Home from surgery

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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/11/2008 8:02 PM (GMT -6)   
Finally, after 3 weeks and 1 day (22 days) in the hospital after surgery I am back home. If you missed my adventures in the hospital you can read about it at:
 
 
I was allowed to go home any time after lunch. This morning I saw the surgeon and she said my outputs are still high but because it is thickening up quite a bit I should be fine. She suggested that my outputs might be high because of my stoma being quite high on my stomach. Because of this she wants to do the reversal sooner rather than later. I have an appointment with her in 3 weeks and she will give me a date at that time.
 
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 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 11/11/2008 8:52 PM (GMT -6)   
Welcome home Paul. You sure have been through alot in the past 3 weeks. Hope everything is well with you.
take care and keep us posted
Janice
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 11/11/2008 9:22 PM (GMT -6)   
It's only gonna get better from here : )
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
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!!!


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 11/11/2008 10:18 PM (GMT -6)   
So glad you are home, Paul. There is nothing like home to help speed the healing. Hoping you have only happy, healthy days ahead.
--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/11/2008 10:56 PM (GMT -6)   
I followed your posts and admire your courage. Wow, the toughest part is over I suspect... I fully expect to go through all this in due course and I wish you the fastest recovery to a much happier, healthier and fuller life now. All the best!
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 mg pred, 100 mg Imuran
Probiotics (Primal Defense and others), TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Socalsd
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 11/11/2008 11:39 PM (GMT -6)   
Continued success in your recovery. I am sure you are glad to be home. I was in the hospital 19 days with a bad flare and C-Diff infection a few months ago once I got home it was such a relief. Good luck and keep updating us on your progress. Have you lost much weight? That is my fear with the surgery.
Prednisone 20mg a day
Remicaid (3 treatments so far)
VSL-DS#3
Vitamin C, Omega 3 and Slow Fe (Iron)


34 year old male Southern California


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/12/2008 12:45 AM (GMT -6)   
Thanks everyone, tonight I will be going to bed in my own bed for the first time in a long time. I will have to get used to it again because it is a flat bed, unlike the hospital bed that can be adjusted many different ways.

I lost 30 lbs since surgery. I’m not too worried about it because I was over weight anyway. I am now 200 lbs.
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 : 30986
   Posted 11/12/2008 2:09 AM (GMT -6)   
Hey Paul...awesome to hear you're at home. Hopefully all adjustments will come quickly at home.

How long does one normally wait for the reversal to be done..and how much before that would be sooner for you?

Hope you have a comfortable recovery from now on.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec 2 or 3  +   1 or 2 Primadophilus Reuteri Pearls @ bedtime
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 11/12/2008 7:30 AM (GMT -6)   
Awesome to hear Paul! I always love coming home to sleep in my own bed but I imagine it will be so much nicer especially after a hospital stay! Happy healing to you :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, Osteoarthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Gigi1227
Regular Member


Date Joined Aug 2008
Total Posts : 469
   Posted 11/12/2008 8:19 AM (GMT -6)   
I hope each day gets better and better for you! Welcome home!

Gigi1227
Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
 
Canasa 2x a day
Asacol
Multi Enzyme
Mega Probiotic
Psyllium
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin
B12
 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/12/2008 9:25 AM (GMT -6)   
Paul, thanks for keeping us updated through all of your surgery; it helps so many of us. You've been through so much, and I hope that you keep on movin' right along to a new healthy lifestyle. Oh hey....welcome home! :-)

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/12/2008 10:12 AM (GMT -6)   
Paul,

Congratulations on finally going home! You will probably be happy to have the reversal surgery sooner rather than later. If you are like most of us who had a temp ostomy they can be difficult to manage and we weren't sorry to see them go. Don't worry about pushing the date up, many have had to revise their take-down dates.

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


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/12/2008 10:33 AM (GMT -6)   
Thanks everyone,

It was nice sleeping in my own bed but it will take a few nights getting use to lying flat on my back again.

Normally the reversal surgery is done about 3 months after the original surgery. My surgeon would like to move up the reversal to about 2 months instead of 3. I have an appointment with her in 3 weeks and she wants an x-ray to check on how well the pouch is healing before choosing a reversal date.

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 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 11/12/2008 10:47 AM (GMT -6)   
Well, I suppose it would be good to get the reversal done sooner than later. Are you still eating a soft diet?

Carol

Remicade - will have my 25th infusion on November 26 
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 11/12/2008 11:04 AM (GMT -6)   
I'm so glad that you're home! It's probably a good thing that you're getting a reversal sooner rather than later.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 11/12/2008 9:50 PM (GMT -6)   
Hurray!!!!!!!!!! So happy to read that you made it home, Paul, safe & sane-- right? Consider yourself resilient ... / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 11/13/2008 12:51 AM (GMT -6)   
Thanks everyone,

Carol, for nearly the first week after surgery I was on IV only. Then I was on liquids only for 2 days. I then started solid foods. Before I left the hospital the dietician came and talked to me about my diet up until 6 weeks after surgery. He gave me a sheet with a list of foods I can and cannot eat. I am allowed most things except fresh fruits and vegetables. No skins, seeds or nuts allowed. I am to limit drinks with caffeine or sodas to 3 cups a day (they haven’t seen the size of my cup, I know, they mean 8 oz cups). No chocolate with caffeine. Bananas are allowed and most meats. He recommended I limit my beef to small portions. Vegetables are allowed if they are cook to a very soft consistency. Most canned foods and soups are allowed except corn. No corn products of any kind. White bread only and orange juice with no pulp is allowed. I am to drink 2 liters of fluid per day with 1 liter being plain water only. Fish with no bones is allowed. After 6 weeks my diet is wide open.

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 11/13/2008 1:32 AM (GMT -6)   
really glad to hear that u r home. best wishes and thanls for taking the time and making the effort of keeping us uptodate.
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 11/13/2008 1:46 AM (GMT -6)   
There's just no place like home eh...so glad things went well, here's wishing you a speedy recovery and best wishes for all to go well in the future with your reversal as well.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 11/13/2008 8:27 AM (GMT -6)   
     Just a question Paul.  Would you do it over?  I saw a colorectal surgeon a few months ago and he said I wasn't a candidate for surgery just yet.  At the time I was very sick and wondered just how sick you have to be to have the surgery.  Now I am in remission for a few weeks and keeping my fingers crossed I don't have a  relapse...again.
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 11/14/2008 12:36 AM (GMT -6)   
Would I do it over? It is too early to answer that question. I am still healing and have a second surgery to go through. This is major surgery and shouldn’t be taken lightly. My UC symptoms weren’t as bad as many I have read about and I struggled with the decision. My arthritis was starting to be a bigger problem than my UC symptoms and that helped me with my decision. The final factor in choosing surgery is what my surgeon said to me. She said that because no medications or treatments work for me that I will probably end up with surgery at some point. I figured sooner would be better than later. I can tell that my arthritis is almost gone.

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 


Knight
Regular Member


Date Joined Jan 2005
Total Posts : 352
   Posted 11/14/2008 1:25 AM (GMT -6)   
Paul,
 
Good news.  Congrats.  Curious about the arthritis comment.  Did you say you notice a difference with the arthritis after surgery?  That's new to me.  Would you please expand on that a little?  Thanks.
And nice photos too.  Very cool.
Knight
 
Mild to Moderate Left Side UC since 10/2002, Joint Pain since 10/2004
 
Strict SCD 7/2004-12/2005
Prednisone 8/2004-10/2004
Remission since 9/2004
Daily Meds:
 1500 mg Pentasa, 150 mg Zoloft, 30 mg Baclofen, 10 mg Ambien


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 11/14/2008 3:14 PM (GMT -6)   
     Okay, thanks Paul.  I hope you continue to improve.  You do have a long road ahead of you.  I believe the colorectal surgeon felt that I wasn't a candidate because my UC is located in my rectum and is easier to treat than if I had it through my entire colon.  However, when in a flare, it makes me feel just miserable.  In addition, I ain't no youngster.....so, surgery, especially this sort with three parts and all, is very risky.

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.


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 11/14/2008 9:41 PM (GMT -6)   
Wish you happiness and some good, restful night's sleep. Your body has been thru alot. Take care of yourself and know that you are being thought of kindly!
Share as you can, Kathy
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers, four x this yr. Low residue diet still, and still having problems.
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
On 2nd infusion of Remicade, and still on all of the other drugs., except Flagyl and Pred. Better, not healed.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/15/2008 6:32 AM (GMT -6)   
So happy to hear you're home! If you have any questions about ostomy care, just pop on over on the Ostomies forum, and we'll take care of ya!

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

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