Paul L, Bratcat...

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/5/2009 1:48 PM (GMT -6)   
How are you doing?
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/6/2009 12:08 AM (GMT -6)   
Hi ComedyDork and everyone else, Thanks for asking. It has been 11 weeks since my surgery and I feeling a lot better. I’m getting the hang of changing my ostomy bag but I will be happy to get rid of it. My home care nurse was visiting twice a week but has recently changed to once a week. I really can’t stand my ostomy bag. My stoma is located above my belt line next to my belly button. It is difficult to tuck in my shirt and sometimes it hangs out for everyone to see. Last Saturday I went to a wedding and I wrapped my shirt under the bag and tucked it in. It wasn’t bad when the bag was empty but it really bulges out when it started to fill. I kept my suit jacket on to cover the bulge. One problem in doing this is that it reduces the capacity of the bag by half and it must be emptied more often.

Before Christmas I wasn’t feeling well enough to go back to work but now I feel much better. My employer sent me a form to have the doctor fill out so I would continue to receive sick pay. Today I faxed the form to my surgeon. She thinks I should stay off work until after my second and final J-pouch surgery. The date hasn’t been set but it should be the end of January or beginning of February. If I did go back to work I don’t think I could bend down or climb ladders. Some of my work requires this. I would also need some rest in the afternoon. I guess I’ll just stay at home for now.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 1/6/2009 7:41 AM (GMT -6)   
Comedydork
 
i think there were 5 of us who had the first part of the j-pouch op in a 4 week period over Oct/Nov. As well as those previously mentioned, there was also Cher, Nascaron and myself.
 
i have been plodding along, trying to get my boys to do as much as they can to help out. although there hearts are in the right place, they have been allowed to pick up some lazy habits  :(
 
i have been doing ok and have not had any major setbacks. my stoma has been behaving quite well altho recently the area around it has started to get a bit red and raw. i hope to catch up with the stoma nurse soon.
 
i sympathise with Paul's frustration with THE BAG. A couple of times i have been out when it started to fill up and it presents a huge bulge! Fortunately i didn't have to tuck my shirt in. I had a problem when i had my belt on too tight as it irritated the bottom of my incision and i had a bit of seepage from it. if the belt was on too loose then my pants would come down! in the end i started to wear braces again. the last time i wore those was in lower primary school!
 
i am still a bit tired and anaemic but i have recently found an iron tablet which doesn't turn everything black.
 
I am hoping to go back to work next week but i expect that it will be a bit of trial and error. I guess I was worse when i worked full time before the op so i should be able to manage.
 
Hope everyone had a great xmas/new year and apologies for rambling.
 
PF
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
gave up on meds after infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept
 
have temp ileostomy, reversal probably in Mar/Apr 2009.
 
and I don't know where the nearest toilet is!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/6/2009 8:15 AM (GMT -6)   
Ah, I knew there were more that had surgery but couldn't remember names!

I'm glad things are going mostly well. And I'm sorry the bag is so frustrating!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 1/6/2009 12:07 PM (GMT -6)   
Paul, your surgeon sounds like a real human being! cool  That's great when she helps you to get your sick leave extended-- because climbing ladders & bending down a lot is not what you need right now. Then there is also the commute to work in bad weather! So-- you may be getting a bit bored these days, but you should be in stronger shape for the reconnect surgery. Way to go, I think. Hang in there & do keep us posted. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/6/2009 12:21 PM (GMT -6)   
Paul glad to hear you're doing better...that's encouraging for the rest of us. Have you been able to start putting on some weight?


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days

Post Edited (bbc) : 1/6/2009 11:04:53 AM (GMT-7)


bratcat
Regular Member


Date Joined Jan 2007
Total Posts : 74
   Posted 1/6/2009 9:39 PM (GMT -6)   
Hi all!

I am doing very well. I am adjusting well to the JPouch and going to the bathroom again. I am back to my old self running around as always. Between school, work, clubs, an upcoming talent show, scholarship applications and the planning of my Girl Scout Gold Award ceremony I haven't had time to think much about how good I feel.

I have learned what causes me to go to the bathroom more or what I shouldn't eat too much of in one sitting. I also realized I don't know how many times on average I go to the bathroom. I don't think about it because there is no urgency. I see my surgeon again Friday for a check up.

Hope everyone else is well!!
Diagnosed with UC 10/12/06
Daughter of Bennie
17 years old
Flared 3 times in a year and a half tried almost all medicines
Current Meds:None!!
JPouch Step 1 of 2 on July 3


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 1/6/2009 9:53 PM (GMT -6)   
Luckily I have good sick benefits at work. I get 8 days per year at 100% pay and any unused sick leave accumulates each year to a maximum of 6 months before LTD (long term disability) kicks in. I have been with the company for more than 18 years. That means I’m at the maximum of 6 months.

Before surgery I was at 230 lbs. Shortly after surgery I was at 200 lbs. Unfortunately I gained more weight than I wanted. I’m currently at 225 lbs. It must be all that pizza I’m eating.

My 6 year old daughter keeps asking to see my bag. She even wants to know how I empty it. I show her with a new bag.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/7/2009 12:25 AM (GMT -6)   
Hey bratcat so glad to hear you are having a normal life again!
 
PaulL...have a few slices for me!!!


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days

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