Paul L, are you ready to update us?

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Old Hat
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Date Joined Feb 2007
Total Posts : 5167
   Posted 2/20/2009 11:56 AM (GMT -6)   
Today is about 1 month since your re-connect surgery, right? I'm wondering how you feel-- especially after you posted earlier that you have to climb ladders at work. Best wishes! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/21/2009 5:10 PM (GMT -6)   
Hi Old Hat, I had my reconnect Jan 21, which makes it one month today. When I left the hospital I was told not to lift anything heavier than a phone book for 6 weeks after surgery. I’m feeling fairly strong now and couldn’t help but lift things heavier than that. The last week I was doing some work around the house.

Before my first surgery back in October I was trying to finish the painting of the main floor of our house. I finished most of it except for some of the trim work and doors. At Christmas time I thought I was feeling OK so I tried to paint a small section. It took me a whole day to complete a section that should have taken only 2 hours. I was so exhausted after that that I didn’t do anymore paining until after my second surgery. about a week ago I started painting again and I wasn’t as exhausted this time although I took my time and rested often. Yesterday I finished the trim work and I only have the doors left to do. There are 5 doors to paint. I hope to finish them in about one week.

My biggest problems right now is the frequency of my bowel movements and severe butt burn. A week ago I was waking up at night to go to the washroom 4 or 5 times over night. As a result I stopped eating supper. I don’t eat anything after 2:00 pm. Since I started that I only get up once or not at all. I might even loose a few pounds if I’m lucky. Last week I had a couple of days that my butt burn was so bad that I could hardly walk or sit. I spent those days lying on the couch watching television.

I have an appointment with my surgeon March 3rd. If things are going well at that time I will be going back to work after that.
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 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 2/22/2009 6:06 PM (GMT -6)   
Accomplishing those household jobs really is cool! Now, hopefully, you'll get your pouch to behave better at night. Maybe some longer-time pouchers here could advise you about that. Good luck with the surgeon visit-- that's only about 9 days away. Do the doctors want you to follow up on the sleep apnea study? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/22/2009 7:41 PM (GMT -6)   
Paul you may have a fungus infection..check to see if it's red around that area between your butt cheeks.


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*

Post Edited (bbc) : 2/22/2009 11:37:11 PM (GMT-7)


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/24/2009 5:54 PM (GMT -6)   
Thanks, the problem I have is that I have a lot of gas. When I hold it for about 5 seconds it goes away. It comes back about a half hour after a bowel movement. After that it comes back 15 or 20 minutes and then 5 or 10 minutes. It keeps reducing the time until it is only a few minutes between them and the pressure or urgency also increases until I have another bowel movement. With the butt burn it really hurts when I have the gas pressure. I currently have 8 to 10 BMs per day and with the butt burn I think my condition is no better than it was before surgery. This is a real pain in the butt.

I was warned about this at the hospital and it should take a couple of months to adjust. The nurse at the hospital gave me a water bottle to spray my butt each time and cream to apply. I have been doing this every time and it still isn’t helping much. I doubt I have an infection. There was a resent post about someone else having the same problem after about 3 weeks. I had a similar problem around my stoma when it leaked. The liquid stool can really burn the exterior skin.

I went o my family doctor over a week ago to talk about my sleep apnea. He is referring me to a sleep disorder clinic. I haven’t got the appointment yet but I was told that they would do their own tests on me and I may have to sleep at the clinic for the tests.

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 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 2/24/2009 6:48 PM (GMT -6)   
Suebear recommended Metamucil wafers, oatmeal, rice, & bananas to reduce no. of bms-- in Daylight's thread on j-pouch problems early on. I hope these will help you, too. Sorry to read that you feel like you did before surgery-- definitely a nuisance, to put it politely. Hang in there! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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