New member! Husband is having total abdominal colectomy and ileostomy today!

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PairODachs
Regular Member


Date Joined Jul 2011
Total Posts : 35
   Posted 7/1/2011 12:23 PM (GMT -6)   
Hello!

I have never posted here before, but leading up to today, I have been reading many encouraging posts on this message board.

I met my husband in 2002. At that point, he had been diagnosed with Ulcerative Colitis for 2 years. He had mild/moderate flares while we were dating which were primarily treated with Prednisone. We got married in 2007. His symptoms were basically in remission at first, but became more severe within a year of our wedding. He was hospitalized in 2008 for a blood transfusion due to his hemoglobin levels being about 6 (yikes!) Since then, we have run the course of all medications, even the "big guns" and a clinical trial. Nothing has put him into remission, not even 70mg doses of Prednisone. He has also has two more blood transfusions. In the midst of this, his diagnosis was changed to Crohn's Colitis, though he and I still believe he has UC because there has never been involvement anywhere other than his colon.

In April of this year, after 3 1/2 years of illness, my husband decided he wanted to have his colon removed. His quality of life is non-existent- he's been lucky if he can get out of bed and go to work at all. So, today's surgery is not a bad thing, though it will be a big change for sure. However, we believe that nothing can be worse than the sickness he has endured.

I have read a lot of stories about people saying that they can get back to all kinds of activities after their surgery- we will be happy if he can DO activities after his surgery! Since he has not been able to do anything without a bathroom nearby for years, he will be very excited to get out and enjoy life without the constant pain and worry his illness has caused.

Just looking for a little encouragement, advice, etc. All is welcome, and I am glad to be here with others who have gone through the same.
Husband was diagnosed with UC/Crohn's Colitis in 2000 at 14 years old. Met husband in 2002, married since 2007. :)

Meds: Anything and everything. The list includes but is not limited to Methotrexate, 6MP, Humira, Tacrolimus, Remicade, and large doses of Prednisone. No periods of remission since 2008.

Total abdominal colectomy with semi-permanent ileostomy on July 1, 2011

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 7/1/2011 1:19 PM (GMT -6)   
Welcome to the board, and I hope the surgery goes smoothly today. I'm thinking of you.

My experience is that once I was ready for surgery, I pretty much never looked back. When I was done, I was done. It's a big deal and it'll be hard for a while, but it is so, so worth it!

Advice for after surgery -- well, a lot of people are going to say it, but walk, walk, walk. It'll feel really hard at first, but it really makes him heal faster. The output at first is green and slimy and disgusting -- won't always be that way, it's bile; when he starts eating it won't be as bad.

Also make sure pain is controlled. I don't know if he's having an epidural or a pain pump or what, but he should not be in a lot of pain from the surgery. Speak out if he is.

He will have all kinds of tubes coming out of him when he's done, that can be scary. I had a JP, which is something to collect fluids -- looked like a plastic lemon shaped thing filling w/Hawaiin punch, a catheter for urine, and assorted IVs.

The first night I couldn't even roll over w/out help, but I got better pretty quickly.

I'm not sure how much he's been in the hospital, but it's nice to have earplugs and/or a music player, an eye mask, your own slippers and maybe robe.

Like your husband, my diagnosis has flipped around some. I've never had symptoms in my small intestine (although I've had them in my eyes, skin etc), and clinically I looked like UC, but my scopes usually looked more like Crohn's (patchy) and my skin condition biopsied as Crohn's. But then after my colon was taken out, there was no sign of Crohn's in it, and now my doc leans toward my having UC (which would be awesome if true, cause then I'd be cured). But he says that Crohn;s is probably really 10 different diseases and UC a few, and they just haven't worked it all out now.

Hang in! Surgery day can be a lot harder for the spouse....

And feel free to ask more questions.... this list is so helpful.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

PairODachs
Regular Member


Date Joined Jul 2011
Total Posts : 35
   Posted 7/1/2011 1:32 PM (GMT -6)   
Thanks for all the advice! He has not been hospitalized this year since April, when he decided to have the surgery. At that time, he was worried about a stricture/blockage, which ended up not having (Thank God!)

His hemoglobin was up to 12 at that time as well, and though it has probably gotten lower due to his flare in the past 2 months, he's doing well in that area, so hopefully he has a speedy recovery! At his consult, he was told he may be discharged Monday the 4th or Tuesday the 5th, depending on when he can hydrate himself. We live an hour away from the hospital where he is having surgery, so I am going to be commuting a bit these next few days. He does have an epidural for pain which I am sure will be a blessing.

I will definitely encourage him to get walking, and to take it slow with food and drink- which may be difficult for him, since he does enjoy eating!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/1/2011 2:14 PM (GMT -6)   
I had an epidural, but it didn't work out that well. I think it was in a little crooked, and I couldn't move one of my legs, so they took it out. But I was fine w/just the pain pump, it was well controlled.

Are you at a teaching hospital? I was there at this time of year once, and the residents all turn over on July 1 (I think that's standard). What it meant was that the new residents were eager, but very inexperienced, but they had the gi doctors in charge right there supervising them, so I think that all in all it was a good tradeoff. I'm not sure how that would work w/surgery though....

Hope all goes well.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 7/1/2011 3:40 PM (GMT -6)   
     I had a total colectomy with end ileostomy June 28th of last year.  I was 63 yr old at the time of my operation.  My surgeon would not do a j-pouch on me because in his opinion it would be too stressful on my system.  I told him I had no problem with the idea of wearing a "bag".  I was just so sick of being sick.  I suffered with ulcerative proctitis for twelve years and ran the gamut of meds like your hubby.  Unfortunately, they will not remove just the rectum.  If that goes, so must the entire colon because UC has a nasty habit of traveling further into the colon once the rectum is removed.
     Let me tell you, it was the best decision, other than marrying my hubby over 42 yrs ago, that I ever made smilewinkgrin .
     Don't expect a miraculous recovery.  It takes time.  My surgeon told me after my operation that a year from that date I would feel like a new woman....ugh...a year smhair .  I had a few complications while still in the hospital, but my surgeon, his residents and the nursing staff at Pa. Hosp in Philly are the BEST!  Or, at least one of the BEST..lol.  I received wonderful care.  After my discharge I did have a few problems...some bleeding from the vaginal area, a hematoma inside the anus (my surgeon leaves the opening), which had to be drained.  But, it still was not as bad as the suffering I had with the UP.
     Fast forward to the present.  Dr. Fry was right!!! I feel terrific, other than suffering with osteoporosis (thanks to prednisone).  My only regret was not having the surgery sooner.
     Wishing your hubby the best of health and God bless both of you.

PairODachs
Regular Member


Date Joined Jul 2011
Total Posts : 35
   Posted 7/1/2011 4:30 PM (GMT -6)   
Thank you both for the kind words and support. about an hour ago, I got the call from the surgeon that he is out of surgery and in recovery. We're just waiting for him to get checked into his room now.

The surgeon said it was "one of the worst colons he has ever seen" and that if my husband had any doubts about the surgery, "he definitely made the right decision." The surgeon was sure that, just from it being out of his body, he should feel a whole lot better right away. They had to do a traditional open incision, so hopefully that heals up well and without any complications. Husband is only 26 years old so, God willing, things turn around for him and he can enjoy many more colon-free years in much better health.
Husband was diagnosed with UC/Crohn's Colitis in 2000 at 14 years old. Met him in 2002, married since 2007. Proud owners of two miniature dachshunds.

Meds tried: The list includes but is not limited to Methotrexate, 6MP, Humira, Tacrolimus, Remicade, and large doses of Prednisone. No periods of remission since 2008.

Total abdominal colectomy with semi-permanent ileostomy on July 1, 2011

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 7/1/2011 4:33 PM (GMT -6)   
PairODachs
Just think......the whole country will be so happy for your husband that everyone will be shooting fireworks to celebrate!!!

Dan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/1/2011 5:20 PM (GMT -6)   
yep a party for him being healthy!
It's a tough recovery, but its soooo worth it! i was 29 when i had surgery and my life was horrible before hand, i did nothing! now i do everything! went to disney, went on a cruise, planning our next cruise, fixing to go out to eat with some friends, i swim, i exercise, i do all those things i couldn't do before. it's amazing to me that sometimes i am so happy just to be able to go to the store without worrying
don't worry if there are some leaks and problems at first, it's a huge learning curve, and be sure he drinks LOTS of water! i mean LOTS! it's very common to have to go back to the hospital at first for dehydration, i think most of us did.
good luck and ask us all you want!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/1/2011 5:45 PM (GMT -6)   
Hi and welcome!
I am one of those who is maybe UC, maybe CD, as well. I had my surgery at 28. Like many others, I haven't looked back since. It's the best decision ever. I may be living with a slight annoyance, but that's all it is! Most of the time I forget I have an ostomy. It's a big adjustment but if your husband (and you!) go into it with a good attitude, being grateful that it will allow you two to have a happy and healthy life together, it's really a blessing and nothing else. He will be able to do anything that anyone else can do once he recovers.
 
Keep us posted and ask us anything! Just give it a few weeks and you'll both be living new lives!! :)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/1/2011 8:10 PM (GMT -6)   
Welcome, PairODachs! My first dog was a mini dachshund. She was so sweet and smart and lived to be 17. :-)

I'm glad to hear that your husband came through surgery okay and is on the road to recovery! I had my surgery 5 years ago and instantly felt better once that diseased colon and rectum were out of me.

My small intestine has never been affected, and my diagnosis was also Crohn's. After doing some research, I found out that about 40% of people with Crohn's only have it in the colon and/or rectum. It has been 12 years since my diagnosis, and I'm hopeful that it will never show up in my small intestine. So far so good!

It is important that he gets up and walks a couple of times a day, so that his small intestine wakes up and starts moving. Once that happens, he'll get gas and output in the pouch and can start eating soft foods. You might want to pick up some chewable Gas-X for him to have, just in case he has some trapped gas, which is more painful than the incision.

Also, it helps if he presses a small pillow against his stomach anytime he has to use his stomach muscles to roll over in bed or get out of bed. He will walk hunched over at first, but will straighten up as the incision heals, which takes a couple of weeks.

Please keep us posted on how he's doing, and feel free to ask any questions you may have! Wishing you both all the best.

Cecilia

P.S. - Your dogs are so cute! I have two German Shepherds, and the female is named Mimi. smilewinkgrin
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.

PairODachs
Regular Member


Date Joined Jul 2011
Total Posts : 35
   Posted 7/1/2011 8:52 PM (GMT -6)   
Thanks everyone! I should mention- I'm Kirsten (NOT Kristen) and my husband is Matthew.

Matthew is doing well- he's pretty sleepy, and we left him in his hospital room around 9pm so he could get some rest. He says he has no pain and the surgeon told him to get up and walking tomorrow. He had a few ice chips today and the surgeon said he can have broth and jello soon. They said, if he has a perfect recovery, he may be out by Tuesday/Wednesday. We will hope for the best! :)
Husband was diagnosed with UC/Crohn's Colitis in 2000 at 14 years old. Met him in 2002, married since 2007. Proud owners of two miniature dachshunds.

Meds tried: The list includes but is not limited to Methotrexate, 6MP, Humira, Tacrolimus, Remicade, and large doses of Prednisone. No periods of remission since 2008.

Total abdominal colectomy with semi-permanent ileostomy on July 1, 2011

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/1/2011 9:24 PM (GMT -6)   
Hi Kirstin
 
Happy to hear Matthew is out of surgery.  I know it was a long anxious day for you.
 
It will be a bit rough these next few days but he will notice a difference with the surgical and healing discomfort that will be so much different than the UC suffering he has been dealing with.
 
Definitely stay ahead of the pain while in the hospital.  There is no reason to be in unnecessary pain while he is there.  Definitely walk as much as possible.  My husband had the same surgery last Dec...6 months ago.  The higher podium type walker made walking much easier to contend with.  I also walked with him and freed up the nurse's aides time.  Once they got him out of bed and various tubes taken care of I took the time to walk with him.
 
Diet will be slow - definitely take it slow too.  The IVs make it so he won't be super hungry these next few days anyway.
 
The big things are....walk, walk, walk,   a  lot of water/fluids and when he does get into solid foods....chew chew chew.
 
Protein is very important as that speeds up the healing.  Tough to get all the protein in with the appetite level not there.  The slimfast powdered shake with 8 oz of milk is 15 grams of protein.  One or two of those a day really does help when you can't consume the protein otherwise.
 
I helped him and still do with the changes.  He can do it on his own and has.  Most times I am around and the extra pair of hands makes it go faster and more efficient for us.
 
There is a definite learning curve - we are not experts but doing well overall.
 
There is a ton of info available here and many willing people to help so just ask when you get stuck.  Hopefully you and he will get good assistance and education from your ostomy nurse in the hospital.  Don't be in a big rush to get out and get home...if he needs the care and attention and he isn't ready--- don't go home too soon either.  They don't keep you longer than necessary anyway.
 
Good luck - you will both be amazed overall how fast he is going to feel so much better as he heals from the surgery.  The constant urgency and frequency and anxiety from the UC will be gone.
 
There is a trial and error period finding the right appliance - how often to change etc. but it honestly is an easier situation to deal with than the hell the UC put him and you through.
 
We are so enjoying life once again and have been for a few months and are doing more and more now.  The ostomy is now a part of my husband and something that gave him a new lease on life.  It is not a choice any one of us truly likes but in the overall scheme of things it was a choice that needed to be made as he could no longer cope and continue -- the same as your husband.
 
Good Luck and keep us informed and let us know anything you need help with.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/2/2011 6:21 AM (GMT -6)   
Adding to what Ron said.  My husband is back to his regular golfing schedule of twice a week.  We are going out socially and enjoying our friends once again.
 
Not to alarm you but after the surgery his right shoulder hurt for about a week.  I think it has something to do with the air/gas that is used during the surgery.  Also his back was in a very tender state before the surgery and all the lying in bed and less activity even though he walked a lot it took him a few months before it got better.  He was going to inquire about seeing a chiropractor but once he got out and played golf it got better and better.  So the exercising WHEN HE WAS BETTER AND STRONGER and able to do so really made the difference.
 
You will be so totally amazed day by day as he progresses.  I know I was.  I have my "old" husband back.  His easy going nature and pleasant personality have returned.  Even with all his problems prior to surgery he made a real effort to be pleasant but it was not easy and it definitely changed his normal personality.  It became easier and easier to just stay home and not bother going out and doing things.  We are a lot older than you two and we have a lot of living to do as will definitely be your case too!
 
Stay strong, be supportive and be there for him.  This is the "in sickness and in health" part of the deal we pledged and signed up for :-)
 
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