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Hubby had the surgery and is recovering

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Ulcerative Colitis
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Posted 1/4/2011 1:25 AM (GMT 0)

Hello and Happy New Year to Everyone

After 5+ years of trying anything and everything and taking a lot of suggestions from this helpful forum my husband finally made the decision in June to go ahead with the surgery.  His quality of life had deteriorated and his dependence on "supervised" pain management started to fail as well. The frequency, urgency, anxiety and just overall lack of energy and declining quality of life really took its toll on him.  He was tired of it all and just couldn't fight the fight any longer.

His surgery was on Fri 12/17th at the Mayo Clinic in Jacksonville with the hope that the ileostomy would be temporary for 3-4 months along with the initial j-pouch reconstruction surgery and the take down sugery later to connect everything.  Of course all the different scenarios were outlined beforehand that he could possibly end up with a permanent ileostomy.  7 1/2 hrs in the operating room and the surgeon did all he could but his anatomy, narrow pelvis area,  small intestines were a mess and some other complications just would not lend itself for the pouch procedure. The surgeon tried his very best. So he has a permanent ileostomy.

That was the longest 7 1/2 hrs of my life - hoping and praying that first and foremost he would survive the operation and have no screwy things go wrong...I would get updates every 2 hours and knew about 3 hrs into the surgery that it really looked like the pouch surgery was not going to be a possibility but he was trying nontheless.

Naturally we were somewhat disappointed initially but there was definitely no cancer and no chrons and with the exception of pain from healing and the incisions he was instantly amazingly out of the normal pain that consumed him.

Up walking the next day with a podium walker, breathing exercises were excellent, bit by bit various tubes removed, liquid diet, blended diet, low residue diet, ostomy education which we had already made ourselves become familiar with beforehand so it wasn't such a shock to deal with. (Various threads on here and the humor from a few gals really helped and checking YouTube and various manufacturers websites to help educate and bring us up to speed.)

One week later 12/24th he was discharged from the hospital...we stayed at the hotel nearby and waited to come home until the 27th as it is about a 3 hr drive and I needed to be nearby  for peace of mind if any complications etc plus I wanted him to heal a bit more before driving him home.

We are really doing very well.  For him and for us it was the right thing to do as it was just not responding and improving at all and bit by bit was making a mess of our lives and basically keeping him hostage in his own house and just needing constant rest.  Our social life for the past few years became very limited.  He would push himself I know to do some things so my life wasn't so limited too.  Our last 2 trips we took were so difficult - travel day to and from was always so unpredictable and filled with anxiety.  Even golfing on Tue and Thurs was an off and on thing and when he would play it wasn't fun and would wipe him out.

We have skilled nursing services coming in to make sure he and I are totally in control of changing the wafer and doing very well with it.

In a few weeks back to see the surgeon for a follow up.  At the moment getting stronger and stronger every day and the discomfort from the surgery is less and less.  His happy go lucky personality is back and not in bed all day anymore as the healing is going very well.

The most important thing for him is no more 20-30 trips to the bathroom, constant pain and constantly feeling lousy is now gone and the minute he gets in the car not needing to find a bathroom here and there along the way to whereever we are going.  As with many of you, you know how distressing that is especially when you need to try to find a bathroom and one is not nearby.

His daily 3-5 trips a day to the bathroom now only takes a few minutes and he's fine for the next 4+ hours or so.  As time goes on I am sure it will get easier when we get a better handle on things as we are still learning.

Suffice to say he is now back in control of his life instead of his life being controlled and consumed by his UC.

This was a very tough decision to come to and make on his part but with the rough few days following surgery behind him, he and I are glad that he made this decision.  No regrets.  Certainly the j-pouch finale would have been nice but it wasn't meant to be.  There are too many positives in the whole scheme of things now so no time to dwell on any negatives.

I havent been on here much as we were just trying to deal with it but wanted to report back and bring you all up to date.

I truly wish and hope we wake up someday to a cure or some kind of incredible treatment/medication for those suffering and unable to get a remission going.

Any questions I'd be happy to elaborate. 

Posted 1/4/2011 2:13 AM (GMT 0)
Thank you for posting this update. Your husband is so lucky to have you!

Do you mind telling me who your surgeon at Mayo was?

It is so awesome that your husband is doing so well after such a short time after the surgery. I hope it just keeps getting better!
Posted 1/4/2011 2:23 AM (GMT 0)
Philip Metzger is his surgeon along with a super team.  I/We really like him alot and had the utmost faith and confidence in him.  From what the different nurses said...if there was anyone that could have done this surgery it was him.  He worked long and hard that day and didn't take the easy way out and had several complications to deal with too with my husband's anatomy.  I feel fortunate that my husband's life was in his competent hands.  All in all -- we are pleased with the outcome.
Posted 1/4/2011 3:15 AM (GMT 0)
Congratulations! One day the UC willl be a distant memory. Now you two can get out there and enjoy life! Thanks for sharing.

Sue
Posted 1/4/2011 3:55 AM (GMT 0)
Congratulations to both of you! I hope that your husband's recovery continues to go well and that life with UC seems like a distant memory soon. Please continue to keep us updated.
Posted 1/4/2011 4:59 AM (GMT 0)
Thanks so much for updating us! I'm sorry to read that surgery involved such complications as to eliminate the j-pouch construction. It's wonderful that you both are taking the outcome in stride, making the best of the situation, and sharing your experience openly with us on the forum. We all need to hear the truth about what is possible. Best wishes for your husband to regain his strength quickly so that you can both resume travel and other enjoyable activities. Definitely come back to us when time permits. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/4/2011 5:36 AM (GMT 0)
Thanks so much for letting us know about your husband's surgery. It's unfortunate things didn't go totally as planned, but it sounds as though your husband is now on the road to total recovery and that you both are moving forward sans his colon.

quincy
Posted 1/4/2011 1:28 PM (GMT 0)
I'll admit -- we put too much hope up front with the j-pouch end of things even though we were very aware of the potential impediments. We discussed it thoroughly and he was just so at the end of his rope and said repeatedly "I just can't do this anymore" "I'm Ready" so it was definitely time. I did a ton of research and found an angel on the j-pouch org who was phenomenal with his advice (had it done over 20 years ago) so we were ready and very prepared. So when it did not materialize I think I was more disappointed than my husband as I was so hoping he would have the opportunity. Plus our local GI was suggesting he consider colonoscopies 2X year to stay ahead of a potential cancer situation developing the longer this goes since he was in such a bad state. That was enough to help solidify the decision. He was on the highest dose of the heavy duty drugs, failed remicade and pain meds were starting to fail to do their job.

To heal from this and cheat and escape a potential cancer situation down the road was another reason for the decision. At 64 and being in relatively good health for surgery it was "why wait any longer" he felt.

The surgeon was very honest and said even if he was ultimately able to construct a pouch due to his messed up anatomy he had his doubts that it would be a good viable pouch and might fail ultimately. My husband was wondering if he waited too long and if he had the surgery a few years sooner would that have put him in better stead and the surgeon dispelled that notion due to the way he was made, put together or some kind of trauma that occurred years ago within his body that sooner would not have made a difference. So that being said it got rid of the woulda, coulda, shoulda notions in the back of his head.

All in all it made the acceptance of this ultimate outcome easier once we were so in tuned with the whys and wherefores.

Also he considers himself lucky in that he got this so late in life and didn't suffer at such a young age as so many of you trying to go to college/raise families/work etc, was healthy and strong enough to pull through a tough surgery, had a great surgeon and God has allowed us to have more years together and we can now get back to living and enjoying life. Being retired and being able to take his time recovering with no obligations in the way certainly helps.

We have been together 42 years and aside from the deaths of our parents over the years this is the toughest thing we have had to face as a couple and honestly this is not a real big deal...the big deal was watching him suffer for so long and feeling so helpless. Now that is behind us - we are a team - always have been - so this is really not earth shattering when you consider and see some of the very serious illnesses some people have to put up with. We have several friends with cancer, MS and other problems so we cannot complain in the least and count our blessings.

Again this is such a personal decision and if and when it is right for any one of you I wish you well. I also appreciate and appreciated all the support and advice I got here and all the different threads I would read to glean information from. It was such a tremendous help for me to get the insight and compassion I needed to fully understand the depth of what he was going through.
Posted 1/4/2011 1:41 PM (GMT 0)
Congratulations to you and your husband and thank you for taking the time to post your experience for those of us who might be facing "the surgery" in the future.
Posted 1/4/2011 2:38 PM (GMT 0)
I am so happy that this is now behind you and your husband. Congratulations!. Every month will now get better and better and soon you will almost start to forget what the UC life was like

Enjoy your new-found future!
Posted 1/4/2011 3:29 PM (GMT 0)
       Your husband's case is very similar to mine.  I also am 64 yrs old!  I developed ulcerative proctitis at age 52 and over the past several years became prednisone dependent...but did try 6MP (seven years), on Colazal for ten years, Remicade failed after 3rd infusion and Humira, no change after three months.

     My surgeon flat out refused to do a j-pouch on me right from the get go.  My rectum was badly diseased but you know they won't just take the rectum without the colon in this disease.  My colon only had minor diverticulosis.    I pondered going through surgery for the last two years, but when my life became such misery, I knew I had to bite the bullet.  I told my surgeon I would have no problem with wearing a bag.  With that determined, he proceeded with the surgery.  It took an hour and a half.  I'm a little different in that I have situs inversus, all my organs are reversed.  The surgeon said in his thirty years of being a colorectal surgeon, I was his very first patient with this phenomenon.  The only difference was, he had to stand on the opposite side of the bed..lol.  I had a few minor blips during my hospital stay and was hospitalized for eleven days at Pennsylvania Hospital in Philly where Dr. Fry (my surgeon) is head of colorectal surgery.  He served his residency at the Cleveland Clinic and that is why I chose him.

     It took me several months to feel 100% but BOY I am soooo happy.  The only pill I take is 25 mgm of Toprol for my blood pressure.  Far cry from the 17 - 25 pills daily I took all those years with proctitis.  I can eat anything as long as I chew thoroughly.

     The best of luck to your husband.  He will be so happy he made this decision.  God bless both of you.  By the way, my hubby and I will be married 42 yrs this May!

Posted 1/4/2011 3:34 PM (GMT 0)
wow love support you all have, i have a friend under the mayo hopsital who i speak too on the bowel unit, and i am in uk, small world x
all the bestx
Posted 1/4/2011 4:14 PM (GMT 0)
Glad to hear that he's doing well and it's awesome to hear that both of you are in such a good place mentally, despite surgery not going the way you'd originally hoped!
Posted 1/4/2011 8:48 PM (GMT 0)
Christine I'll be reading your post to him. As I said I think I was more disappointed for him as I was hoping he would get the opportunity for the pouch if things were in his favor. But a failed pouch wouldn't be good either. He had complete faith and confidence in the surgeon and told him that outright prior to surgery and let him know that whatever the outcome he wouldn't have a problem accepting it. Fortunately his make up and personality is such that things just don't get him down and he is very realistic. (Thankfully I didn't marry a grouch making it more difficult to deal with all of this :-)

His appendix was not where it was supposed to be - up in back or behind his liver in addition to small intestine issues. I believe his sphincter was fine and rectum area might have been ok too...but what good there was of the small intestine there was not enough of it to bring down and connect ultimately as most of it was just so twisted, kinked, mangled you name it and wasn't coming undone either no matter what he did.

His main problem right now is the healing in the posterior area and now his back is out of whack a bit since he can't sit for long periods yet and is most comfortable laying down (thankfully we have an adjustable bed) and or the recliner. He is trying to walk more and more each day but the weak back isn't helping any but that is temporary and nothing to get too upset about. The discomfort is a "piece of cake" as he says in comparison to what he was living with. Day by Day!!!
Posted 1/4/2011 9:16 PM (GMT 0)
Thank you for posting! You have an amazing, admirable attitude. Congratulations and good luck on the next chapter!
Posted 1/5/2011 2:12 AM (GMT 0)
Another UC wife...

So glad to hear of your husband's, and your, outcome....I had been to Mayo in Jacksonville to get an opinon on where to go (surgery or a "miracle" drug)..well, surgery one out...I talked to a Dr. Picco..very good man...However, due to distance reasons, I found a good surgeon in the central florida area and will let him do the surgery on me in Feb/March depending on the outcome of a colonoscopy later this month..your husband being 64 encourages me...I am 42...

Don't be too down about the j-pouch...when I first heard about it, I thought I wanted one, but after reading about same, I am more inclined to just get the bag...due to my condition, (too long on pred), the surgeon said that he wouldn't take everything out at once as it would be less trauma and that he could remove the rectum later since mine is actually okay...

Best of luck, and congrats, to you and your husband...I'm looking forward to being UC free in less than 3 months...
Posted 1/6/2011 9:26 AM (GMT 0)
I am happy things are going so well for him. After the surgery I can see why people would want the permanent illestomy (is that what it's called). I don't think I want another surgery for some time and the bag isn't too bad so far.
Posted 1/6/2011 12:31 PM (GMT 0)
Awesome news about your husband! I can understand the disappointment about him not being able to have the J-pouch but at least he will get his life back now. I'm wishing him a super speedy recovery and may every day bring him closer to good health.
Posted 1/6/2011 2:40 PM (GMT 0)
Thank you all...the one thing that really helped was going into this with as much information as possible. The notion of "the bag" but not really understanding it and the "unknown" what it was really all about.

When he made up his mind to do this I came here and found a very amusing thread from some gals and printed it off. (It also helped my sister....another long story...she had unexpected emergency surgery 2 weeks before hubby and has a permanent ileostomy!! She named her stoma too...."gizmo". Did I ever have to kick into full gear and help her through this turn of events!!!) It also prompted me to dig down and research this fully. I made note of various manuracturers that had illustrations of putting it on, what the bag was, the different types and how to empty, thankfully there are some very willing and able helpful people out there with YouTube videos!!! Also the basic surgery and what it entailed on illustrations. I needed this as much as he did as I knew I was going to be needed to assist in the beginning when he would be recovering and unable to do it himself. I kind of have a weak stomach and it's amazing when something like this happens to the person you love so much that was a non-issue for me. Plus the ostomy nurse meeting before the surgery and those in the hospital were just amazing -- I will brag a bit....they were pleased and impressed that we were so prepared and not spooked or emotionally unprepared. Made their job easier too.

I called him into the study and we went over each and every one of these together. (He loves watching those medical shows/operations etc) and was pleased that it wasn't such a big deal and looked simple enough. The big deal was the unknown and thoughts in your own head about something you made assumptions about. It took the fear away and he said "I can do this".

The only unknown for him was after the surgery was over if the j-pouch could have been done and he did make peace with it beforehand insofar as accepting it up front if it wasn't possible. He was a bit disappointed when I told him but immediately said "oh well wasn't meant to be" and he has the "it is what it is" type attitude so that helps bigtime.

He did the total change himself yesterday with the nurse and I "supervising" now that he can stand and the soreness in his rear area and weakness in his back is almost gone. I am adept at it so if he is ever sick I can fill in and do it for him too.

So life is good again and it won't be long before he is able to do a lot of the things that have been on hold. My anxiety level will be non existent now when we go out and no longer constantly be on the look out for bathrooms and watching him out of the corner of my eye for distress.
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