but not been able to put into words.

Remicade is working for me at the moment but I think that if (i try not to say when) i flare again I am becoming more comfortable with the idea of surgery.

Thanks!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/27/2008 9:50 AM (GMT -6)   
Hi Sue,

Thank you very much for answering these questions, it is really helpful and glad to know you are doing so well!

I am proud of my ability to fart and still hold an enema in (I need at least 10 to 15 min first though = )

Thanks again!!!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/27/2008 10:01 AM (GMT -6)   
Great questions and answers -- thank you both!
Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/27/2008 10:07 AM (GMT -6)   
Thanks for answering, suebear! I have a few more questions:

1. How sick/healthy were you when you had surgery and did you have any complications after or in between surgeries?
2. How long did you wait between the ileo and j-pouch surgery?
3. How long after your j-pouch surgery were you able to return (or start) a completely normal life?
4. How painful were the surgeries and how long were you in the hospital after each one?

Thanks :)
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/27/2008 11:36 AM (GMT -6)   
 
 
1. How sick/healthy were you when you had surgery and did you have any complications after or in between surgeries?
 
I was in a 2+ year flare when I had surgery but was maintaining health on 10mg of prednisone along with 22 other pills per day of the usual UC suspects.  I wouldn't have said I was healthy but I was able to work.  Weekends were spent at home trying to save up enough energy to go to work on Monday again.  I didn't have much of a life except for work.  I had ceased all social activites about 5 months prior to surgery because I just didn't have the energy to do it anymore.

2. How long did you wait between the ileo and j-pouch surgery?
 
My surgeon does his steps in six week increments although mine was at 8 weeks as he was on vacation.  I was very ready at six weeks though to have the reversal.  The first surgery involves removing the colon and rectum and builds the jpouch.  The reversal surgery only involves closing the ileostomy.

3. How long after your j-pouch surgery were you able to return (or start) a completely normal life?
 
I spent 7 days in the hospital after step 1.  I returned home only to start driving again immediately.  My surgeon is a big believer in exercise (as am I) and makes all his patients walk one full mile in the hospital before they are allowed to check out.  I kept up this regime after going home.  I went back to work full time 3 weeks to the day from surgery but most people stay home six weeks.   I was back to hiking short distances 1-2 miles after being home for 4 weeks.  
 
4. How painful were the surgeries and how long were you in the hospital after each one?
 
I won't lie, the first surgery is incredibly painful, all abdominal surgery is.  But the pain is managed and is probably the worse the first 12 hours after surgery.  I stopped taking morphine after 12 hours and only took an occasional vicodin.  I think I have a relatively high level of pain tolerance but a very low tolerance to misery hence my decision to have surgery.  Again 7 days in the hospital after step 1 and 5 days in the hospital after step 2.  I needed no drugs for step 2, it was completely painless for me.


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

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