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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/24/2008 10:32 AM (GMT -7)   
just a few questions if you don't mind........I know my situation would be different from yours but 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?
 
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!
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 6/24/2008 2:46 PM (GMT -7)   
cough!

good questions Beth.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/24/2008 2:48 PM (GMT -7)   
Awesome questions Beth...I would really to know the answers to those!
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 (1st infusion 06/08), 2.4 g Lialda


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/24/2008 6:26 PM (GMT -7)   
I have one more question: How long was it until you were absolutely fully recovered?
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 (1st infusion 06/08), 2.4 g Lialda


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/25/2008 6:03 AM (GMT -7)   
bump
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!
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/25/2008 9:27 AM (GMT -7)   
Bump :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 6/25/2008 1:52 PM (GMT -7)   
cough!
 
tongue
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/26/2008 2:53 PM (GMT -7)   
Buuuuuuuump! :D
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 (1st infusion 06/08), 2.4 g Lialda


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/30/2008 9:30 AM (GMT -7)   
bump.
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!
 


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/30/2008 2:53 PM (GMT -7)   
Hi,

We are so sorry that somehow we didn't see this post, our apologies for the delayed response! Don't know how it was missed.

1. how many bm's do you have a day?
It varies and to be honest I don't really count a daily amount because now its just normal, but I average about 4-6 in the waking hours, and 1-2 per night. As I say it does vary depending on my diet, if I take my imodium and metamucil on a schedule (which I forget a lot), if I have a drink that night. The nightime stuff is very consistent though and its always at 2am. My pouch is 1 year old, but I've only been using it for stool for about 6 months, it is said that at 1 year you start to decrease a little in BMs as your pouch expands

2. how long can you hold a bm in for if not near a bathroom?
I have zero continence issues - and it seems that I can hold it comfortably for about 2 hours. I've not pushed it any longer than that. I try to hold it when I feel some pressure to help the pouch expand. I rarely have to go when I'm out, and I've never had to rush to a bathroom. It is more planning when to use the 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?)
This is a complex question, but both my hospital stays were 5 days. And I had a 2 hour drive home and that was fine. After surgery 1 I was home about 2 days before I started doing small errands outs, and my first ostomy emptying was in a public restroom after 2 weeks. And after my "takedown" when I started using my jpouch I was up and running on about day 3 in the hospital. When I got home, it was half days feeling normal, half day feeling like in recovery. I never felt that I had "make it to a bathroom" it was all very natural and easy transition to make. In the beginning I was empyting when I felt pressure where now I'm used to the pouch so I let it go longer.

4. do you still need to know where bathrooms are when you go places?
NO, NO, NO, NO, NO, NO and can we get a Whoop Whoop from the crowd! My life DOES NOT revolve around bathrooms anymore.

5. have you had any complications that are affecting you currently?
No, not really. Silly things for us have happened like we are really bad at "living normal" - meaning we realized how small our UC world had become, no eating out, fewer friends. that has been a hard transition in all its good parts is learning how "live" again. Physcial complications, I haven't had any jpouch complictions, a few small blockages when I had the temp ileo.


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?
This is the only thing that I wish had changed but I still have exploda' butt sound most the time, especially when I have gas. Gas is something that I have to manage with diet, etc..more gas I have some discomfort and the noises are much louder. This is the one thing that still is somewhat like UC days, but of course now, it doesn't hurt and it doesn't smell like UC did, especially b/c there isn't any blood smell. It is funny though now that the noise doesnt bother me or my family b/c we know it is a healthy noise, whereas the UC noise was so hard b/c it was a reminder that I was sick.


Good Q & A, anything else you need to know? Again sorry about missing this post earlier!

Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/30/2008 3:01 PM (GMT -7)   
How long till fully recovered asks Comedy Dork. Well, I like to say look at the days, weeks with the photos on the blog and this will give you good detail about being back to work http://ucstory.wordpress.com/surgery-1/ But I felt good after my surgery at about 5 weeks I started feeling healthy, strong, but still felt tired at the end of the day or after the week - and it was a feeling of still "recovering". Hard to explain but I felt healthy, but not fully strong (so I felt that was "recovery"). After the jpouch takedown it was only a few weeks and I was feeling INCREDIBLE. I would say though for about the first 6-8 months, there were times when I felt the "recovery" with just some fatigue or lack of stamina.

BUT, the important BUT is that I didn't feel sick anymore, there is a good healthy difference between feeling like in recovery and feeling UC flu sick. I felt that my "down times' from the surgery were a lot less than I expected and had planned time off of work for, etc...But also, we were prepared physically, mentally, emotionally and financially for what "down time" might be need if there was complication. I think it is a big deal to plan your recovery so that it can be as low stress as possible, I mean in reality it took us almost a year to plan our life around the surgery between our jobs, etc...we really made it work for us (took time to recovery at a cabin, etc...). All those little things add up to making it less surgery like and more like moving on with your life.

mark
http://ucstory.wordpress.com

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/1/2008 7:06 AM (GMT -7)   
thanks for your reply, I really appreciate it!
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!
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/1/2008 10:44 AM (GMT -7)   
Thanks for answering, Mark!
 
I have one more questions for you:
If I recall correctly, you were on Humira before surgery. How long was the time between your last Humira injection and your first surgery?
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
*exploring the option of surgery
 


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/1/2008 12:59 PM (GMT -7)   
Hi,

I was on Humira for a 3 month trial after Remicade, and was in surgery 1 month after we knew Humira wasn't working. The story is kinda complex but here are the details:

My GI and I agreed to try Humira for 3 months (that was what she said was the time frame to know if Humira was working or not). I went on Humira, and became much sicker than when I was on Remicade (which wasn't really working but better than nothing), and Humira was NOTHING, so went went back on Pred. to help the Humira, kept getting sicker, and so she took me off Humira (since I was paying out of pocket at that time not approved for UC use), and got me into surgery in 1 month. They wanted to get me in before I kept getting sicker, and wanted me off pred. to do less tissue damage if possible. I had to stay on pred. that month b/c without it I couldn't function.

Mark
Mark & Megan
7 yrs UC to 1 year J-Pouch
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!

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