Hello My AWESOME OSTOMATES!!!!

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RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 4/25/2009 7:13 PM (GMT -7)   
Hi guys!!!
 
I just wanted to pop in and say HEY!!!  So, HEY!!!!
 
How has everyone been?!
 
I cannot tell you how wonderful it's been for me and my family.  We are out of crisis and just settling in to a nice (hectic) routine.  : )
 
Since being up and active I have started back to work full-time (I provide in-home counseling for the state and work 45 minutes from home), I started back to another little job I do periodically and am enrolled for the summer session at school!  : )  I have began a healthy lifestyle including low calorie diet and daily workout routine...newly starting a kick-butt pump class at least once a week and hopefully another class once I get more limber.  I'm going to get rid of all this accumulated weight from pregnancy and prednisone once and for all!!!!
 
I am a full-time Mommy now!  I don't need anyone helping with my son so I can rest or just get something done.  I can do it all!  Well, as much as a busy Mommy of a toddler can do.  : )  We all know that accomplished days may only include a shower (hopefully) and the follow through of some chores and errands.  : )  But you know what?  I don't care b/c I can do it on my own! 
 
I've experimented with many appliances and feel that b/c I am so active and on the go, I love the Hollister New Image one-piece.  I don't know the difference between the one I'm using now and the other I tried but this one has a rubbery flange and it is AWESOME!!!  I was sold on ConvaTeck two-piece click system, but the wafer was worthless.  I am in love with the M9 deotorizer...the only food that I find a little gross is fish, but sometimes those fillets are worth it! 
 
My stoma's name is Penelope.  She enjoys long hot showers and a rinse with each empty.  : )  She also is happy that I'm drinking the above average amount of fluid during the day b/c that makes her job much easier.  Penelope complains when I skip meals and drink soda...she can be pretty opinionated at times, so when I know I'm going to be in meetings or in public I try to do what I can to keep her happy!  : )
 
Oh!  And as for my little project I'm doing on the side, I have yet to make a mock up design, but it's already been decided on what to do, so I just need to get crackin'!  Now, this may hurt my future business, but I'm going to plug this anyway.  I haven't purchased one yet, but once my tummy is flatter I think I will. There's a beautiful accessory cover called My Heat is Tied and I highly recommend you ladies look it up.  It's for intimate moments only, but absolutely beautiful!  However, once you want to invest in some beautiful accessory covers that do not look like they're from a craft mall, please look me up...in about six months.  : )  I'm just now gaining energy back and enjoying the rat race.  However, my up and coming business is always on my mind, so once my designs are for sale you guys have got to check them out!  Oh, and if you have any requests please email me, b/c I have dozens myself but you guys have needs too!!!
 
Anyway, I hope you guys are all doing well and out enjoying your lives!!!  Again, your advice and support was what got me through my decision and ultimately the most trying time of my life.  I look back and though it was a long road, it's over and already close to being forgotton.  I just have an accessory and scars from staph infections to prove that it wasn't all a bad dream.  I'm going to glamourize my scars with gorgeous tattoos.  My first tattoo is one of my rewards to hitting a lower weight goal.  : ) 
 
Please feel free to email me anytime!  YOU GUYS ARE GREAT!!!!!!!!!
 
: )  Robin
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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/25/2009 8:23 PM (GMT -7)   
so glad to see you are doing well!
isnt it great to be able to be the mommy you want to be and finallly have FUN with life!

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 4/25/2009 10:54 PM (GMT -7)   
I am so glad that I read your post tonight. Your happy words made me feel better since I have been down for a while. Enjoy your new life and family!! =:)

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/26/2009 2:17 AM (GMT -7)   
Robin,

Thanks for stopping by and updating us on your life and what you are able to accomplish now that you are healthy again. As you know it is important for others on here comtemplating surgery, or recently post up, to read what one is able to do after recovery. Thanks again for letting us know you are doing so well and have such an active life.... take some time for yourself just to relax and recharge.

So nice to hear from you. Do stop in whenever you can and chat with us.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


TheBag
Regular Member


Date Joined Apr 2009
Total Posts : 37
   Posted 5/1/2009 2:12 PM (GMT -7)   
hello robinbyrd. im a newbie as 3-27-09. adjusting as well as i can. came a cross this very helpful site found your story fantastic. tip of the cap for handling a stoma and child. double challenge. anyway you sound like a very strong person an inspiration to me. i love the name ive named my meatball junior. you put it so well when they are talkative its hilarious especially if your with people w/ a sense of humor. just had to introduce myself and say thanks.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/3/2009 9:38 PM (GMT -7)   

Hello THE BAG!!!!  : )

Isn't life interesting with an ileo?!  It definitely cuts down on the time spent in the bathroom...which I think is great, as too much of my time was spent there prior to the surgery.  : )  I love how we go from one extreme to other in bathroom time...pain (12 on a 10 scale to 0)...going poo costantly to not at all...and having to hide the pain to having nothing to hide!!!  And you know what?  I barely try to hide my accessory any more.  I mow my yard with a tight tank and it is quite obvious I have a little buldge.  I'm a little more at east for the fact that my neighbor had an ileo for over 6 months and she and her family understand my situation.  So, I flaunt Penelope in a way.  : )  I'm also very open about my accessory with family, friends and my clients at times.  Penelope is permanently here, so I figue she might as well be accepted instead of shunned!  At there are times she introduces herself before I'm ready to make her presence known, and that's alright.

Since you are so new to the ostomy world, please ask away and share your own experiences!!!

It's nice to meet you!!!

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


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/4/2009 1:22 PM (GMT -7)   
Hi Robin,

Reading your post is so inspiring. Especially after I just had to take another Darvocet to get through the rest of my work day. I'm actually looking forward to getting rid of my colon and being UC free soon. I have a question for you. I noticed you had moderate/severe Pancolitis. May I ask why you have a permanent ileostomy instead of the j-pouch? Was that a personal decision or was it medically necessary? Did you know going into surgery that it was going to be permanent?
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 5/4/2009 6:58 PM (GMT -7)   

Hi G-Sun!  : )  That's fun...I like your name though, it's very pretty. 

I'm glad you're opting to beat UC and take control of your life.  I did a lot of research and online chats with those with both the permanent ileo and those with the j-pouch.  I joined j-pouch.org and met some really amazing people.  I also had a surgeon who was very frank with me regarding the pros and cons of the the permanent ileo and the j-pouch.  I suffered almost non-stop for two years.  The medications caused serious immune issues and in addition to my angry colon, I had open wounds and ridiculous pain.

My priority and attention has always been on my family.  Now that I have a child and a toddler at that, it was time for me to just run away and never look back.  The need to go poo again is not important to me.  I was traumatized by the UC.  It was also explained to me that a good percentage of those with the j-pouch will more than likely have surgery again within the first year.  Health-wise it's safe, but not as safe as the permanent ileo for pregnancy and just long-term situations.  I had so many heartbreaks with the medication failures and just overall disappointment with not finding remission, I simply could not handle another failure and let down.  So, instead of trying something that may or may not work, I just wanted to skip it.  I've moved on and never once regretted my decision.  I love Penelope...I love feeling the nothingness where the pain used to be...I love having my colon gone.  : )  I love being disease free.  I can just go on and on about how wonderful life is.  It's incredible!  I think the toughest part of this adventure is finding an appliance that works for you.  I'm on my fifth or sixth trial and have just ordered a good bunch of the one's I'm now using. 

Tip:  Go ahead and purchase a bottle of the M9 deotorizer from your medical supply store.  You'll want that while in the hospital.  The bottle says certain amount of drops, but I just squirt a little in my accessory each time I empty and rinse.  It's the BEST!  I also suggest you bring your own pillow and blanket.  I used my sleep mask a lot because it just helped keep it comfortable.  I sleep with it every night anyway and has now become my adult 'blanky'.  : )

You'll also probably like the Eakin seals or the Hollister rings.  I'm tring Hollister's now and they're decent.  I have a couple other kinds to experiment with, so I can let you know what I feel is the most reliable. 

I wish you the best of luck and you can email me anytime if you have questions or just want to chat.  There are also the most amazing people on this forum.  I would have never made it through my experience without them.

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

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