1st year in the life of an ostomate!

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/31/2010 2:44 PM (GMT -7)   
My first UC-free Anniversary is February 6th...and I have to say...my feelings are bittersweet.
 
Having UC sucked...contracting staph infections, one being MRSA that was super scary, sucked...then when my UC decided to become super aggressive and unresponsive to ALL medications I thought that was just down right ridiculous!  My GI mentioned surgery...I began to research...and then I found you...my beloved HW.  Both this and the UC forum was my rock.  You embraced me with love and support that my family and friends simply did not understand how to give.  I went into the surgery knowing that I was not alone.  The information and guidance I received was beneficial to not just myself but my family.  You soothed the hearts of many with your kind words and expressions of empathy.  My family and I thank you from the bottom of our hearts.
 
The adjustments over the past year have been both amazing and annoying...but NOT a pain in the ass!  turn   For instance...
 
I LOVE that my crap doesn't stink!  (thanks to M9!)
 
I also love that I no longer Sudoku (that was what I used to pass time as I set up residence in the bathroom during the UC days)
 
I love that I can play and roll around with my son as much as I want!
 
I love that spicy food has zero affect on me!
 
I do not like the itchy feeling the day before or day of accessory change...but I do love calling the appliance and all that my accessory  yeah
 
Ooo...I also LOVE the feeling of a brand new accessory...it looks pretty, there's no moisture uckiness around the folded closure part and it seems that things slide out a little easier...TMI?...sorry  blush
 
I do not appreciate abdominal cramps...really? confused   I believe any woman who has suffered through the pains of UC has paid their dues to the abdominal gods and we should never again anywhere near the region...unless of course it's appropriate pregnancy pains.
 
I am thoroughly scared of broccolli...with the first month or so I had a horrible blockage from broccolli and really have not ate it since  shakehead   I know there are ways around it, so I'm going to try it again (in the mushy state) very soon.
 
I have a love affair with Immodium...I went without for a few weeks and decided that was silly...Penelope is just far to vocal for some public settings (especially school) and Immodium is her muffler  smilewinkgrin
 
I'm annoyed with how quickly I can become dehydrated.  I can tell my body has drastically adjusted from when I first had the surgery, but there are days where I haven't drank nearly enough I can tell...so nono  shame on me for not drinking enough water.
 
I have greatly appreciated the ability to do anything I want now...things that UC tried to take away...like picking up boxes...moving things...throwing my son around (he's 2 and loves to wrestle!)...going for road trips...etc.  LOVE IT!!!!
 
I also love not having to scope out the nearest bathroom whenever I'm away from home.  Which brings me to a complaint...
 
I HATE when toilets have a high water level in the bowel...it splashes when I empty!  Yucky!!!!  The bathroom at my office is like this, and the downstairs bathrooms at school are an issue.
 
Have I mentioned that I love my M9!?! cool
 
I also love the Eakin seal and Hollister 88300...life is good!
 
Oh!  I can eat popcorn now!  I obviously have to pick through and eat the fluffy fully popped pieces but who cares?!  The popcorn princess is back in business!!!!
 
I am bumbed about not being able to eat certain things like potato skins...I really wouldn't dare...well, I did once and that was not fun...really not worth it.  Of course I eat them when they're chopped small enough...I eat about anything if it's small enough, but I prefer potato skins whole and chewy...yum...but not anymore.shakehead
 
And while we're on the food topic I'll just say that I do not like eating Taco Bell bean burritos before bed b/c that usually always ends with a pop...popped bag that is! shocked  I don't know why but those burritos and night time just don't work for me...don't get me wrong, I enjoy them earlier in the day and possibly an afternoon here and there, but never as dinner. 
 
And then there's green peppers...oh green peppers...I hated them before my pregnancy but now they're a favorite food, and one I must be careful with...just putting it out there.
 
My family is very glad to be out of crisis.  Being UC-free is such a treat to everyone in my life.
 
I learned that individually, as a couple, and as a family we were not emotionally aware of what living with a chronic illness would entail.  It's been a struggle but I believe we have overcome.
 
I am over half way finished with my master's degree and every research opportunity I have I focus on some aspect of chronic illness and an emphasis in IBD.  Once I am licensed I will specialize with individuals, couples and families with IBD, and those enduring traumatic situations such as emergency surgies, hospital stays, etc.
 
My husband and I were on the brink of separation several months ago, and after very hard work and dedication are finally in a very good place.  We will be celebrating our 3rd wedding anniversary March 3rd, and we are determined to make 2010 our best year yet (as one month after our wedding in '07 I had my first flare and then a month after that we were pregnant...it's been busy!)
 
 
I hope that each of you have had positive experiences during your adjustments.  I realize they are not always wonderful...like dropping the end of the accessory either while it was filled with water (which I always use each time I empty) or full of crap (hahaha).  Also the feeling of leakage is the worst...there's always that initial "no way!" to the never failing "son of a bi*ch"...and then the time it takes to clean the mess and replace the accessory...grrr.  
 
But really, I hope that you all are enjoying life and appreciating each moment of every day.
 
My first year post UC has been one to remember, but it's the year to come and the years that follow that I look forward to the most.
 
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

Post Edited (RobinByrd) : 1/31/2010 2:53:58 PM (GMT-7)


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 1/31/2010 2:57 PM (GMT -7)   
Robin,
So glad to hear you're doing well!:) My husband just had his surgery on Jan. 11th, so your words were encouraging. Things are going somewhat rough for him right now, but this truly is a test for the both of us, and we've been married 8 years this February! ;) LOL. Plus we have two children, 2 and 4. But, thank you for posting this! Truly encouraging! I'm just ready for him to start feeling a little bit better! How long did it take you after surgery before you started feeling better? Just curious. Thanks!

Alaina
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
 
 
 
Current Meds:
Levothyroxine (.88 mg)
Sulfasalizine
Prednisone..when all else fails!! :)
 
 
 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/31/2010 3:22 PM (GMT -7)   

Honestly I was in a great amount of pain for the first 3 weeks post-surgery.  I started feeling better about 5-6 weeks afterwards.  Then 3 months after I was good...6 months after I was great...9 months I was super...and 1 year later I am awesome!  smilewinkgrin

I know it's hard, especially with to little ones.  But it retrospect it was the UC that was hard...the surgery and recovery was the final chapter.  Oh, and I cannot stress the importance of water!  I use the Crystal Light individual packets in a large cup...I like the wild strawberry.  I would recommend drinking over 100oz a day...I know it sounds like a lot but the more hydrated your husband stays the better he will feel.

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


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/31/2010 6:46 PM (GMT -7)   
smurf Robin smurf

well said...glad things are going so well...Happy Anniversary!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 1/31/2010 6:59 PM (GMT -7)   
Robin, thanks for the encouraging words. Hope I can feel and write something that great Aug 3 this year!!

Even 5 months is quite wonderful compared.

Hope you had a good celebration about the whole experience.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/31/2010 9:04 PM (GMT -7)   
woo hoo! glad you are happy! And even the annoying things arent that bad, lol.
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-


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/2/2010 5:19 AM (GMT -7)   
Robin,
You have such a beautiful way of expressing yourself and are an amazing woman ~> Smurfette! smurf I'm so glad that you kicked UC's butt and are enjoying your new, healthy life! You are such a great encouragement to us all! Happy Anniversary!!

Hugs,
Cece
P.S. - M9 drops rock! yeah
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.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/3/2010 8:27 AM (GMT -7)   

Oh, and I forgot to mention...

My family practitioner is now my primary again and I finally went to see him before Thanksgiving b/c of bronchitis and all that jazz...he prescribes antibiotics and one medication that is absorbed in the colon!  Hhahhahahhahhaaahhhaaa!!!!!  turn   They were honky pills too and for two days I simply could not figure out what I had ate that was causing the cramping and all...then finally...whu-bam!  Two pills finally shot through (sorry for the details) and I called his nurse and explained that being a permanent ostomate I cannot have such medications  smilewinkgrin   of course I asked for this info to be added to my chart, then suggested that maybe they make little notes on other ostomates charts, as my doctor is going to start referring some of his patients to me for counseling...IBD and ostomate patients. 

Anyway, just thought that was funny...painfully funny!!!!  tongue

Okay, well I am off to have a...in Alexander's words...a "terrible horrible no good very bad day...I think I'll move to Australia!"   (work meetings today that are stressing me out already and I haven't even left town yet!)

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


damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 2/10/2010 9:53 PM (GMT -7)   
Hello Robin i would like to say good on you for having such a wonderful and positive outllok o ur life!!!! Not many people are as positive about there ostomies as you are!!!!! Keep up all of the good work you are doing.Again i say GOOD ON YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 
SINCERLEY,,
BEVERLEY...............
Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
Strive to be a success but rather to be of value!!!!!!!
 
Dont count the day's,make the day's count!!!!!!
 
No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     

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