I'm UC FREE!!!!

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/18/2009 9:27 PM (GMT -6)   
Hi guys! 
 
I just wanted to give you a little update regarding my past couple weeks without UC.  : )
 
IT'S AWESOME!!!!!!!!!!!!!
 
Prior to surgery I was very limited...in extreme amounts of pain...and failing all medications.  The surgery pain has sucked, but I had a c-section and my proctocolectomy was done laparscopically so the recovery of this is nothing compared to my prior surgery.
 
Anyway, it's been an adjustment have an ileostomy, but to be honest, it's welcomed b/c I don't have UC anymore.  : )  I don't feel the pain...I don't have issues with running to the bathroom...I'm not bleeding anymore.  I mean sure, my bootie is a little sore b/c it's ALL gone, but nothing...NOTHING...has made me feel this good in the past two years.  I had UC for less than two years actually...and that was enough.  It was like a vicious monster that set it's sites on me and my immune system and attacked!  I really didn't have much of a break that entire time. 
 
I'm off Asacol (which I was taking 2400mg twice a day) and no longer needing Remicade (yea!), and was on 40mg of prednisone for almost that entire time and am now down to 5mg and will be completely off by the start of next week!  My prilosec will be once a day after the prednisone has stopped, and it's all just been so amazing!
 
I realize that many of you are finding relief and positive change with diets, nutritional changes, different forms of treatments and suppliments, but none of that would have made any difference to me b/c of the severity of my UC.  I have learned on this forum that UC comes in so many different steps and stages.  Mine just happened to be big and bad and I didn't want to allow it control any more.  : )
 
So, anyway, prior to my surgery I was scared and upset with the fact that I had UC and that it wasn't reacting to any of our treatments.  I was broken hearted and just completely exhausted from it all.  You all helped give me hope and gave me that little extra umph that I needed to make it through the day at times.  My recovery has been up and down (as days when I feel good I want to do things so I'm stupid and make dinner or something and end up spending the next day in bed b/c of the pain *sigh*), and I am just now trying to make more of an effort to get online and share my experiences and catch up with everyone else! 
 
I hope you are all doing well and are remaining to find treatments that work for you!!!
 
Thanks again for all your support and words of encouragement!!!  smurf
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/18/2009 9:41 PM (GMT -6)   
I am so happy for you Robin, you had to compromise (get your colon out) but you have your life back and that's the main thing, you sound so happy with everything including your decision to have the surgery and I'm so glad for you. You have your whole life ahead of you and no more IBD limitations, congratulations!!!

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


emory
Regular Member


Date Joined Aug 2008
Total Posts : 327
   Posted 2/19/2009 12:08 AM (GMT -6)   
Robin, so glad you're feeling great!
41, female
Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
Canasa 1000 mg suppositories and 1 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories (tapering) and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, and Trazodone 75 mg for sleep/anxiety (clonazepam as needed)
2.5 mg methimazole for thyroid
Had some success with acupuncture
Osteopenia and other assorted ailments


Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 2/19/2009 2:25 AM (GMT -6)   
congratulations.
And thanks for the posting!! Nice to know that the worst case outcome isn't necessarily bad at all

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/19/2009 6:22 AM (GMT -6)   
Congrats Robin! I hope the rest of our recovery goes smoothly. But you be careful now - no pushing yourself *tsk tsk tsk* ;0)


 @--->--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
 
 
 
 

 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 2/19/2009 6:42 AM (GMT -6)   
supersaw said...
You said your booty is still sore? And you still take pred? Why?


She said it's sore because it's all gone- when you have the total surgery, they take everything out including the rectum and close you up, so I would imagine it would be a little tender down there for awhile!!

Also, you can't stop taking pred cold turkey, even if you're not at risk of flaring up again, because there are serious (sometimes even life threatening) withdrawal effects if it is not tapered. She said she was on 40mg up to surgery so she'd have to take some time to taper off that.



Anyway, CONGRATS Robyn that's so exciting!! Glad to see you're soo happy with your decision; gives me a little hope for the future :-)
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg
First Remicade infusion 2/5/09


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16285
   Posted 2/19/2009 8:36 AM (GMT -6)   
You sound so happy and hopeful. I am excited to hear everything worked out as planned and you're feeling great. Best of luck in healing.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30597
   Posted 2/19/2009 9:18 AM (GMT -6)   
WooHoo Robyn!!...awesome you're starting to feel so much better. Hope the rest of your recovery goes smoothly.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite..back to nightly (Jan 22)..tapered too fast
~diagnosed January 1989 UC (proctosigmoiditis)
~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 !!!
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/19/2009 9:20 AM (GMT -6)   
Enjoy your new lease on life! cool
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*


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/19/2009 11:31 AM (GMT -6)   
How wonderful!
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; started diet without gluten, soy, dairy, tomato etc. Probiotics (Ultimate Flora, 50 billion). Doing much better, but still having some bad days. 


Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2108
   Posted 2/19/2009 11:37 AM (GMT -6)   
Wow, that is great! Good for you! Maybe you could keep in touch and let us know how you are doing on a long term basis.
ack, 42, Vancouver BC
 
DX: UC (Pancolitis) as of Jan2009.  Symptoms first began June 2008.
Current Meds:  Asacol 800 mg (1 pill x 4 daily), Ferrous Sulfate



glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 2/19/2009 1:04 PM (GMT -6)   
I'm so happy to hear that you're doing well. It must be a relief to be through the surgery and to be on the road to recovery.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
75mg 6-MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 2/19/2009 1:28 PM (GMT -6)   

Robin-

Congratulations! I am so happy for you. It is great to hear that you are doing so well so soon. Glad you didn;t have any complications.

I am still suffering badly and so scared of surgery, so it is good to know things went well for you. Maybe there is hope for me too.

I know you discussed why you chose the permanent ileostomy over jpouch--- any regrets so far?

 

My best...


Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 2/19/2009 4:36 PM (GMT -6)   
Robin, I am very happy for you....it's got me thinking now.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Mesaamaline (sp) Retention Enemas, herbal meds in the search to regain full health.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/19/2009 6:48 PM (GMT -6)   
I'm so glad you're doing well! smilewinkgrin
Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/19/2009 8:07 PM (GMT -6)   
THANKS YOU GUYS!!! : )

I absolutely love that my ileostomy is permanent. I will have no more surgeries and I am starting to speed back up with things and get on with my life! It's wonderful!!!

I spent the day with my husband out of town shopping and just hanging out...LOVED IT!

I was a little nervous about in public with my accessory (that's what I call my ileo) but it worked out well. I emptied it at Sam's Club b/c they have large bathrooms, but really it doesn't matter b/c they have deoterizors and it really makes a huge difference...so really there is no need for me to stress.

I will be honest...having an ileo does take some adjustment...and I was really trying to prepare myself ahead of time by having thoughts of it being on me and just getting myself mentally prepared with research and visual images.

BUT...I will never again have to go poo!!! : ) I will never again need to run to the bathroom with urgency and NEVER be in pain again...well, UC pain that is...it was horrible! I don't want the j-pouch b/c there is no guarantee for 3-4 bm's a day...and there really are higher risks for future surgeries with a j-pouch. And like I said, I don't want anymore hospital stays or future complications if I can help it. The only hospital visits I want is for my future pregnancies, which will not be for a few more years, but that will hopefully be the only times I have to be back in those stuff rooms with those lovely gowns. : )

I do not regret my decision at all and have not regretted it once since the surgery...I was angry with my surgeon for his dumb decisions, but never have I thought this was wrong...I'm healthy again...my body no longer is at war with itself. Words simply cannot describe how extrodinary my life is now.
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/19/2009 8:57 PM (GMT -6)   
Congratulations! It's wonderful to know you are enjoying life again :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission
Asacol 12 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: end of March or early April
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/19/2009 11:05 PM (GMT -6)   
Robin,
I am so very happy for you. Please continue posting and let us know how you are progressing.

Blessings,
Melissa
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


basa0806
Veteran Member


Date Joined Feb 2005
Total Posts : 2103
   Posted 2/19/2009 11:31 PM (GMT -6)   
You lucky girl! I'm very happy for you! :)
Sam(antha)
20 year old college student diagnosed with ulcerative colitis at 16
Remission since January/April 2006
400mg Asacol 2x, 10mg Elavil, 75mg Effexor XR for GAD

"Life is what happens when you are busy making other plans"
John Lennon


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/20/2009 12:18 AM (GMT -6)   
RobinByrd said...
THANKS YOU GUYS!!! : )

I absolutely love that my ileostomy is permanent. I will have no more surgeries and I am starting to speed back up with things and get on with my life! It's wonderful!!!

I spent the day with my husband out of town shopping and just hanging out...LOVED IT!

I was a little nervous about in public with my accessory (that's what I call my ileo) but it worked out well. I emptied it at Sam's Club b/c they have large bathrooms, but really it doesn't matter b/c they have deoterizors and it really makes a huge difference...so really there is no need for me to stress.

I will be honest...having an ileo does take some adjustment...and I was really trying to prepare myself ahead of time by having thoughts of it being on me and just getting myself mentally prepared with research and visual images.

BUT...I will never again have to go poo!!! : ) I will never again need to run to the bathroom with urgency and NEVER be in pain again...well, UC pain that is...it was horrible! I don't want the j-pouch b/c there is no guarantee for 3-4 bm's a day...and there really are higher risks for future surgeries with a j-pouch. And like I said, I don't want anymore hospital stays or future complications if I can help it. The only hospital visits I want is for my future pregnancies, which will not be for a few more years, but that will hopefully be the only times I have to be back in those stuff rooms with those lovely gowns. : )

I do not regret my decision at all and have not regretted it once since the surgery...I was angry with my surgeon for his dumb decisions, but never have I thought this was wrong...I'm healthy again...my body no longer is at war with itself. Words simply cannot describe how extrodinary my life is now.
 
Kinda says it all doesn't it :-)


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*


ucisapain
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/20/2009 3:07 AM (GMT -6)   
Thank you for sharing your story. I've had UC for 2 years (diagnosed in Feb 07) and have had several flareups, treatable only with Pred which I refuse to take anymore. I've been taking rectal Colifoam and Salofalk granules but this hasn't been successful. I tried Imuran which made me so sick I thought I'd never stop vomiting. I've reached the conclusion that surgery may be my only hope.

Your story gives me hope and I really appreciate it. I hope all goes well for you and I look forward to hearing more about your post UC journey.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/20/2009 1:08 PM (GMT -6)   
You know...for those of you pondering surgery it really is a huge decision. Mine was easy because UC was just becoming too much of an inconvenience for me and I was suffering day in and day out. I am a control freak and UC started taking control away from me and making me live my life around it's demands. That was definitely not okay with me. I also have a 13 month old and he needs me to be the best I can be, and I just haven't been able to be there 100% of the time b/c of runs to the bathroom or pains that inhibited my ability to pick him up or hold him.

I would suggest making a list of the pros and cons the surgery would have on your life. I started a 911 Card, which I ended up not needing after all, but it had a list of the reasons why the surgery needed to happen and then a list of all my supports with their phone numbers. My pros for the surgery had at least 20 reasons, and I know that if I got more detailed it would have been close to 100. : ) I had some fears prior to the surgery, but once I got home I started to adjust fairly quickly. The first week was rough, but really I am just so appreciative to be healthy again! The ileostomy is such a small price to pay in getting my life back and no longer having to feel that UC pain...it is definitely a welcomed accessory!!!

So, if surgery is looking like a possibility in your future please know that it's really not that big of a deal once the surgery is past and your on the road to healing! Also, once you're UC free it is AMAZING!!!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 2/20/2009 2:00 PM (GMT -6)   
     That's wonderful Robin!  Very happy for you!  Could you mention where the surgery was performed?  Now don't say your colon..we know that.
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.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/20/2009 7:57 PM (GMT -6)   
I had my surgery in Columbia, Missouri...I would not recommend my surgeon, as he is now dubbed Dr. Ass----. : ) However, I asked about surgeons in Missouri on j-pouch.com and a gentleman told me about a woman doctor in Kansas City who was really wonderful and had great bedside manner. My doctor is a shmuck. I told him so yesterday at my first follow-up appointment. I'm hesitant to go to my second but my family is on me to be responsible...even if it is with an ass. : )

Many people travel to Chicago for their surgery and there are a few other locations that get rave reviews. I know the Mayo Clinic is wonderful as well. My great-uncle is a retired surgeon who specialized in abdominal surgeries and he was going to get me in with his partner, but if I followed through with the surgeon in Columbia then my surgery would have been sooner...and at the time I liked my surgeon...his incompitence became known only after my surgery (which he did do a good job with)...it's just his pain management practices that suck.

Anyway, today was the first day I've taken one or two vicadin. And today it's been two weeks since my surgey! : ) Whoo-hoo!!!

Today I've ate jumbo smarties and mustard!!! Not together. : ) I eat sour cream almost every day b/c I can! I had syrup with my breakfast and no trouble!!! I also went out for breakfast with my husband. We ran an errand afterward and not once did I think about a bathroom. It makes me emotional thinking about it. My outings are not controlled by the colitis. I didn't stress or sweat b/c of cramping and severe abdominal pain. I 'enjoyed' the time with my DH and was able to focus on him 100%. Do know how wonderful that feels? You guys, having this surgery has given me back far more than I ever knew I had lost. I hadn't realized my focus was not fully on those around me...until now. I find myself being more attentive to my loved ones and able to make dinner dates without a thought. It's unbelievable. I am looking forward to our dinner date with some friends tomorrow night...and we're going to 'their' house! All I need to do is pack my needs for my accessory and I'm good to go! I mean...serioiusly...I ate MUSTARD people!!!

: ) Okay...I'm done bragging. : ) It's just so amazing because every day I'm learning new perks to having a total colectomy. *happy sigh*

I really do not want to offend anyone, and I'm not trying to push anyone to surgery. But please know that there is a life...an amazing life...afterward, and there is always 'hope'! I hadn't realize I had lost my hope until we decided on the surgery and it was scheduled. : ) My hope was renewed and even through all my fears and apprehensions...I knew my fight with UC was over.

You are all in my thoughts...and please email me if you want to speak privately about the surgery or any questions or apprehensions you may have.
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/20/2009 9:16 PM (GMT -6)   
Robin,

What did dr asspipe smilewinkgrin say when you told him exactly how you felt?


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) : 2/20/2009 8:23:58 PM (GMT-7)

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