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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/14/2009 8:49 PM (GMT -6)   
I am the most recently excited b/c I spent all week with my son with no help.  My mom did do my dishes a few days ago...but I've been keeping up on them too for the most part.  But do you know how excited I am about finally taking over complete and total Mommy-ness?!  Whoo-hoo!!!!!!!!
 
My son can tell a difference too...he's just been more apt to want my comfort and my loves...when we had a lot of help from family he would go to just about anyone but me.  cry    That made me very sad.  But no more!!! 
 
Then as I posted recently I had the extreme urge to pee.  I do know how silly that sounds, but it was pretty awesome to me!  I was literally sweating b/c I had to go so bad, and I really didn't care b/c I would rather pee myself than have an emergency UC moment...so bring it on bladder!!!
 
I do remember driving by myself for the first time...I just ran a few errands close to home.  However, my first trip to the store was so liberating!  I lolly-gagged...I read labels...I looked over all colors, sizes, etc.  It was awesome!  My tummy and ostomy area was in extreme pain, but whenever no one was around I slumped over my cart and kept on truckin'.  yeah    Also, going to the store with my son on my own was the most fun!  Now, once I got home I had to call my husband to come home from being out and about socializing with family, as I was sore and overwhelmed.  He's been the most amazing support!
 
Oh!!!  And the food!!!!!!  My first week or two home almost every meal were frozen chimichangas with loads of sour cream...almost every meal involved sour cream!!!  I LOVE SOUR CREAM!!!!  I ate cheese!!!  I had favorful food!!!!  Even some spicy foods!!!  Just the other day I had super spicy cheese dip and I was so scared...some feelings die hard...and I didn't get hurt!!!!!!!!!!!!!
 
*happy sigh* 
 
I've had so many firsts.  Our fourth anniversary I realized my attention was never fully on those around me b/c I spent so much of my energy try to cover my pain and exhaustion.  I'm able to give all of my attention now...Wow.  I never knew my attention on others had been compromised. 
 
I can see my ankles.  Being on 40mg prednisone for 18 months causes lots of swelling.  I can see the tendens on my feet.  I've not seen them since I was pregnant. 
The dimples on my chin are back.  The shape of my face is forming and my cheeks are mine again.  As is my chin and almost a jaw line. 
 
I'm told by almost everyone that I look healthy.  I hadn't realized just how sick and how unhealthy I seemed prior to the cure.  This has given me an even greater appreciation for having this as a possibility and reality.
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 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 3/14/2009 9:27 PM (GMT -6)   

So many great firsts! I'm so happy for you! :-) Is it okay if I share a few, too?

Sleeping through the night without getting up every hour to use the bathroom. I woke up refreshed for the first time in years!

Shopping for clothes and groceries without having to beeline it to the bathroom several times.

Being able to eat Mexican, Italian, and Thai food again. Life's too short to eat bland food!

When my gastroenterologist told me that I didn't need to schedule a follow-up appointment. smilewinkgrin


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.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/15/2009 3:47 AM (GMT -6)   
So I guess these are things I am able to look forward to.

I do have a first even two days from surgery. Not waking up cramping doubled over in pain and running to the bathroom.

I did get my period the day before surgery, so I am dealing with menstrual cramps- funnnnn....

Also, even though my appetite has diminshed ( they are only giving me clear liquids) I am anxious to eat something solid soon.

I see you guys are eating everything- when did were you given the go on this?
How long for low reside diet?

Thanks guys and I am glad to see you are doing so well.
Jackie, 43
Pancolitis, DX October 06

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


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/15/2009 6:03 AM (GMT -6)   
Doesn't it feel like you were just given a new life?! Ditto the not having to get up at night!!!

Jackie--you probably would have gotten your period while in the hospital anyway...I had just finished mine, had surgery, and got it again the day after...double whammy!

moreglorydays
Regular Member


Date Joined Feb 2009
Total Posts : 38
   Posted 3/15/2009 9:44 AM (GMT -6)   
Jackie, my surgeon told me ten days after surgery that I could eat whatever I wanted, but to introduce foods one at a time to see how the body responds. The literature I was given in the hospital, and the stoma nurse advised to be extra cautious the first six weeks as the small intestine is still learning its new role, and is also somewhat swollen and irritated from the surgery. I have expanded my food choices compared with what I was eating before surgery in the throes of a UC flare up, but I have not thrown caution to the wind. I am definitely avoiding the "foods that can cause blockages (sp?)." I have eaten spaghetti with meat sauce, grilled cheese sandwiches, tuna melts, a chili relleno burrito, orange juice, and Girl Scout cookies - all things I wouldn't have dared eating during a flare up - and had no adverse reactions to any of them. I do chew, chew, chew, and if anything feels fiberous in my mouth, I discreetely take it out and put it on my plate or in my napkin. I also make sure I drink plenty of fluids when eating.
Last weekend my family and I went to one of our favorite Mexican food restaurants, and I ordered a chicken burrito. I ate half (they are huge), and munched on tortilla chips with salsa making sure I was drinking plenty of water. The next day I had the worst stomach cramping I have had since my surgery. I was miserable for hours - and it was the FIRST time it really sunk in that I couldn't try to pass gas. Last night we went to the same restaurant and I ordered the same thing, but this time I only ate a few chips with NO salsa, and today (knock on wood) I feel fine. Both times I did use Gas -X, but I guess that is what people are talking about when they say to try a food and if it doesn't agree with you to wait a while and try it again. It has been three weeks since my surgery.
scheduled for permanent ileostomy surgery 2/19 proctocolectomy with permanent ileostomy 2/19
tried asacol, rowasa, remicade, humira
currently on 40 mgs.10 mgs  5mgs. prednisone, 20mgs and tapering every ten days
51 years young


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/15/2009 9:59 AM (GMT -6)   
I came home on 2/28

-taking a shower by myself without my husband having to hand me the shampoo and make sure I didn't fall over: that happened just 5 days after coming home---love that hot water.

-going to the blood lab ie. getting out of the house on the 6th day after surgery and getting McDonald's burger

-going up and down the stairs without my husband making sure i didnt' fall (we have very steep stairs)

-going out to lunch and spending time in the public library--went to the restroom to burp the bag but didn't have to run there 3 times to avoid accidents

-sitting through a movie without have to pause to run to the bathroom

Today, I'm hoping for a short walk outside and a trip to the grocery--maybe out for a grinder.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/15/2009 10:28 AM (GMT -6)   
sammies-i stopped at McDonalds on my way home from the hosptial too! Best darn food i ever had, just cause i knew it wouldnt make me have to run to thebathroom!

jblue-most of the time you get a low residue diet for the first 6 weeks, that just means no fresh (uncooked) fruits or veggies, no stringy meats, no nuts or seeds.
But you can eat those later. Its just anything that you would htink hard to disgest. Also be very careful of foods that cause gas for the first couple of weeks. Cause, gas for the first couple of weeks is HORRIBLE if you get it! After a few weeks your body will figure out how to deal with gas causing foods and it wont be as
bad.

back to the firsts though

I think my fav first was going dancing again though!

NEsailor
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 3/15/2009 10:35 AM (GMT -6)   
Jackie - they started me on 'real' food (my surgeon said more people died from the surgical diet than he ever lost!!!) while I was still in the hospital. (a million years ago when they didn't toss you out the day after!).

The head nutritionist selected a few different things to see what I might like and had those all sent up. She arrived at my room to check in and found me sitting up in bed with tears running down my face. Poor woman (the grandmother type, kind of soft, squishy and wonderful) came over and asked what was wrong. I said I hadn't eaten any food in more than a month and I wasn't sure I could handle it! That sainted woman sat on the edge of the bed and hugged me while I cried. And then sat with me while I tried a bite of this and a bite of that and drank a container of milk. Seemed like heaven at the time. Started to eat again was a huge deal!

Sammies ... a 'grinder'? Are you in New England?

Sailor

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/15/2009 1:23 PM (GMT -6)   
I had surgery in July of 1984.  In May of 1985, my boyfried then but my DH now, said "Let's go to New YorK City for the long Memorial Day weekend."  Without even thinking about it, I said "OK".  Packed a bag and left the very next morning - no hotel reservations and no plans....  We had a BALL during that trip.   That was my first real trip Away and I remember it like yesterday.   (I have pictures of us around the city and recently dug them out before we went back to NYC just 2 weeks ago.  We only had one day in the city this time.  What a treat!)

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/15/2009 4:12 PM (GMT -6)   
This is a great thread- lots of great advice. I was wondering exactly what a low residue diet entails.
For example, I am craving a home made tuna fish sandwich on white bread. I never eat white bread, but I think for now I will. low residue, right? Do you all think tuna fish with mayo and a bit of onion would be okay?

I also want wonton soup, would that be okay? Grilled cheese? popsicles? Italian Ice? No ice cream for me for a long while... got sick today from that.
ALso for some reason a taco bell bean burrito? that is not a good idea, i guess.

Thanks to all.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,

Prednisone40 mg- tapering slowing, Iron, Vitamin D
Surgery March 13th- total colectomy ( first step)
2nd step in about 3 months
3rd step in about 6 weeks after that


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/15/2009 6:44 PM (GMT -6)   
I think your sandwich will be fine, BUT when you eat onion it can give you gas, and it will make your bag smell! And sometimes the smell of onion just lingers in there, and alot of times onion comes out the way it went in too, so dont be surprised if you see chunks of it, lol.

I dont know about wonton soup, not sure whats in it.
The other things are fine, just use white bread for now, not wheat or rye or any of that.
You can eat that taco bell thing, but thats gonna be some SERIOUS gas, and you are gonna hurt! i think i would give that a few weeks, lol.
My biggest mistake was eating pizza the week i came home from the hospital, OMG i though ti was going to die from gas pain! I can eat it fine now, just back from pizza buffet actually, lol.

Low residue means not eating things like fresh fruits and veggies, stringy meants, no nuts or seeds, nothing hard to digest.
I think its peggy that says put soemthign in a glass of water and if it falls apart easily then its ok.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/15/2009 7:19 PM (GMT -6)   
Not having to...go to the store/order on line...my bulk supply of 4x4's for my fistulas!!
 
I was so excited to ride my horse for the first time...I'd had 3 setons for about 8 years and was always in pain when I rode him shocked
 
Hey NE Sailor!  I noticed the "grinder" comment, too smilewinkgrin    I'm originally from Connecticut and don't hear that very often...Sammies, you put a smile on my face tongue

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/15/2009 9:29 PM (GMT -6)   
This is a great thread! I'm really enjoying getting to know you all. :-)
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.


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/16/2009 7:44 AM (GMT -6)   
yes I'm a New Englander since birth! Funny, this morning I was wondering if we might have one more big snow like the April 1st blizzard of 1996.

The grinder was good--ate some for lunch and the rest for dinner. I tried some peppers so I'm still gas central this morning and they are comin' out chewed but that's ok. I enjoyed being out with my brother and especially enjoyed the salami. Salami doesn't seem to bother me (salty though).

Then we went to the grocery! yahoo--I was on my feet an hour! My first trip to the grocery. I thought I was going to need to sit down and send him aisle to aisle for stuff but Robin was my inspiration--I did the whole store. Of course, he loaded the belt, then the cart, then the car, and let me sit directing him as to where to put everything in the kitchen.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/16/2009 8:21 AM (GMT -6)   
ok whats a grinder? i kept hoping someone would explain...

and yay for your store trip!

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/16/2009 2:39 PM (GMT -6)   
a grinder is also known as a hoagie or a sub sandwich. yum
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/16/2009 8:33 PM (GMT -6)   
Sammies,
Congrats on walking the whole grocery store! After surgery, I would start out by riding the cart around, which was more fun than sitting on the bench at the store entrance while my hubby did the shopping. The first time I walked the store, I was in a full sweat by the time I got to the checkout. It was quite the workout. Good job!
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.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/17/2009 11:47 AM (GMT -6)   

You know...there are so many new moments and exciting situations I can't even think of them all.

I do appreciate being able to throw my son around...flip him on my shoulder, fly him around, help him do handstands...it is so much fun!!!  He loves being wrestled with, and for some reason I'm really the only one who can be a little Tag-Team-ish with him...he gets freaked out by everyone else.

I love not doing Sudoku every day.  That's what I would do to pass the time while in the bathroom.  blush    We all know that much our life has been spent on the John...but I tried to keep my times of trauma as entertaining as possible.

As you may notice, most of my big moments involve my son.  I did this surgery for him.  It was a no brainer when I thought about how much he has suffered due to the UC, and enough was enough.  The pain was unbearable, but listening to cry b/c I could not finish walking him to sleep, or was not able to hold him very long b/c I had to run to the bathroom was much worse.  I'm able to be a hands on Mommy again...and that's helped to bring back my identity and self-worth.

I can just do so much!  Much more than I could prior to surgery.  I'll say this over and over and over again...my favorite of all though is to feel the UC gone.  There is no feeling where the pain was.  My body isn't struggling anymore.  I can feeling the healthiness now. I'm going to start working out soon, and I've not been able to do that in two years.  I can't wait!

I feel that we have all been given a new lease on life.  We are fortunate to have had diseases that can be cured or given long-term remission.  I feel our attached accessories are a small price to pay for having our lives back.  This is just my belief.  I know many are struggling and not able to fully accept the new life style...for me it is the best gift.

smurf  

Oh and I completely agree!!!  Where's the bag?!  yeah


: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 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


Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 3/17/2009 12:07 PM (GMT -6)   

Hi Robin,

I am new here (usually on uc site) and am facing removal of my colon.  I too have pancolitis.  My colonoscopy last week showed pre-cancerous cells in upper colon where there is currently no flare.  I am having a repeat colonoscopy in about a month.  If that shows the same then we need to have the "surgery talk".   I wanted to ask you some questions since you have just gone through it.  I have 2 1/2 year old twins that I need to think about too!

How was the surgery?  the pain?  the recovery?  how long in the hospital?  Any info you can offer would be great as I am terrified!

charlotte


Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/18/2009 7:53 PM (GMT -6)   
are you going for the jpouch-- if you do the procedure lap. it obviously will be a lot easier. Right now the pain isn't too bad. I am 6 days out from surgery. Biggest problem for me is dealing with the bag--- emotionally it is hard for me.

I have a 5 yr. old and I want to do more fun things with her... feel like she has been shortchanged
Of course my teenage daughter needs me too

Research as much as you can about the procedure. Recovery depends on type of surgery. I will see my surgeon for follow up APril 6th and then he will set up next surgery ( hopefully).
That will be 4 weeks and then maybe if I feel up to it I may go back to work.
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


Charlotte09
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 3/18/2009 8:30 PM (GMT -6)   

Jackie,

I know what you mean about kids feeling shortchanged, I have 2 1/2 year old twin girls and always feel that way.  I feel so guilty when I can't do things with them because I am sick or running to the bathroom or in pain.  It breaks my heart.  But you are on your way to being free of the guilt and being able to spend more time with your kids, without disease!

If I may ask, what was the reason for your surgery?  Was your disease so bad or were pre-cancer cells found?

Thank you for sharing with me.


Charlotte
 
UC diagnosed in 2002
Pancolitis
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
 
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/19/2009 3:33 AM (GMT -6)   
Robin,
Your most recent post moved me to tears of joy. I'm so happy that you're happy! Now, you're a healthy, active mom for your son, wife for your husband, daughter for your parents, sister for your brother... the list goes on! You being healthy affects a lot of people in a very positive way!

It was fun chatting the other night! smilewinkgrin
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.


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/19/2009 10:35 AM (GMT -6)   
Charlotte-

I had severe colitis- I fought the surgery decision for a few months. When I landed in the hospital with dehydration and low blood pressure and could literally not function it was time.

Unfortunately, having serious anxiety issues right now. I have a history of this and it pops ups every now and then. I guess with the stress of the illness and dealing with the bag- it has become too much for my emotions.

Then today- I was emptying the bag and it went all over the floor. I just paying attention, I guess. What a mess!

The nurse came today and change the whole system for me. I think I can do it on my own now.

Any advice on dealing with anxiety issues?

By the way thanks to all for being here- it is really helping me deal
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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/20/2009 9:33 AM (GMT -6)   
as for the anxiety, its really hard at first to deal with this, some people say when you lose a body part you go through the stages of grief like when someone dies.
Just try to remember all the things that having the bag is going to allow you to do! look at it as a positive thing, remember you can go whereever whenever and that NOONE knows unless you tell them!

As for dumping it on the floor stuff like that happens, once you get more used to having the bag it wont happen as much.
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