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RobinByrd
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Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 2:28 AM (GMT -7)   
My comment...
 
Now that I've scheduled the surgery and had the small bowel series to rule out Crohn's, which it came back negative (but I realize the true diagnosis will come after the surgery and the colon is sliced and spliced for testings), my colon is acting like we're BFFs.  Seriously, I haven't had much urgency since the barium from the test was completely through, and yesterday I had hardly any UC pains.  In fact, I've slept on my side for the past two nights and even fell alseep on my stomach this past evening!!!  What?!!!  I know!!!!  I was so bold as to have ate pizza two nights in a row and I'm not in pain!  So, my crazy colon thinks it can butter me up by acting nice...I feel that b/c it knows it's days are limited it's doing anything in it's power to remain a part of my system.  Well...it's too little too late as far as I'm concerned!  : ) 
 
 
My question...
 
Will you tell me your experience of waking up from the surgery?  What did you feel like being UC free for the first time?  What's it like?  Though I've only been battling this for two years, I forget what it's like to not be struggling physically and emotionally.  Will you tell me your stories?  I just love hearing how wonderful it is for all of you.  : ) 
 
 
 
Thanks!!!
 
: )  Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5696
   Posted 1/25/2009 7:53 AM (GMT -7)   

When you wake up from surgery you will immediately feel that the UC is gone.  Although you will be in discomfort from the surgery you can definitely feel the absence of UC.  For me it was an amazing moment that brought me to tears.  I finally felt like what I feel non-IBD people feel like and that feeling has persisted through the almost 8 years of being UC free.  My surgeon says that all of his patients remark about the feeling right after surgery.

BTW-Once the colon gets the word it's being tossed it gets on its best behavior!  Don't let it fool you.

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


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/25/2009 10:19 AM (GMT -7)   
Barium always calmed my gut down. it's magical, but TEMPORARY!
I had an epidural for my colectomy. If you can get one, DO! I was pretty comfy. And I kept it for a few days! But you'll probably have an NG tube (which I didn't know until I was awake) for a few days too.
I agree with Sue. you just know there is no more sickness. A very reassuring feeling.
At first, I didn't even want to look at my stoma b/c I was afraid of it, but after a few days, it was kind of cool. And it's always interesting to see what is coming out and trying to identify what food it used to be (sometimes it's easy b/c not all digested). I thought that'd be gross, but it's really not bad.

For me one of the best things is the gas issue. I was soo gassy with u/c and I couldn't just pass it, b/c I'd have an accident, so I'd run to the toilet just to fart. And I was always rumbly in my tumbly from it. Painful and it was worse at night. I couldn't sleep on my sides b/c It'd help the gas move through. But now, it just comes out. and my tummy is Usually comfortable, meaning no gas pains! I totally love that. It kind of tickles when it comes out and as wierd as it sounds, i feel more like a normal person b/c of it. B/c I'm not concerned about the gas.

I told my colon to get used to the idea of going away b/c it was FIRED!

Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 11:43 AM (GMT -7)   
well i wish my colon would have behaved a little while before surgery, but it sure didnt.
i will tell you my thought process when i woke up from surgery
this is what went through my head
"OH MY GOD THIS HURTS LIKE A *&(*&(*^*%^%$*&(*)"
"WOW I"M HEALTHY! I FEEL SO MUCH BETTER"
"OH MY GOD THIS HURTS LIKE A *(&(*&(*)*()"
then i looked down and saw the bag on me, remeber i told you it was gonna look really icky at first
"OH MY GOD WHAT DID I DO!!!"
"I FEEL CLEAN, ITS ALL BETTER NOW"
"OH MY GOD THIS HURTS LIKE A *&(*)*)(_)(_"
then a lovely lady with a syringe came by and i remeber nothing!

all of that was in like a 30 second span, lol.
so dont be scared i just wanted to be honest.
that was the first time i woke up in the recovery room, didnt have my glasses on , was all disoriented.
When i woke up in my room and got my glasses and was a little more coherent, i thought, it's over it's over i'm better! and i'm pretty sure i started crying. then i think i went back to sleep, lol.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 1:14 PM (GMT -7)   
Leah,
Thanks for the honesty!!! I do like to hear that...and I'm very honest as well. I tell people that pregnancy isn't for everyone and I didn't like it. : ) I'm looking forward to our next one without Prednisone!!! : )

Anyway, I am just so looking forward to no more colon...no more UC...no more icky feeling all the time.

I figure I'll wig out a little...I mean, seriously, who's really excited about having an organ removed? I am at the moment, but I'm sure that once I see the horrible baggy attached my stomach and feel the pains from surgery I'll have second thoughts. But really, it's all very exciting!!

I also absolutely LOVE that you all felt so good afterward! That you can tell a difference! That's what I'm looking forward to...feeling the absence of UC. It makes me emotional just thinking about it.

Thanks you guys!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


Crohned
Regular Member


Date Joined Jan 2007
Total Posts : 86
   Posted 1/25/2009 1:29 PM (GMT -7)   
Yes, immediate relief, and a feeling of winning the battle by choosing to rid myself of that mean, angry colon. Sure, there was surgical pains but nothing compared to the churning, grinding, stabbing pains of digestion. It was an empowering event to empty my bag for the first time because I was in control.....I got to decided when and where we unloaded this thing. I got my life back that day.

Subtotal Colectomy w/ Ileostomy May 16, 2007.


<FONT color=#800080>I'm off the meds!!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 1:35 PM (GMT -7)   
also so you know, they probably wont let you empty your bag by yourself for a while, because they have to keep track of the output, so this is totally gross, but they brought this cup thing and emptied it into the cup thing while i was on the bed, that was so nasty! lol.
so be prepared for that.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/25/2009 2:12 PM (GMT -7)   

We saw our daughter in recovery. She had an issue with a dry eye (they say it is common with long surgery). It felt irritated. And she was very dry in her mouth. As for other pain, she had an epidural and a pain button. We laughed because she learned to use that very, very fast! When we first saw her, she was on her back and had no energy to move. It took all her strength to find the pain button the nurse gave her but once she did, it was her lifeline. The first 24 hours were mostly drugged. She still complained about being extraordinarily thirsty (she wasn't allowed to drink). Drops helped her eye. She didn't have an NG tube when we saw her. She did complain a bit about her catheter (only for the last 12 hours or so that she had it). Of course she got her period then too so it was quite a mess. Luckily she had fabulous nurses who went above and beyond. Once the catheter was out, she became a different person. She had more trouble than many here when it came to walking. It knocked her out just to make it to the door of her room.

When the surgeon saw her after her surgery, he asked her "Don't you feel much better with your colon removed?" My daughter, being honest (and a bit cranky) said no. Her reasoning was she had been in remission at the time of her surgery. Still she didn't regret the surgery.

Her 2nd surgery was a breeze. She was smiling almost immediately, walking the floors, etc. She still feels this was the best decision for her.

BTW, I think your colon being good is like when you are in labor and going to the hospital. All of a sudden, the contractions stop (or slow down) and you think, maybe I'm not really in labor or maybe I'm not ready to have the baby.


--Mom of bratcat (17 years old) and nonamejames (20 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!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 1/25/2009 4:26 PM (GMT -7)   
Robin--you are mindreader! I was thinking the same question this am. So many questions keep popping into my brain. Just got 2 books but in the meantime-- this may be silly--Where does gas go? Into the bag? Especially if your anus is sewn up--I just don't get it.

THANK YOU!!
24+ years with Crohn's/colitis; fistulizing crohn's; pentasa; started humira 7/1/08;codeine for D; sometimes supplements: MSM, e, selenium, C, B complex, multi, iron; recent meds to get through til surgery include propranolol and xanax


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/25/2009 5:29 PM (GMT -7)   
sammies it is not silly...everything stops at the pouch so, yes, gas goes into the pouch. There are many different pouches out there with filters that can help alleviate the gas build up. Some definately work better than others! It always goes back to a personal choice...many of us use different brands and for whatever our reasons are, are really happy with the ones we use!!

Keep asking away!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 7:21 PM (GMT -7)   
So if the output can happen within an hour or more after you eat, do you have trouble with nutrition? I'll have to admit that after being a big mamma for the past year and a half I am quite ready to be back down to a 9/10. Do you find that it's more difficult to put on weight after the ileo? I kind of hope so. : )

That's my question for now...

Thanks!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 7:25 PM (GMT -7)   
sadly, its not harder to put on weight! its much easier, lol. BUT you will feel good enough to exercise and be able to eat healthy,so that makes a difference.
There are some things that your body doesnt absorb as well, but its mostly just water, which is why we have to drink so much more. Also the amount of hte B vitamins you absorb can be affected, so just take a B multivitamin, either the shots, or one that dissolves under your tounge.

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/25/2009 8:39 PM (GMT -7)   
I was in so much pain and so sick when I had my surgery, and I remember when I woke up in my room I was thankful for the pump. I was itchy from the pain meds so they gave me benadryl and I was pretty out of it the first day. I was so glad that it was over, I told myself that this pain will get better, not like with the UC. I walked the day after surgery and it wasn't easy, but by the time I got home (4-5 days later) I wasn't even taking anything for pain.

My second surgery for the creation of the jpouch was more painful at the incision site, of course mine were open surgeries. I've heard that lapro is much easier.

I'll be watching for updates after your surgery--All the best wink
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2009 9:23 PM (GMT -7)   
ask for some phenogren or zophran to take WITH your pain meds, it will help with the naseau from the pain meds and the pred withdrawal

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/26/2009 5:45 AM (GMT -7)   
The sm intestine absorbs the nutrients....so, you don't loose weight when they take your colon and you can put the lbs on easily since you can eat. BUT don't let that stop you in the beginning. Once you can eat, EAT! Just don't let it get out of hand and eventually you'll go back to a sensible diet (I don't mean dieting, but what you regularly eat).

I have found a way where I can eat about 6 meals a day (small ones) so my "Stanley" is happy and I don't gain...when I exercise, I loose the excess, but I am happy just the way I am now.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/26/2009 6:35 AM (GMT -7)   
I am really looking forward to exercising just in the slightest! I do have the best of intentions...I purchased a little mini stair stepper b/c I love how it makes your bootie burn...AND I can move it around the house and use it while my son hangs out in bed...anyway, I was so excited about getting this b/c my UC was at a point where I could do some sort of movements...so I was starting to walk our dogs after my son and husband went to bed...I was SO HAPPY!!!

Well. Two days after purchasing my amazing stair stepper we had a water leak from our claw foot tub in the bathroom and I slipped and seriously damaged my knee...it was so painful I saw spots!!! THEN that same week my first abscess surfaced in my heal and that following weekend the MRSA infection occurred in my arm, and the following week I was hospitalized. GRRR!!! So, after being left with open wounds and serious pain I could no longer use my stair stepper or walk the dogs...once I was able to walk the dogs again my third abscess arrived on my shoulder!!! AND my UC was crazier than ever so it hurt to do any form of exercise.

Needless to say I am very happy that this surgery will not only get me away from abscesses, but give me back time with my dogs and my unused stair stepper. The unfortunate thing is, is that I three (two came up yesterday) skin cysts under my left armpit and I have a feeling they will be lanced or removed during my colectomy. *sigh* But I do have a container of lidocaine gel, so I'll be smearing that stuff all over my armpit until they're healed.

Have any of you guys had armpit issues? I'm nervous. I can handle the other wounds b/c they were on surface areas, but the armpit? OUCH!!!

Well, thanks for listening/reading to my venting. : ) I'm becoming more and more nervous as the countdown begins for my surgery.

Have a great day ladies!!! You are AMAZING!!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/26/2009 7:47 AM (GMT -7)   
Remember the mean girl in school who would act like your BFF one day and then go back to her evil ways the next? That's your colon! Don't let her fool you... she's pure evil!! devil

I will never forget the day after surgery, because the pain I had felt for years was completely gone! It was the most amazing feeling, and I can't wait for you to tell us how great it is to be UC free!! smilewinkgrin
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2009 9:22 AM (GMT -7)   
lol ce-ce i WAS that girl! Well a little bit anyway, lol.
I never had any arm pit issues, but skin problems go along with UC

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/26/2009 1:04 PM (GMT -7)   
I love the mean girl talk! Yeah...my colon is a bully...it's trying to fool me but it's NOT! I'm even pushing the envelope b/c I know it's only a matter of time before it reminds me why I'm having this procedure. : ) For instance, I slept on my side and stomach AGAIN last night...AND I had an egg sandwich for breakfast, and I had sour cream and cheese on my baked potato. Hmm. That'll show it. : )

Honestly, I haven't felt this good in MONTHS!!! I'm absolutely amazed. I still have horrible symptoms and urgency through the night, but I'm not in pain. It's so weird. I installed a shelf in the bedroom last night, and this morning I was disappointed I had to leave for work b/c for the first time in months I was overly motivated to complete projects around the house. I love this!!! I have to leave for work again in an hour or else I'd be in the middle of sanding a door and dishes. : )

Leah, were you a little on the preppy-side in high school? : ) I tried to have an attitude with people but my feelings always got in the way...I had plenty of friends that could swith the b---- switch! However, now that I'm older and wiser my switch is used quite frequently. : )

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!

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