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summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/3/2008 9:20 PM (GMT -6)   
what are some of the little things that happen that make you glad you had your surgery?
i come up with one almost everyday, for the past year, and some of them are stupid little things, but they just make me sure i did the right thing.  here are a few of mine
1. having enough energy to mow the yard and weed eat, and do it without runnign to the batrhoom
 
2. being able to help my Dad build a porch before i would have had to go to the batrhoom so many times i wouldn't have been able to help
 
3. eating chicken all day!
 
4. not worrying about what i eat, when i eat it.
 
5. getting up thirty minutes before i need to be somewhere, instead of 2hours like before, it took me that long to quit having to go
 
6. being able to sit in line to pick up my son at school, and to go on his fieldtrips.
 
7. not worrying about traffic!
 
8. knowing that when we go to the beach in September with my son i will be able to go down to the beach, and get on the water slides! 
 
9. taking my son places by myself, i was always afraid to before, because i didn't know exactly how i was gonna get to the batrhoom quick enough if i had too, and what to do with him while i was in there.
 
those are just a few i can think of a lot more, but don't want to type them right now, lol.

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 5/4/2008 7:12 AM (GMT -6)   
No more horrible abdominal pain and then having to run to the bathroom and pray that I'm going to make it!
Having more energy
Eating salad & fresh vegetables
No more medications
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
Total colectomy August 10, 2007 -2nd step J-pouch formation -January14, 2008 -3rd step -April 14, 2008


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/4/2008 4:27 PM (GMT -6)   
I'm thankful for...
 
No more prednisone or night sweats
 
Being able to sleep through the night
 
Eating whatever I want, whenever I want
 
Shopping without having to go to the bathroom
 
No more pain, anemia or dehydration
 
No more doctor or hospital visits
 
Feeling healthy all the time!


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 5/5/2008 10:06 AM (GMT -6)   

Feeling healthy.

Being back to a normal weight.

Being able to play golf and do gardening.

Going back to work. (Really!)

Being able to attend family get-togethers.

And countless other seemingly small but very meaningful things.

Richard

 


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 5/5/2008 5:12 PM (GMT -6)   
Being able to eat without being in pain later.

Being able to go to the bathroom!!

I'm actually cooking again and enjoying food.
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 5/5/2008 6:44 PM (GMT -6)   
It kills me to think of all the things i didn't do with my kids before my surgery. I missed all but one little league game because there wasn't a bathroom there. Now i go to ALL the soccer games and will be coaching his street hockey team. THATS why i'm happy to have had surgery.

Been to concerts and not worried about the bathrooms. Where before it was a waste of time buying tickets since i'd miss most of the concert anyway.

Actually FORGETTING where all the public restrooms are on my way to work. Where as before i KNEW EVERY SINGLE ONE FOR EACH MILE I HAD TO DRIVE.

Golfing and NOT having to use the woods for other things than finding my last shot.

NO MORE PREDNISONE!!

I woke up about 20 minutes before i had to leave for work this morning. Like Summer said, i was the same way. Used to get up about 2 hours before i had to leave. And i leave about 5 am, so i didn't sleep much.

Another Summer point. Taking the kids by myself. NEVER would do that before surgery. Hated running with the kids to find the nearest bathroom. SOOO glad thats over.

I'm sure i can come up with more later.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 5/6/2008 4:04 PM (GMT -6)   
wow i thought i was the only one who took forever to get out of the house for going to the potty! also sleeping thru the night....love that

shopping....
no pain....
i dont miss pooping all that much lol

i really miss the girl boy things ;o) ( if u guys catch my drift) havent really gotten back 2 that yet...lol no one to indulge with
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/6/2008 5:34 PM (GMT -6)   
lol praying, you will find someone!

i didnt' realize how much i missed having fun and doing things with friends! since about septemeber of last year (abotu the time i was recovred from surgery complelty and adjusted well and all) i started wishing i had friends to do stuff with and hang out with people again. I just realized today that was why i was bored all the time, lol.
and friday night, i got to go out with some friends to a movie and then out to, of all places, the waffle house, for a whole night and it was so fun!
i watched the movie with no worries, i ate a waffle with no worries
what silly things to be happy about!

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 5/6/2008 7:02 PM (GMT -6)   
praying4healing said...

i really miss the girl boy things ;o) ( if u guys catch my drift) havent really gotten back 2 that yet...lol no one to indulge with

you're not alone, i'm having trouble in that dept too.  i'm 26 and it's hard to explain to ppl :-O 
 
--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/7/2008 9:49 AM (GMT -6)   

I want to thank everyone for posting in this thread.  I am a UC sufferer that is facing surgery as my only option.  All of the "little things" you all are pointing out are things that I miss out on now because of this disease.  I hope you don't mind me lurking around on this board even though I have not yet had an ostomy.  It helps me get positive feedback from an procedure that others tend to look very negatively at.

Thanks again, John


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Just found to have a large hiatal hernia 5/2/08
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 30mg tappering 10mg every two weeks back to 40 mgs
  • Asacol 1200mg three times a day
  • Imuran 100mg got really sick stopped taking
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg
  • Asprin 81 mg

 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/7/2008 6:05 PM (GMT -6)   
John-that is the exact reason i made this thread! so that people who were considering surgery, or those who were just getting better from their surgery would have something to remind them of what they had to look forward to!
and of course we don't mind you lurking, but post some too, lol!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/7/2008 6:07 PM (GMT -6)   
gas-x is a lot cheaper than immodium, and i don't need gas-x very much at all
and less medicine=more money!

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 5/7/2008 6:46 PM (GMT -6)   
John, i've been on all that medication you mention and then some. I still believe the meds did more damage than the disease. As Nike says " JUST DO IT". If i had the actual option to have an ostomy i'm sure i wouldn't have done it. I'm glad i never had the option. No more meds, no more worrying about bathrooms, no more pain, no more feeling sick EVERYDAY. The surgery DOES make things better. Dealing with the bag is MINOR compared to the little things you get back.

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/7/2008 11:42 PM (GMT -6)   

Well after 15 years of symptoms, five years of diagnosis, five years of bad symptoms never under control and that little ICU scare I had a month ago (I was in bad shape, intubated and sedated for five days), I have finally found a GI doc who says I need to seriously look at surgery.  He had me set up an appointment with a surgeon so I go to have a consult with her on June 10th.  Mentally I feel I am ready for this.  After all the pain, embarrassment and now being limited to getting out very infrequently due to the extent of this foul disease I think it makes it a lot easier to face what lies ahead.  I just want my life back and to do things most normal dads do.  Thanks again for all the positives to look forward to.

John


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/10/2008 5:53 AM (GMT -6)   
John,
You've been through enough years of pain and suffering, and I'm glad you're open to the idea of having surgery. I don't know if you know this, but surgery is a cure for UC, so once you've done it, you'll never have to deal with it again! It will be wonderful for you to be healthy again, especially for your wife and children.

Having an ostomy is so easy. I change the wafer once a week, and that only takes a minute or two to peel and stick on. The bag clips onto the wafer and has a velcro closure at the bottom for easy emptying into the toilet. You'll never have to sprint to the bathroom again or even worry about having to be near a bathroom. After what we've been though, that is a dream come true!

You'll also be able to eat whatever you want and won't have to take any medicine. Nobody will know that you have an ostomy, since it's completely hidden under your clothes. You can see photos of us on our photobucket.com page. The user name is crohnsdisease and the password is 6mp3asa. Feel free to post of photo of yourself, too!

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Small Bowel Obstruction Surgery in '08, caused by adhesions.
Disease-free, medicine-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/10/2008 10:05 AM (GMT -6)   
there are even a few bathing suit pics up there too, so youcan see that it won't show through those either, although i am not sure if there is a pic of a guy in a suit or not, but at least you can get an idea (don't laugh at me in my bathing suit though!)

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/10/2008 5:41 PM (GMT -6)   

Thank you so very much everybody.  You have helped me with the biggest hang up I had which is fealing abnormal after the surgery.  I can adjust to anything given enough time, I was just worried that I would look or at least feel abnormal causing my self image to get in the way, like crapping myself in public is a better image sad    I saw my GI doctor yesterday who is all for me seeing the surgeon.  He was with me through this last ICU stint and was worried that I would be back in the hospital if we waited till June to talk to the surgeon so he called in a favor and I see the surgeon this Tuesday. :-)   I have been researching this for a little while so hopefully that will make the consult go better.  As long as the surgeon is ready, I am.  I want my life back and with my last hospital trip I would have to say I was lucky to have the chance to choose (I was all but dead when they got me there).  Thanks again and I will give an update when new info comes in.

 

John


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/10/2008 6:14 PM (GMT -6)   
John,
I'm glad you're going to be able to talk with the surgeon on Tuesday. I thought waiting a month seemed like a long time, so this is much better.

When it comes to self image, I think everyone handles it differently. I've never had a confidence problem and my husband has been very supportive, so I breezed right through this without any issues. Like you said, having UC causes a whole new set of image problems.

The only thing I had to change wardrobe-wise was to switch from wearing a two piece bathing suit to a one piece with a skirt, which was no big deal. Plus, I'm 37, so maybe it was time to do that anyway! LOL tongue

Please let us know how your appointment goes on Tuesday, and feel free to ask us any questions in the meantime. That's why we're here. :-)

Cecilia

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/13/2008 4:28 PM (GMT -6)   
Made it to my appointment today, no thanks to my UC symptoms mad (I won't miss those, the symptoms that is).   I have a two hour drive from my home to the city where the surgeon is so everyone knows the fun eyes   I had.  She suggested the j-pouch which I am still thinking over.  She says I am a good candidate but I have heard many stories about the problems that a person can have pretty much being what I am trying to get rid of in the first place.  Because of my severity and the prednisone use it would be a three stage operation so I could choose not to do the j-pouch after the first surgery and it would be all but a permanent iseostomy anyway.  They would just have to go back in to tie up the "loose end" so to speak. LOL  After she did her exam she was concerned with the blood and drainage and when she asked me if this was normal I said yeah everday.  She then decided that the sooner the better and is trying for two weeks from today (June 26th).  Insurance and the hospital scheduling may mess with that but that is what she is shooting for.  All the advice and positive feed back you all have given me made it easier so I am one step closer to getting my life back. yeah
 
John
  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/13/2008 6:04 PM (GMT -6)   
well i know it's strange to tell someone you are happy they are having surgery, but in this case it's a great thing!
i really really think this is a great step for you in the right direction. I chose against the j-pouch for the same reason you are thinking about not getting it. But if do go for the j-pouch surgery you can do like you said, if you like the pouch you cna just keep it, there is at least one person on here who did that, it might be Ce-Ce, but i am not sure. Or if you get the j-pouch and you hate it, you can go back to the pouch. either way, i am certain you will be happier than you are now!
and you know, the first time i was sure i had doen the right thing was on the way home from my first post op appt, which is over an hour away, and i was hungry and we stopped and i got fries and a milkshake, andi wasn't worried about eating! i didn't care if there was traffic, if we got a flat tire, none of that worried me anymore!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/13/2008 10:59 PM (GMT -6)   
John,
I checked out your blog. Wow - you sure have been through it with this disease. sad Your stories bring back bad memories of my life with Crohn's before surgery.

Here's how I see it, whether you go with the j-pouch or a permanent ileostomy, you are going to feel great once you're healed up from surgery, and you will be UC-free!! yeah

I was never a candidate for a j-pouch, since I had Crohn's in my rectum (yeah, that was a lot of fun). Sue Bear on here has a j-pouch and is very happy with it. She recommends the web site j-pouch.org for people who want to find out more about it. I also have a friend who had her colon removed due to cancer, and she is doing really well with a j-pouch.

I have a permanent ileostomy and am happy with it, so either way, you are on your way to being finished with this dreadful disease. Please keep us posted on what you decide to do and your surgery date, so we can keep you in our prayers.

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 :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/14/2008 6:24 PM (GMT -6)   
oops sorry about that cecilia, i thought that was you who decided to not go through with the reversal.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/14/2008 10:31 PM (GMT -6)   
that's okay :-)

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 5/14/2008 11:43 PM (GMT -6)   
summerstorm said...
what are some of the little things that happen that make you glad you had your surgery?
i come up with one almost everyday, for the past year, and some of them are stupid little things, but they just make me sure i did the right thing.  here are a few of mine
1. having enough energy to mow the yard and weed eat, and do it without runnign to the batrhoom
 
2. being able to help my Dad build a porch before i would have had to go to the batrhoom so many times i wouldn't have been able to help
 
3. eating chicken all day!
 
4. not worrying about what i eat, when i eat it.
 
5. getting up thirty minutes before i need to be somewhere, instead of 2hours like before, it took me that long to quit having to go
 
6. being able to sit in line to pick up my son at school, and to go on his fieldtrips.
 
7. not worrying about traffic!
 
8. knowing that when we go to the beach in September with my son i will be able to go down to the beach, and get on the water slides! 
 
9. taking my son places by myself, i was always afraid to before, because i didn't know exactly how i was gonna get to the batrhoom quick enough if i had too, and what to do with him while i was in there.
 
those are just a few i can think of a lot more, but don't want to type them right now, lol.
 
And when your brain plays those nasty little tricks on you, and you start to feel negative, just keep a mental not of all the things you just mentioned. It works every time!

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/15/2008 12:43 PM (GMT -6)   

Ditto to all the little things listed above. I want to add two more:

     1. Not worrying about ever getting colon cancer-

     2. Not taking any harsh medicines, as well as potentially poisonous ones like    nicotine patches.  

     3 :-)   Okay a third one--Telling my husband on a trip, "No, I don't need to stop at the

         next gas station. Let's keep on going." 

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