Reflections on being the wife of an ostomate.

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Tiggy3
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/22/2010 6:56 PM (GMT -7)   
This might be a terribly long winded post, so my apologies in advance for that. However, seeing as we're coming upon the one year anniversary of my husband's surgery, I figured it would do me some good to get all my thoughts written out. This heartfelt rant is the result. For those who make it to the end, thanks for reading. :)

Tyler could have been dying for all we knew. For weeks he had been sandwiched in between elderly people with UTI's, epileptics with conduct disorders, and other cases that no matter how unpleasant, seemed more hopeful than him at the local general hospital. My beautiful, strong man seemed so small and weak in that crumpled and sweat stained gown; eyes that couldn't hide their despair and an I.V poked into his arm with a steady supply of prednisone and synthetic nutrients to the point where the tubing may as well have been an extension of his body, some kind of tubular, rubbery apendage. Even after he'd lost 20 pounds in the first two weeks of his colitis flare up, and even when he couldn't breathe deeply without a wave of cramping agony causing his face to flush and his mouth to tighten into a perfectly straight line - we still didn't realize how serious this all was - no. It was only when his trembling innards failed to respond to the usual treatment that we stopped to consider the gravity of the situation. All the treatments which had usually worked so well in the past were suddenly rendered positively useless; prednisone infusions may as well have been saline solutions, and even a very expensive experimental I.V infusion wasn't doing the job this time around.

The love of my life lay before me getting weaker with each passing day. And from the time I got off work to the time when visiting hours were close to being over, I watched him languish before me; what was once a vibrant and bold creature had been diminished by a near constant loss of blood, and the kind of sorrow that comes hand in hand with hopelessness. At that time I would have done anything - spared no expense and no dignity to have him well again and with me at home. I remember a few sleepless nights where I layed in bed and literally begged God to give me some of his pain, so that he might at least find the strength to see a brighter future.

Surgery wasn't something he entered into lightly, and it sure as hell was NOT a choice. If you put eventual death from toxic megacolon to the left, and put an ileostomy to the right - is that really a choice? Life or death - there is no argument to be had. You choose life because that's what humanity does and indeed, that is what you owe yourself. You side with life as the ultimate tribute to what you were before your colon turned on itself and put this nightmare into motion. At that time among our supporters (bless their hearts), we also had our detractors who found it despicable that I, as his closest confidant, could ever agree with him that surgery was the best option. In the state I was in at the time, their words were like little shards of glass smashing against my internal resolve. How could I "allow" him to be cut open and quite literally turned inside out? Were we sure that all our options had been exhausted? Wasn't there something I could say or do to change his mind? I kept hearing the same tired concepts that sounded so reasonable coming from the mouths of perpetually healthy, intact persons: "Oh, but he's so young!" and of course, "Are you aware of the rate of post operative infection in people who have this kind of abdominal surgery?"

They didn't consider that no one took this more seriously than we did. And even more deplorable, among those who weren't supportive there wasn't a single soul who had spent as much time with him as I did, and thus couldn't even begin to imagine what kind of torture he felt in the dead of the night when the cramps were at their worst, and there wasn't a thing that could be done about it short of the administration of narcotic pain killers - which are notoriously bad for the bowels.

So he had the surgery.

Upon opening him up, it was found that he had the worst kind of ulcerative colitis, pancolitis. His entire colon was diseased and would have to be removed, making him the recipient of a colectomy. I still remember vividly the entire process from my far removed perspective; I spoke to him briefly just before they wheeled him into the operating room, barely able to conceal the shakiness in my voice when I told him I loved him and would be there for him when he woke up. The most intense portion of that day came in the evening, when my father and I made our way to the hospital in order to wait for him to be discharged from the recovery room. What a long four hours that was, where all I could to do keep some semblance of sanity was fiddle with an endless array of word puzzles from one of those drug store activity books, and humor a patient who insisted on talking to me about his many trips to Mexico, and how the medical care is supposedly just so much better south of the border. Good grief, surely this was purgatory. Eventually, this limbo did come to an end when I saw Tyler, in a drug induced state of a blissful stupor, wheeled back to his room to convalece after the trauma of the rather extreme surgical procedure he'd just endured. He was awake but not lucid when I spoke to him briefly, leaning over his bed just to relate the good news, "Tyler, the colitis is gone, the operation was a great success, and I love you."

Recovery wasn't easy.

Between waging war with a rather nasty post operative bout with ileus (I nearly died when I saw that awful nasogastric tube pumping acid out of his stomach) and a somewhat anticipated post operative infection (for a good few weeks Tyler literally had a gully formed around his surgical opening to allow pus to flow free),we were stepping on egg shells for a while. But, by the grace of God or maybe just pure luck, slowly but surely that strong and vibrant human being came back to us. Initially after his return from the clutches of colitis and subsequent operation, the best I could do was keep him comfortably proped up in bed while I spoon fed him the tiniest bits of yogurt and other very soft foods. In the time that he was hospitalized, his stomach had shrank considerably in size, and he was understandably weak in general. But his courage and conviction were steadfast, and with each little walk we took from our bedroom to the living room and back, his muscles rebuilt - and his confidence came shortly thereafter. In the space of two months, Tyler was back at work, and it was around that time that I was finally able to breathe again; just relax and take comfort in the fact that the worst was over.

It's now nearly one year later, and while my love for him hasn't changed, my admiration has seemingly grown in leaps and bounds. People sometimes hint at their curiousity as to how we relate to each other now that Tyler is lacking a colon and must rely on an ileostomy in order to elimate his food waste. The reality is, and people always look at me a little funny when I say this, that I simply and truthfully love him more with his bag. Because of that little unsightly flesh colored parcel hanging off his lower abdomen, I have my best friend and life partner back. It's somewhat comical when one stops to realize that so much love is invested in that ostomy bag; because of it, Tyler is as whole as he ever was, in the sense that while he lost an organ, he gained total and full well being. The fact that he has an ileostomy signifies that Tyler is disease free, meaning that his new lease on life is our new chance to continue enjoying each others company, whether it's during a walk on the beach on some redundant Sunday afternoon, or snuggling under the blankets on a frosty winter night.

If you ask me, as the partner of someone with an ileostomy how I personally feel about his "bag", the only honest answer would be one of gratitude. I am thankful - yes - thankful and utterly appreciative of the fact that he no longer has a colon and must eliminate waste through a bright red stoma in his side. I am relieved and overjoyed at the fact that what was once such a source of strife and torment in his life is no more. How can something that has saved him be something that disgusts me or causes me to shy away in squeamishness? Indeed, were I to feel that way, it would probably indicate some instability or at the very least a sore lack of prioritizing capabilities on my part. No way, you will never hear me complain or pity the fact that my partner now lives his life with an ileostomy. Instead you will hear a comfortable laughter when the stoma lets out excess air, and an incredulous "So what?" when someone has the shortsightedness and sheer audacity to dramatically exclaim, "But you're so young!". I won't apologize or emphatically justify Tyler's "decision" to have his colectomy. Why would I? There's no justification or explanation really needed here, except for maybe the fact that life always finds a way, and if that way is by means of an ileostomy - then so be it; celebrate it, throw a "colon bon voyage" party and tell a few jokes about it.

I am so thankful to have Tyler in my life, and like it or not, a small portion of that gratitude is directed at his ileostomy. Thank you for giving me my partner back, and thank you for giving me this opportunity to keep on exploring with him, being silly with him, laughing with him - and loving him. Always loving him, so much.



Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/22/2010 7:10 PM (GMT -7)   
I think this is written beautifully and states how so many of us feel. You really should send it into a news paper. It could open the eyes of so many people.

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 2/22/2010 7:11 PM (GMT -7)   
<- crying like a baby. So beautifully said. Thank you.

-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."


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 2/23/2010 5:12 AM (GMT -7)   
Wow, I have chills, goose bumps and tears springing to my eyes.

What a wonderfully, heart felt written post. Or short story. This is definitely worthy of a newspaper or magazine article.

Please submit this!

But most importantly, what a truly lucky young man your husband is - A. to have his health back but B. to have a spouse like you at his side.

Thanks so much for contributing to the forum! To be honest I was braced for a negative post, I have read several (not here) non supportive posts/replies on other forums over the years, one wife could not even look at her husband's "bag". We formed an odd friendship over the years, sending emails and such but finally she grew tired of the medical talk and stopped emailing me completely. I often wonder how her husband is, living day to day with such a spouse, in denial.

You are certainly not in denial and fully embrace your "new" husband! I honestly wish I could just shake your hand!

Mary/Marsky
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening

Post Edited (Marsky) : 2/23/2010 5:16:26 AM (GMT-7)


Beliveau
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 2/23/2010 5:14 AM (GMT -7)   
How powerful!

I would really like to see you submit this to the UOAA Magazine "The Phoenix". There are so many ostomates who see their altered body image in a negative light. Your post would do much to heal ostomates everywhere.

Thank you & I wish you a lifetime of blessings.
Merrill
 
Female, 54
DX Crohn's Disease 1976
Ileostomy 1980
Decade spent fighting fistulas leading to butt amputation (yes, really!)
Resection/Noble Plication 1995
 
Just call me "Barbie Butt"
 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/23/2010 5:16 AM (GMT -7)   
<----- crying too!

What a beautiful expression of your love for your husband and appreciation of how this surgery saved his life and brought him back to you a healthy man. This amazing surgery saved my life, too. I love my ostomy and thank God every day for it!

Thank you for sharing your story with us. You should definitely submit it to the UOAA magazine, as well.

:-) 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.


Tiggy3
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/23/2010 8:50 AM (GMT -7)   
Well what can I say? I'm just thrilled that everyone here seemed to get as much out of it as I did through the process of writing it.

Now that you mention it, I shall absolutely consider submitting it to the Phoenix.

Thanks so much for your kind words and for taking the time to read my thoughts on this issue which has understandably become so close to my heart.

Cheers;
 
Tiggy

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 2/23/2010 10:47 AM (GMT -7)   
I would like to see this submitted to a general newspaper/magazine as well. It would open the eyes of so many people who have no idea what it is like to go through this ordeal. yeah

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/23/2010 11:44 AM (GMT -7)   
People need access to this. Publish it. Please. It has me in tears.

I hope you don't mind if I paste a link to this from my facebook? I'd love for some of my family and friends to be able to read this. It answers so many un-askable questions.

Well done, woman. Well done.
28 yr old female
crohn's since 2004
every med.
ileostomy Jan 2010
wondering why I waited so long.

Post Edited (patientspiders) : 2/23/2010 11:52:27 AM (GMT-7)


Tiggy3
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/23/2010 3:42 PM (GMT -7)   
YES YES YES! Put it up on websites like facebook, or whatever you think would be most helpful. Naturally the ego part of my brain would hope that you'd make a footnote as to who wrote it, but the most important thing of all is that the message gets out there - the message of course being that if someone needs an ostomy, it needn't signify the end of their life (especially not their love life).
 
Everything that Tyler and I went through reminds me of this quote I once read, and while I'm kicking myself for not remembering the author, the quote goes something like this:

"Eventually you will come to understand that love heals everything, and that love is all there is."

:)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/23/2010 4:51 PM (GMT -7)   
That is beautiful cry

It saddens me when I hear how non-accepting some ignorant people can be about ostomies...I personally think my life began with the quality of life it gave me~and I am SO THANKFUL.

Please publish your short story...Reader's Digest sounds like a good place, too!!!

Send my love and admiration to your husband for living again!! He is very blessed to have you in his life.

Beliveau
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 2/23/2010 7:42 PM (GMT -7)   
Tiggy - I hope you give yourself a huge pat on the back! It was more than great - it was an extraordinary testament to your love for each other!

I would actually like to see it sent to the WOCN Association to be circulated to people working with new Ostomates. They need to read your story! Please, please post it everywhere!

Tyler is one lucky guy to have you!
Merrill
 
Female, 54
DX Crohn's Disease 1976
Ileostomy 1980
Decade spent fighting fistulas leading to butt amputation (yes, really!)
Resection/Noble Plication 1995
 
Just call me "Barbie Butt"
 
 
 


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 2/25/2010 5:11 AM (GMT -7)   
I'm bumping up this topic so it doesn't become buried.

And so others can read it.

It's my favorite post of the month Tiggy!
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening


Alittlelighter34
Regular Member


Date Joined Nov 2009
Total Posts : 24
   Posted 2/25/2010 2:59 PM (GMT -7)   
That is a beautiful story. It brought tears to my eyes because it is so similar to my story and how my fiance feels about me. I think she deals with me having an ileostomy better than I do! Thank you for sharing!
10 years of Indeterminate Colitis, and total procto-colectomy with ileostomy on 10/16/09! SO far so good!


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 2/25/2010 3:55 PM (GMT -7)   
This made me cry, too. It was a great read
My husband is so supportive of me and the ostomy, too. He never hesitated to say "do it" when surgery was the consideration. He just wanted me to be healthy and doesn't care about the bag. He helps me change it and it doesn't bother him to see it at all. I'm still not healthy but hopefully soon I will get there
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 (4/day), Questran (3/day)


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/26/2010 3:00 PM (GMT -7)   
Thanks for the insights. It was heart toughing and just tooo wonderful for words. Hope you get it published somewhere so more people can read and maybe understand. It helped me with my own attitude for the days I'm not so happy about the choice even though it was the one one I could do too.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
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
6 Grown kids, grandkids and a great husband to keep me busy


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/27/2010 7:31 AM (GMT -7)   
Your words are beautiful and your story is inspiring.  Your perspective and experience with Ulcerative Colitis will hopefull bring some ostomates awareness and understanding for those who supported us during our time of disease.  Thank you so much for your candid expressions of fear, love, and determination. 
 
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) : 2/27/2010 7:34:07 AM (GMT-7)


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/5/2010 8:09 AM (GMT -7)   
Just bumping this forward again

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/7/2010 8:37 PM (GMT -7)   
Just wondering if you have started working on getting this published yet? turn

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5920
   Posted 3/9/2010 8:09 AM (GMT -7)   
     Beautiful.  Very obvious this comes from the heart.  God bless you and your hubby and I hope you enjoy many, many long healthy years ahead together.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Flare May of 09 thru Aug of 09.  Very short remission.  Flared again Nov 1st.  Started Remicade Nov 18th.  Felt great after first two infusions.  Suffered a set back after 3rd infusion on Dec 31st.  Meds: Benicar, Colazal, Prednisone (hopefully short course), Calcium with D, multivitamin, probiotic.  Rectal meds..Proctofoam, cort suppositories....cannot retain the enemas.


Tiggy3
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 3/15/2010 1:16 PM (GMT -7)   
Hey everyone!

Thanks for the awesome feedback.

Just wanted to drop a quick note to let you know that I have been in contact with one of the editors at the Phoenix ostomy magazine and at this present time it looks like my piece will be featured in their June issue.

:)

Tiggy

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 3/15/2010 4:22 PM (GMT -7)   
Good for you!!!.....You should be really proud of it yeah

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/15/2010 4:34 PM (GMT -7)   
COngratulations! That's cool. Good that more people will get a chance to read it
26 year old female
Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
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; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
4/6/10 Going to try to go back to the J-Pouch again
Imodium (8/day), Questran (3/day), TPN 12 hours/day, IV fluids 4 hours/day


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 3/16/2010 5:17 AM (GMT -7)   
Tiggy - well that is just wonderful news!!!!

Don't forget us when you're famous!!!!
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening

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