Saw my surgeon last week

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/11/2009 10:59 PM (GMT -6)   

As most of you know I had my first J-pouch surgery last October 20 and my reversal January 21. I am still on sick leave and haven’t been to work since last October. Last week I had my first appointment with my surgeon since my second surgery. I told her that I was having 8 to 10 BMs per day with extreme butt burn. My BMs were very liquidly. I had stopped eating after lunch because I was getting up 4 or 5 times per night to go to the washroom. That reduced it to about once overnight. The surgeon didn’t like that idea. She gave me some diet suggestions and a prescription for Lomotil.

 

I asked her when I could go back to work and she said in a couple of months. I was surprised and told her I was hoping for a couple of weeks. The thing that is stopping me is the but burn. The frequency is not that big of deal because I managed the same amount for over 3 years without missing much work. Since that appointment I have seen some improvements. I am now eating dinner and only waking up once over night. My BMs have started to thicken up and I only have 6 or 7 BMs per day. I still have butt burn but it isn’t quite as bad. If things keep improving I should be going to work soon.

 

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 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/11/2009 11:12 PM (GMT -6)   
Very interesting, Paul. I didn't know you could reverse it. What made you decide?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 3/11/2009 11:26 PM (GMT -6)   
I think you're well on your way to getting a life back.
UC diagnosed in 1987.
 
 Was returned a life with Colectomy and J-pouch surgery 9/2001
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/12/2009 7:27 AM (GMT -6)   
subdued said...
Very interesting, Paul. I didn't know you could reverse it. What made you decide?

The reversal refers to the temporary ostomy. It was removed and the intestines were reconnected. The J-pouch then becomes functional.
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 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/12/2009 8:31 AM (GMT -6)   
Paul,

There are some things you can do to reduce your frequency and reduce the burn. Are you taking imodium or lomotil? Have you tried eating metamucil wafers before meals to bind the liquids? Are you staying away from sugar and carbonated beverages? Friendly foods in the early months of recovery are rice, oatmeal, pasta, bananas. A great ointment of butt burn is calmposeptine, your pharmacist can order it. I encourage you to visit www.j-pouch.org for more ideas. I think you could return to work sooner if you got a handle on some of these issues. I was only out of work for 3 weeks post surgery and found returning to work distracted me from my butt!

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


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 3/12/2009 10:30 AM (GMT -6)   
Thanks for updating us, Paul. It sounds like the surgeon took your issues seriously, but she should realize that patients' sick leave from work does not last indefinitely! I would try Suebear's diet recommendations in the meantime. Though many UCers posting here claim that diet does not make any difference to their symptoms, I've always found some foods more tolerable to the gut than others-- so I'd say it's definitely worth an effort to identify items that help reduce your bms daily & include them regularly in your meals. Hang in there! You're just about over the last hurdle in the UC competition. (Plus-- spring is coming!!!!) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/12/2009 10:38 AM (GMT -6)   
Glad to hear that you're improving! Hope it keeps getting better and better.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/13/2009 11:32 AM (GMT -6)   
Thanks everyone. I wasn’t able to respond last night because we picked up our brand new SUV and I spent the night reading the manual about all the features. It’s almost more programmable than my computer LOL. I finally have a vehicle to take me to work when I go back. My wife was in an accident a few days before Christmas and her car was totaled.

I just started Lomotil last week. I was on it before my last surgery but was told to stop it until I see the surgeon for the first time after leaving the hospital. Yes I did try most of your diet suggestions but it seems to take a long time to make any difference if at all. I Have tried 3 different ointments and I’m using the one that I feel works best. I do read www.j-pouch.org once in I while. I haven’t posted there in a long time. I just don’t like how the forum is laid out. Things have definitely improved in the last week and I think my quality of life has finally equaled my pre surgery condition. I should be going back to work in a week or two.

Sue I am always amazed when you say you went to work 3 weeks after surgery. I was still in the hospital after 3 weeks. Even after I went home I couldn’t stand or walk for more than 10 minutes without breaking out in sweat and becoming totally exhausted. It took me over 2 months after surgery to get my strength back. At last weeks appointment I met my first hospital roommate. He seemed to be doing better than me. He had his first surgery 2 weeks before me and his second 2 weeks after me. He has been back to work for a week when I saw him last week. It’s amazing how everyone is different.

Luckily I have a good sick leave plan. Over the past 18 years of employment with the same company I have accumulated about 6 months of 100% pay followed by 6 months of 75% pay then LTD at 66% pay indefinitely.

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 : 5190
   Posted 3/18/2009 8:33 PM (GMT -6)   
Wow! That's a really impressive disability plan. All together I think you got good breaks when you needed them, between the insurance & your surgeon & employer. Not like in the U.S. where they want patients to keep costs down by going home from hospital as soon as they can walk to the nurses' station. Good luck with your new SUV! / Old Hat (30 yrs with left-sided UC ... [etc.])
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