I AM HAVING SURGERY!!! There is an end in sight!

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/12/2010 10:00 AM (GMT -6)   
Hi Everyone!
It looks like there is finally a light at the end of this horrible tunnel. I had my colonoscopy yesterday and my GI said I've never looked worse--my colon is completely filled with deep ulcers and my colon and rectum need to be removed, hopefully within the week! WITHIN THE WEEK!! WAHOO!! smile Finally someone is doing something about this!
 
He set me up with a surgeon who has experience with Crohn's/Ulcerative Colitis (he is still, after 10 years, not sure which I have...lame) and who does things laproscopically (easier recovery! Yay!). The situation is so dire that the actual SURGEON called me last night and set up a consult on Monday. I'm so thankful that everyone is working to get me better. Now we just have to decide if it's a j-pouch (I'm hoping not since we don't know if I have Crohn's or not, plus I just want an ostomy) or an ostomy. I have a CT scan with contrast on Tuesday...ugh, and then we can do the surgery. Hopefully by the end of next week. I wish it was surgery day NOW!
 
Anyway, I am so very thankful to finally have an answer. I only have to last another week in this agony of 25+ bms a day and no eating and dehydration...then it will be hard but will only get better.
 
Thank you all SO MUCH for your help and support; I couldn't have gotten through this without you.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/12/2010 10:37 AM (GMT -6)   
Well, soon you will be feeling 100% better!

Just remember, the surgery choice is yours. If you want a permanent ileo then make that clear. It's not up to the surgeon to decide unless you wanted a jpouch and he/she didn't think it was viable in your case. Since you have your mind made up this should be communicated.

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


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/12/2010 10:58 AM (GMT -6)   
You certainly have the right attitude! You need that. Had my colectomy 2 1/2 years ago at 63. Had the option of Remicade. Said no, just take it out so I can be done with colitis. Good decision for me and it will be for you too.

Congratulations

Dan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/12/2010 11:17 AM (GMT -6)   
I am sooo happy for you! YAY!!!
LIke suebear said, make sure you tell him you dont want a jpouch!

I had to giggle a bit though, becuase i have never seen anyone end a sentence about having deep ulcers in their colon, with a wahoo and a smilie!
although i totally understand why!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/12/2010 11:39 AM (GMT -6)   
LOL Summerstorm, yeah, that probably came across kind of silly :) But my scopes usually don't show much so I was scared it wouldn't this time either.

Polishdan, that's definitely where I'm at--done with meds, done with spending money on them, done with hoping they work and being disappointed when they don't, done with alternative eating plans, etc. ENOUGH already. I want to get back to living my life. I'm sick of feeling like the victim of an illness. I want to take control of things.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/12/2010 12:22 PM (GMT -6)   
*big HUGE hugs to 80sChick*!!!!!!! Im so happy that you stuck to your guns! As summerstom and sue pointed out, the ultimate decision in this is yours. YOU tell the surgeon which way you prefer. Just think...in 2 months time (seem's like a long time, but its not) you'll be healthy and healed and will wonder "why didn't I do this sooner??" *big hugs again*

-Allie
www.oscartheostomy.blogspot.com
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/12/2010 12:58 PM (GMT -6)   
ditto on the communication of what YOU WANT yeah

I am happy for you and you are surely going into this with a GREAT attitude smilewinkgrin
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/12/2010 1:09 PM (GMT -6)   
OHIO, I'm trying very hard to be positive...I know there will be hard days ahead adjusting to an ostomy (and yes, I'm nervous about some of the less pretty aspects) but I want very much to remember that it's for the best and I will have a much better life because of it.

I've already decided I think I want to get a tattoo on the opposite side of my ostomy that has some sort of inspirational quote on it to remind myself what the ostomy has given me. I'm totally a person that never thought they'd get a tattoo, but I also didn't think I'd ever have an ostomy!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 40mg Prednisone (Been on it since June '09...get me off!!), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/12/2010 1:33 PM (GMT -6)   
I'm glad you are moving forward and on your way to feeling better soon!
26 year old female
Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
4/10 Going to try to go back to the J-Pouch again
Imodium (8/day), Questran (3/day), TPN 12 hours/day, IV fluids 4 hours/day


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/12/2010 4:54 PM (GMT -6)   
80sChick
     Gosh I am so happy for you.  All of our thoughts and prayers are with you.....go get um girl...Leslieyeah
Leslie King


killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 3/12/2010 7:51 PM (GMT -6)   
great news! sending you good healing vibes.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/12/2010 8:14 PM (GMT -6)   

YAY!!!!  smilewinkgrin   Isn't is a wonderful feeling just to know that all that pain and discomfort is actually going to be gone!?!

I am so so so happy for you!!!!

smurf 


: )  Robin
 
29 year old Mommy of an amazing 2 year old and Wife for 3 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/13/2010 6:47 PM (GMT -6)   
Stephanie,
I'm so happy for you!! You're gonna kick that disease in the butt (no pun intended blush) and get your healthy life back. There's nothing you can't do with an ostomy (well, except, wear a bikini wink), but there sure are a lot of things you can't do when you're sick and running to the bathroom 25+ times a day! I've been there, and that's no way to live. Everything's gonna go great, and we're here to help you every step of the way. Wahoo for you! smilewinkgrin
Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 3/13/2010 9:29 PM (GMT -6)   
Hey Stephanie I also want to send my best wishes to you and so happy u also will be joining the ranks of feeling better :-), I am a crohns/colitis sufferer as well and have an ileostomy with proctocolectomy as I was told a J-Pouch wasn't an option, But anyway it has given me my life back and so glad to have had the surgery as I know u will be too. Good luck and keep us posted.
Big ((((((((HUGS))))))) going your way

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/15/2010 11:04 AM (GMT -6)   
You will not believe how wonderful you will feel with that %^*&$%!! colon gone. It was like magic when my son had his removed. I truly believe he had forgotten what is was like to feel good!

Congratulations!

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/15/2010 1:56 PM (GMT -6)   
Collicat
that is a very true statement...I felt better when I came out of recovery...colon gone and so is all the misery...so thankful...Leslie
Leslie King


Tiggy3
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 3/15/2010 2:21 PM (GMT -6)   
W00T!

This will be the beginning of a whole new life for you, trust me. By this time next year you will probably be eating all the foods you've missed out on while being sick, enjoying life and just not focusing on your broken bowels so much!

I am very happy for you! ^_^

Please let us know how it all turns out. You've got a tough recovery ahead, but it'll be cake compared to the crap you've had to go through with crohns/colitis.
 
Cheers!!!

Tiggy

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/15/2010 3:00 PM (GMT -6)   
Tiggy  From your lips to God's ears....I know its going to happen I already am eating most everything I want, have not tried raw vegies yet, and try not to eat things that will give me extra gas at this point.
 
But I feel as though I have been blessed to find a surgeon that finally listened to me and who has given me my life back.  It's just so sad how much suffering one has to go through before finally getting help.
 
Bless you and thank you for all your words of encouragement, thank you from the bottom of my heart.
 
Leslieyeah
Leslie King

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