Husband having colon rectum removed...what can I (spouse) do to help/be prepared?

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sg2004
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/22/2009 2:47 PM (GMT -6)   
My husband is only 25 years old and is having his colon and rectum removed in a few weeks due to severe pain related with Crohn's disease and given that we have tried EVERYTHING and nothing is working.  Does anyone have advice for how I help him through this, things that have been helpful to you, things that can make this easier on him etc.  

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/22/2009 4:10 PM (GMT -6)   
Though, I'm now 49 years old, I was 28 when I first got my ostomy. I thought my life would never be the same again, and I was right.......it was much better!!!
Just like any surgery your husband will have to deal with some pain for a while. But, having Crohn's myself, I haven't had an abdominal cramp in over 20 years! In many ways I was born again on April 5th 1989, the day of my surgery. That being said, I would recommend going to a local United Ostomy Association meeting after his surgery and talk to others from every walk of life who also have an ostomy. Obviously, this forum is a really big help and I wish it was around back in '89. But for me, I was the most reassured when I met the dozens and dozens of people I would never have suspected had an ostomy.
 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/22/2009 7:34 PM (GMT -6)   
Well, I just asked my husband, and his response was "just roll with it"!! I know that doesn't help, but maybe his doc can get you a face to face with another patient who's gone through the same thing.

It will be difficult, but it is well worth it...my diagnosis is Crohn's, too, and I lived 10+ years before I got an ileo...I just had a proctocolectomy in Feb 2008 and I wish I had done it sooner:) Life won't be over with this surgery...just make sure he's totally okay with it before going through with it since recovery can be difficult...my docs suggested it for many visits but I didn't do it until I was ready mentally!!

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 6/22/2009 8:31 PM (GMT -6)   
the BEST advice I got was to line up daily help to do laundry, cook, and keep me company during my recovery. My husband was awesome but I was very weak. Truly, we needed the help! With their help, my husband could concentrate on me and on his job--he also had to miss very little work.

My folks and his folks came and cooked meals. They also stuffed the freezer so we could just pop things in the microwave. My folks and my brother did lots and lots of laundry. My brother kept me company while my husband went to work, helped me grocery shop. Both our dads helped pick up medical supplies and prescriptions. My brother and sister took out garbage and recycling. My dad changed sheets and my mom made sure we had a stocked pantry--she also helped me cook and made broth constantly. My brother and my uncle helped drive me to doctors' appointments and blood work.

BEST of luck to you both!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 6/22/2009 9:26 PM (GMT -6)   
Wait on him hand and foot!
Get his food, help him up and down, Make him drink lots of water, let him rest, make him take his pain meds, help him groom.

He may need help changing his appliance for a while after surgery (I did). Are you prepared to do that. The hospital nurses will show you how.

Let him whine and cry and curse and do whatever he needs to do to cope those first few weeks. Just let him get it off his chest.

Reassure him of your love. He'll need that.

Be patient. He is going through a HUGE life change. Be sooo patient with him.
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)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

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


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 6/24/2009 1:28 PM (GMT -6)   
I am so thankful for my husband's help. I HATE having to drink all these fluids but it makes it so much easier when he gets it for me- to my specifications: LOTS OF ICE!

He is also my right hand man when I have to change the wafer. I hate it because it takes so much time but he makes it seem like our own little procedure in a doctor's office. I think most of it is disgusting but he acts like he has no problem with it.

Always remind him how bad he was before the surgery. Just before my surgery I had to get three bags of blood just to get the strength for surgery. My guess is he's had it pretty hard with Crohn's and this is going to be hard to adjust to, but it will be way less painful!

As always, listen to what he says. It really helps me when my husband can remember things I can't. There is so much going on and so many meds that I forget a lot of things. When he remembers it, that not only helps the situation but it reminds me why I married him in the first place! :)

Good luck. Ask any questions you have. Feel free to Email me if you need to.
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Meds just stopped working so I took the problem out! No more colon and all kinds of excitement!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/24/2009 10:05 PM (GMT -6)   
I also wanted to say...let your husband know there's an army of terrific people here that are always available to answer any questions he may have as he enters his new healthy lifestyle!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/25/2009 2:40 AM (GMT -6)   
I agree with what everyone has said. Just be there for him to love, support, and help in any way you can. From bringing him food and water to driving him to doctor appointments to picking up pain meds at the pharmacy, he's going to need your help, especially during the first couple of weeks.
 
I recommend putting a plastic chair in the shower, so he can sit to take a shower. He'll be weak after surgery and it will be an effort for him to stand for long periods of time at first. But, that will improve.  
 
My husband has been a wonderful support to me over the years, and it has made our relationship so much stronger. We have an amazing bond, and I can count on him to love and care for me when I need him. So, this is an opportunity for you two to grow even closer.
 
I'll never forget the first time he saw me naked with the pouch and said, "You are so beautiful." That meant the world to me and still does every time he tells me that. Emotional encouragement is just as important as the physical help. 
 
The good news is, he is going to be so much healthier once he's not sick with Crohn's anymore. You're both going to be amazed! :) 
 
Don't forget to stop by here to ask any questions you may have and give us updates on how things are going. Good luck to both of you! 

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.


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 7/4/2009 1:03 AM (GMT -6)   
Make sure that you get support for yourself. It is very hard to be a care giver. Find people who will help you out and give you a break from care taking time to time. Go to a movie or eat out with friends once in a while. This will lead to less exhaustion and frustration on your part.

Also, establish an exercise routine for yourself and stick to it.

Donnaeil

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 7/4/2009 11:57 AM (GMT -6)   
Yay!  I'm actually very excited for him!!!  You know, if the pain from the surgery starts to consume him simply ask if he can distinguish the surgery pain from the CD pain.  I had to do that frequently and just feeling the UC gone made me cry.  It still makes me teary.  Not a day goes by that I do not appreciate having that pain gone.  It's amazing!!!  So, I am very excited for your husband b/c he's taking control of a very controlling disease and getting his life back!!!  Whoo-hoo!!!!!
 
I have to second the suggestions regarding the plenty of rest and plenty of fluids.  I struggled drinking enough water, but have found that by adding flavor to my water keeps me motivated to drink over 100oz a day.  Silly isn't it?  We buy tons of the Crystal Light water bottle flavors.  I like the wild strawberry b/c there's caffeine.  However, I add just one package to a super large cup that holds up to 44oz.  Normally I just fill it to 35-40oz, but I drink 4-5 of these cups a day.  I also use a straw.  I know they say a straw adds air, but I don't care.  I'm getting my liquid.  The cups I use are the 44oz clear plastic ones from QuikTrip.  Then the straws I use actually came from my hospital stays and the cups they send home.  : )  The cups got tossed (I don't necessarily want the visual reminder of my experiences) but the straws are awesome!
 
When it comes to the foods he can eat, really the only limitations would be veggies like broc/caulifl., corn, green pepper, and things that may have a firmness to them...like stir fry veggies.  I would advise him to get used to his ileo and try the veggies after a couple months.  It seems like many of use are getting blockages right now b/c we can't help ourself with the corn.  Darn summer months and scrumptious fresh veggies!!!  My deal has actually been the fresh green peppers.
 
Also, the more water he drinks the more liquidy his output will be.  I personally feel this may be a better situation while he's getting used to emptying and all that jazz.  I would also suggest a two-piece appliance for a month or two until he's got the hang of have the ileo.  I can't do two-piece anymore b/c I have an 18 month old son who climbs up me all the time, and I'm just way to active...it'd be my luck that the darn bag goes flying off b/c I'm just too rough. 
 
Uhm...really, this is going to be a life changing experience for everyone around you.  Your husband will be faced with yet another identity issue, so please be patient with him and offer your complete support.  I also think that if he were to get on here and ask questions it may help with his experiences after the surgery. 
 
Good luck!!!
 
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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