One thing you gave up with your ostomy and one thing you gained?

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/3/2010 8:54 AM (GMT -6)   
Hi Everyone!
I have Crohn's Colitis and have not responded to meds. I have one study drug left to try and then after that we're going to talk surgery. At this point I am not opposed to an ostomy--I'm having diarrhea probably 10-20 times a day and feel like S#!T all day, can't leave my house, etc. A j-pouch at this point sounds like an invitation for more diarrhea and for the disease to return and I don't like that. I know it's not that easy and this is a MAJOR surgery but at this point I am desperate for relief.
 
My questions are:
 
What is one thing you gave up when you got your ostomy?
 
What is one important thing you gained?
 
I am guessing most of you would say the ostomy was worth it, but I would just like more information on quality of life, etc. from people so I can make an informed decision. I'm so desperate to be able to live again that I feel like I can't even make little decisions, let alone big ones!
 
Thanks in advance, everyone!smile


28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 60), 125mg Imuran, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/3/2010 9:32 AM (GMT -6)   
Okay, there is nothing wrong with a permanent ostomy; it beats refractive disease by a long shot!

But as I have told you at least once before, life with a jpouch is not life with diarrhea! I have had my jpouch for 9 years and have never had diarrhea. I have formed stools. I'm not trying to steer you towards that particular sugery but I don't want you to spread wrong information to others who might be considering it. Before you choose any type of surgery for IBD do your research. This site is a great place to start!

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


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/3/2010 9:34 AM (GMT -6)   
Thank you Sue!

I have been doing my research--don't get me wrong. I am just so accustomed to a life of diarrhea and the way things go for me has ALWAYS been "this surgery/med didn't work...that's so weird; it worked for everyone else..." and I'm just trying to see things from every angle. I am so glad to hear the j-pouch works so well for you!!
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/3/2010 11:57 AM (GMT -6)   
Well, there isn't anything that I had to give up...and I gained a life!!

I was sick for years when I had to get a temporary ileo...had it reversed...and went back to NO quality of life:( Not long after the reversal I asked for another temporary one and now I have a permanent one!! It's been about 10 years now and I don't regret it (but you knew I'd say that blush ).

Do you have a C/R surgeon that will do a j-pouch with a Crohn's Colitis dx? I know that it's done, just not by many docs and you have to fit the guidelines perfectly...I hope you find relief soon!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/3/2010 12:38 PM (GMT -6)   
Hi Ohio,
Thanks so much for your reply. I haven't talked with a surgeon yet--I have to try this last drug first. I honestly don't know if I'm a candidate for a j-pouch or not. As I said, I'm leaning more towards the ostomy at this point but I don't have enough information at all to make any sort of decision. I'm just trying to piece things together.

I'm so glad you're doing so well. Can you eat whatever you want or do you have to restrict a little still?
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/3/2010 2:12 PM (GMT -6)   
hmm the only thing i gave up, is that i will probably never wear a bikini again, however i dont think this body was gonna wear one anyway!

I have gained my whole life back,and thats worth it

i can eatwhatever,although i do notice somethings cause more gas, but its not enough to keep me from eating it.
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-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/3/2010 2:26 PM (GMT -6)   
I never wore a bikini before anyway!!!

Yes, 80sChick, i eat WHATEVER I want to...making up for years of NOT eating...but it shows:( (another reason NOT to wear a bikini)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/3/2010 7:47 PM (GMT -6)   

Hi there!  I'm just going to jump in about the bikini body talk  smilewinkgrin  I ballooned during my illness b/c of the prednisone...after the surgery I lost tons of weight BUT because I am now able to eat whatever I want I too have a body that shows that!  nono   BUT since the surgery I have been able to work out and be as active as I want...in fact, due to my "see food" diet I requested a treadmill for an anniversary gift, so I now spend lots of time with Miller (my treadmill).  Before the surgery I would barely make it through a store and would never have phathomed jogging!  LOVE IT!!!! 

But you know, the most amazing part is feeling that IT is gone.  No more.  Though the surgery pain is definitely not fun, I thought it was well worth it because I was happy to have the surgery pain in place of the UC pain...mostly because I knew the surgery pain would eventually go away.

Also...there are several of us on here that were in our 20's when we had the surgery and some have opted for a permanent ileostomy.  I simply wanted to be done with medical emergencies and move on!  I also had absolutely no desire to go poo ever again!  I have had Penelope (stoma) for almost 13 months and never once have I regretted her.

You're right, this is a very big decision.  It was simple for me because I was done with the whole UC thing...I was over that disease the moment it started to hurt me!  Then once it started affecting my appearance and taking control of every little aspect of my life, I decided to take control of the situation and nix that nasty disease once and for all!  So, my quality of life went from nill to none to very fulfilling!

I liked your questions...and really, the only thing I gave up was a diseased organ (and then some b/c I had the proctocolectomy wink ) and it was such a small price to pay so that I can be where I am today.

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


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/3/2010 9:19 PM (GMT -6)   
what did i give up......
the biggest thing was sickness. (duh)
and.....um.......i guess......bikini, but honestly, my pregnancy stretch marks did that in for me already
so.....i wear whatever i want, do whatever i want and EAT whatever i want
but that's what i gained
so, i guess i gave up just jumping in the shower without planning.

My quality of life is GREATLY improved. I didn't even realize how bad i felt until i felt GOOD. I was just used to being sick.
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; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

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

Post Edited (Chasblah) : 3/3/2010 8:24:33 PM (GMT-7)


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/3/2010 10:01 PM (GMT -6)   
I didn't give up anything.
I gained my life back.
Oscar (my colostomy) is the best thing ever. I love him.
 
-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Beethoven's wife
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 3/4/2010 1:53 AM (GMT -6)   
I just had my Koch Pouch removed on 11/13/09 due to a bowel obstruction by a quack surgeon.  I had it for 26 years and now have a standard ileostomy.  I give up spontaneity but
I am eating anything I want to (I still had to limit fruits and vegetables before - I emptied the Pouch with a catheter on the toilet).  I was first diagnosed with Ulcerative colitis and it has been changed to Crohn's Disease since.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/4/2010 5:44 AM (GMT -6)   
I gave up being sick all the time and gained my life back. It has been SO worth it! :-)

Cecilia
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.


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/4/2010 8:03 AM (GMT -6)   
Chasblah, why do you have to plan to take a shower?

Thanks for all of your replies, everyone. I really appreciate your input.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 3/4/2010 2:00 PM (GMT -6)   
Okay, for me.....here's the deal.   You can cry and cry and cry all you want.  But, here's the bottom deal.  I have become a multi-millionaire since my ostomy surgery.  Whas it because of it .....or in spite of it?  Who knows?  You can make all the excuses you want.........or you can step up to the plate and swing!!!!!  THE CHOICE IS UP TO YOU!!!!!!!

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/4/2010 4:50 PM (GMT -6)   
I can't remember what Chassity does before showers, but I use 3M transparent (water proof) tape around the edge of my wafer.  It just lengthens the longivity of the wafer from the external aspect.  When I showered without protecting the edges my accessories only lasted 4 days or so...but with the tape I can get 6-8 days. 
 
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


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/4/2010 5:12 PM (GMT -6)   
That's a good question....did I open the shop 2 months after Oscar because I got him or in spite of him? Im thinking a little bit of both.

-Allie
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/4/2010 10:50 PM (GMT -6)   

I've always been determined to continue for a doctoral degree, and now that I have Penelope I am determined even moreso.  I now have a passion for providing therapy/counseling for individuals, couples and families living with chronic illness and experiences medical traumas.  So, I guess I've gained more than just my health but a passion, which is amazing!

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


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 3/5/2010 5:31 AM (GMT -6)   
I've lost the excuse to spend hours reading in the loo - 2 minutes and I've emptied and I'm out of there now!

I've gained everything, including a life!
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/5/2010 10:24 AM (GMT -6)   
oh that reminds me i lost my manicure time, i used to do my nails on the the toilet! Now i have to find time to do them, lol, but they actually grow and dont break every five minutes now, woo hoo!
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-


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 3/5/2010 12:54 PM (GMT -6)   
Hmmmm...let's see.  I can't sleep on my stomach anymore.  I guess that's about it.  What have I gained?  A pain free life!!!!  'Not a bad deal!!!

kitty1225
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/5/2010 2:15 PM (GMT -6)   
I had ER surgery and woke up 6 weeks later with an illiostomy. I had no previous problems it was a result of a "simple" surgery gone wrong. I have had a hard time adjusting. I empty the bag about every 2.5 hrs, it leaks about anytime I DO anything like move around or even sit for a while. So my bag is a huge hinderance to living a daily life. I have yet to change my own bag...I can not see the stoma. I am lucky to have a husband who can. Qiestions. How to change the bag when I am out in public i.e. McDonalde or another place leaking away? How do you shower? Can I do a jet tub?
Also I already had a blockage...What PAIN!!! As I eat I can not enjoy my food I am always worrying if I am chewing enough so I don't block the stoma. I can eat some items but most of the things I loved are never going to be a part of me again.
I don't know if I had a choice, I may have said let me die but I did not and am glad most of the time ... I am still with my wonderful husband and I will eventually get to see my grandkids and kids ... I amm still in a wound vac and recovering strength from the ICU time. I hope I will adjust more each day...I am emptying the bag on my own and even did it in a hospital rest room though ny husband was there to help me out. Thanks for letting me ask and vent...I am a newbee at this!!!

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/5/2010 2:42 PM (GMT -6)   
kitty1225 said...
I had ER surgery and woke up 6 weeks later with an illiostomy. I had no previous problems it was a result of a "simple" surgery gone wrong. I have had a hard time adjusting. I empty the bag about every 2.5 hrs, it leaks about anytime I DO anything like move around or even sit for a while. So my bag is a huge hinderance to living a daily life. I have yet to change my own bag...I can not see the stoma. I am lucky to have a husband who can. Qiestions. How to change the bag when I am out in public i.e. McDonalde or another place leaking away? How do you shower? Can I do a jet tub?
Also I already had a blockage...What PAIN!!! As I eat I can not enjoy my food I am always worrying if I am chewing enough so I don't block the stoma. I can eat some items but most of the things I loved are never going to be a part of me again.
I don't know if I had a choice, I may have said let me die but I did not and am glad most of the time ... I am still with my wonderful husband and I will eventually get to see my grandkids and kids ... I amm still in a wound vac and recovering strength from the ICU time. I hope I will adjust more each day...I am emptying the bag on my own and even did it in a hospital rest room though ny husband was there to help me out. Thanks for letting me ask and vent...I am a newbee at this!!!

Ugh. I'm sorry this has happened. It's hard enough to learn to accept the ostomy when you have planned for it.
It seems a lot of people use a waterproof tape to shower. I can't shower unless I am changing everything because I have such problems with mine. Do you have an ostomy/wound nurse? She/he should work with you to get an appliance that fits and that you can deal with and teach you how to do it so that you aren't leaking all the time.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to hold out as long as possible until we can try the next surgery
Imodium (8/day), Questran (3/day)


kitty1225
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/5/2010 4:01 PM (GMT -6)   
I do have a nurse and they have done what they can...I like a shower each am guess that will change. I do 2X a week w/ assistance right now. I was a stomach sleeper, not now though some have said try it ... my luck i would rip off the bag!!! Well, I adjust more each day though an employer called me and I had to explain my recovery timing...he has been waiting since Dec. 18th. Well, I need 3 more classes first and that is on hold at least till next winter :(
Thanks for responding at least Ido not feel alone!!!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/5/2010 5:00 PM (GMT -6)   
Kitty1225~welcome to the forum! I'd like to suggest that you start your own thread so we might be able to help you get some relief...you are not alone in adjusting and there are some that might be able to offer suggestions.

If you could, let us know what type of stoma you have (short/long or any characteristics) and what products you use. Is it permanent or temporary? Do you know where in your small intestine it is located? Are you using any meds to thicken things? Is your Wound Vac located near the stoma?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 3/5/2010 7:45 PM (GMT -6)   
I have to put on a sureseal b4 the shower. Well, i don't HAVE to. i can shower without one, but don't like to wait for things to dry. So, i'll have to lay out a new pouch for afterwards, or get the stuff together to put on after the shower (if i shower without it). It's not SO bad. but....planning :(
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; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

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

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