Finally back to work

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/13/2009 6:42 PM (GMT -6)   
As many of you know I had my first J-pouch surgery last October 20 and the second and final surgery January 21. I did not go back to work between surgeries. Tomorrow I finally go back and I will be starting with half days for the next 2 weeks before going back full time. It has been about 6 months since I was working. Currently I’m feeling strong but I still have problems with my bowel movements. I only have 5 or 6 a day but they can be very painful at times. The mornings are best but in the afternoon it feels like razor blades coming out. I will be working from 7:45 am to 11:45 am.


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 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 4/13/2009 7:10 PM (GMT -6)   
Congratulations on getting back to work, and good luck with the recovery!
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine, 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Mesacol/Asacol enema at least once a week
Spinach & sunflower seed diet


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/13/2009 7:25 PM (GMT -6)   
Congratulations Paul.
I followed your story and it is nice to see you getting back to some normalcy. I know you had a rough time after your surgeries.

I finally had my surgery- March 13th- Step 1- colectomy.
I have two more, the last one being the connection of the Jpouch. I will go back to work in two weeks. My next surgery isn't until mid/late June and I had an uneventful recovery (knock on wood). Just starting to feel comfortable with the bag and feeling pretty much pain free.



Has the doctor given you a reason why the bm's are so painful?

Are you taking anything for the pain?

Wishing you the best tomorrow.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone from 40 mg


Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 4/13/2009 8:06 PM (GMT -6)   
Thanks, Paul, for updating us. Best wishes for your re-entry to the workplace! I think it's a good idea that you'll do part-time initially. When is your next post-surgery check-up? I hope your doctor can zero in on your afternoon bm problems with helpful advice. Maybe in the meantime you could post a question about it to other j-pouchers, who may have already dealt with the "razor blade" issue. Hope you get a handle on it soon. / Old Hat (30 yrs with left-sided UC; presently recovering from flare in sigmoid colon)

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/13/2009 8:08 PM (GMT -6)   
Hope that starting work again goes well for you and that the pain issues get 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, 40mg 30mg 20mg 15mg 10mg 10mg of Prednisone every other day, Culturelle probiotic, and Zoloft (25 mg).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/13/2009 8:21 PM (GMT -6)   
Congrats, it must be surreal to be back!
Hopefully soon everything in your life will be a happy routine again, perhaps better than ever!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Flaring, seasonal? Back on prednisone, tried to taper but now back up to 30 after several really bad days. Humira denied, waiting for approval to start Remicade. 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/14/2009 7:59 AM (GMT -6)   
Thanks everyone, I am currently on break at work. This morning I didn’t do much. I spent the time talking with most of my coworkers. I had a little difficulty logging into my computer. I had to call the help desk to have them reset my password. I have over 500 emails waiting for me, mostly company and union news.

I saw the company nurse this morning. She wants me to work half days for the next 2 weeks then ease me into fulltime over the next 2 weeks by having me work full time for 2 days the first week and 3 days the next week. After that I will be working fulltime every day. She wants to see me late next week to reevaluate my situation. We have a first aid room with a bed in it. She said if I need a rest I could use it. They really are trying to accommodate me the best they can. The nurse would like me to see my doctor before I start full time.

As far as my razor blade bowel movements they only started last week. Before that I was having issues with burning skin around my bum. I have been spraying my bum with water after every BM and applying butt cream before and after every BM. I no longer have butt pain on the outside skin but it seemed to have moved inside my anus were I can’t treat it easily. I haven’t spoken to my doctor about it yet but hope to in a week at my next appointment.

Bye for now, I have to read those 500 + emails.

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 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 4/14/2009 8:08 AM (GMT -6)   
Hi Paul
I am delighted to know that you are back to work. I am sure with each day you would gain more happiness and strength.
45 years Male Attorney
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
"Faith is the bird that sings when the dawn is still dark."
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracl: Albert Einstein
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 4/14/2009 10:25 AM (GMT -6)   
Congrats on getting back to work.
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/14/2009 6:49 PM (GMT -6)   
Thanks everyone, when I went home at noon I had lunch then I took a nap before picking up my daughter at the school bus. I think it's going to work out fine.

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 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/14/2009 7:13 PM (GMT -6)   

Paul,

That "crapping razor blades" feeling is most likely fissures.  If you call your surgeon's office you can get an Rx of ointment.  Good to hear you are back to work!

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 : 5182
   Posted 4/14/2009 9:21 PM (GMT -6)   
And with 500 e-mails to read-- LOL. / Old Hat (30 yrs with left-sided UC ... [etc.])

AlliUC
Regular Member


Date Joined Mar 2009
Total Posts : 50
   Posted 4/14/2009 9:24 PM (GMT -6)   
Glad your first day back was successful. Hoping you continue to heal and feel better.
Female, 41
1996 diagnosed proctitis (during pregnancy, just months after I quit smoking)
Mar 3, 2009 diagnosed ulcerative colitis - it got my entire colon - severe

Fighting my first major flare up of UC (but I think my first UC flare up was at the end of 2006, 2 months after I quit smoking again)
60 mg prednisone (started at 30 but was doubled immediately) Mar 5/09
salofalk enemas = 5-aminosalicylic acid (mesalamine) added March 24/09 after second colonoscopy showed not enough progress ( previously managed proctitis with same stuff as suppository and then enema in 06)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 4/15/2009 1:15 PM (GMT -6)   
Paul; great to hear that you are back at work and feeling better enough to do it! I do hope the pain will subside for you; Suebear is right -- maybe get a Rx from your doc to help with the pain. Thanks for all the updates; you are an amazing guy!

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/15/2009 7:19 PM (GMT -6)   
Congrats on going back to work! I hope you're able to figure out what's wrong with your BMs.
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 (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/16/2009 4:24 AM (GMT -6)   
Thanks everyone,

My painful BMs are improving a bit. I have an appointment with my surgeon Tuesday of next week. I’ll see what she has to say.

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 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/16/2009 7:14 AM (GMT -6)   
Thanks for keeping us updated Paul. I'm glad you are finally on the road to recovery and I hope the pain passes soon. Good luck with rest of the week.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/16/2009 10:27 AM (GMT -6)   
Hi Paul....seems there are always a few setbacks for every recovery....I do hope the surgeon is able to find the reason and treat it so that your time back at work can be an easy transition.

Be well....

quincy
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 4/16/2009 4:46 PM (GMT -6)   
     I'll keep praying for your continued improvement in health Paul.  God bless.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/22/2009 4:19 AM (GMT -6)   
Yesterday I saw my surgeon and she inspected my sore bum. She said I have a small fissure. It feels large to me. She gave me a prescription for some cream to put on it 3 times a day. The pharmacy had to mix it. It is 2% Diltiazem powder mixed with Vaseline. It really stings when I apply it. I was told it could take 3 or 4 weeks to see an improvement.
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 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/22/2009 12:32 PM (GMT -6)   
Good thing you saw the doc....hope the medication helps you feel better soon. LOL...feels like a large fissure....I can truly understand that statement.

q
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/22/2009 8:02 PM (GMT -6)   
Thanks Quincy,

I started using the cream on my fissure yesterday and it really stung. I could hardly walk for almost 2 hours. I’m suppose to use it 3 times a day. This morning I didn’t use it because I was afraid I wouldn’t make it to work if I did. When I got to work I called the company nurse and told her my situation. We were originally scheduled to meet tomorrow to discuss my progress. She recommended that I take more time off work to allow my fissure to heal. She said she will call me early next week to see how I’m doing.

Another setback but I’m sure I’ll get through it.
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 : 5182
   Posted 4/22/2009 9:27 PM (GMT -6)   
Gosh! The treatment sounds at least as troublesome as the fissure. Keep your sense of humor going, Paul. Did you ever read Voltaire's Candide, where Dr. Pangloss keeps bragging that he was cured of syphillis at the cost of only one eye + one arm? (Hope you'll be able to heal this nuisance real soon.) But it's great that your nurse at work is so understanding. / Old Hat (30 yrs with left-sided UC ... [etc.])

quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 4/23/2009 12:31 AM (GMT -6)   
Interesting that the med the doc gave you is a calcium channel blocker...vasodilator...but I read how it's used for fissures...very interesting by lowering the pressure in the anus and healing the fissure.

Keep us posted as to how it goes....makes sense for you to heal while at home.

Hope this setback is short-lived.

quincy
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/23/2009 7:39 PM (GMT -6)   
Thanks everyone, my butt is sorer than ever, especially after putting on the cream. I’ve been lying on the couch watching television most of the day. It is getting more bothersome when I walk. I’m lucky to work for a company that really understands medical needs. The nurse has the final say when it comes to health issues. She issues written instructions to my boss and he has to comply. Our group is responsible for a new project at another location about a half hour drive away. I haven’t been there since it started and my boss wanted me to go. I told the nurse that I wasn’t feeling up to going and she mad a restriction that I had to stay at my usual location until I’m back to full time hours.
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 

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