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slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/19/2008 11:38 PM (GMT -6)   
Well for anyone interested I thought I would post an update now that it has been about 3 1/2 weeks since my surgery.  I had an appointment with my surgeon on Tuesday and she was rather amazed at my progress.  The only issue I have at this point is some pains in my lower abdomen, a feeling like needing to "go" the old fashioned way and some tiredness.  They are finally bringing me down off of the prednisone, down to 20 mgs and I am having some other small side effects so this could have something to do with that.  Also the surgeon pointed out that since she left some of the colon in so she wouldn't have to reconnect on scarred tissue, if I choose to reconnect, that I might have some UC symptoms in that part. 
 
I have been to a couple of my two girls softball games and both of them seem so ecstatic that Dad finally gets to come watch them play.  I am finally able to go back to church after almost a two year absence due to the disease.  I have mowed my lawn twice and I drove the two hour drive home from my surgeon's appointment.  I take tylonol for the few pains I have and adapting to the appliances has been no problem at all.  I am still testing between the Hollister and Coloplast systems, both have their own advantages.
 
I will probably not go back to driving truck over the road since my little bout with sepsis got my wife thinking what if that had happened when I was out on the road, would I have made it to a good hospital in time?  This means when my surgeon says it is OK I am either going to look for local driving work or go back to school more then likely for computer programming.  I am completely thrilled that I finally have my life back and I only have one more major decision left to make, j-pouch or not.  I have already kicked that around and am leaning toward the "sew it shut" option.  I have always had a "if it's not broke don't fix it" mentality so that probably contributes to it some along with the part about finally having control.  I have noticed just in three weeks that I have almost total quit thinking about restrooms, before that was all I thought about.  I wish I would have done this five years ago when I was diagnosed, I feel so "healthy" and "clean" inside, something I haven't felt in a long time.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/20/2008 12:30 AM (GMT -6)   
John-Great post! I wish I was as emotionally strong as you after my surgery in '89. Unlike you, it took me a while to finally realize that having an ostomy can often be a blessing in disguise. I'm glad to hear you're doing so well. Now......regarding you cutting your lawn so soon after surgery..... nono . Did your doctor say it was okay? Even though you're feeling much healthier and stronger make sure you don't over do it for a little while. But, if the doctor says it's okay, you're welcome to come on over and cut mine too!
 
Keep up the good work!

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/21/2008 11:21 AM (GMT -6)   

I think the only reason I was so emotionally strong was because of the circumstances that led up to the surgery.  I became septic and was in ICU for seven days, five of them sedated and intubated.  I had about a 10% chance of going out the front door instead of out through the basement.  Most of my immediate family made the long trips to the hospital (Mother lives 7 hours away) within days of this and the sad part is I have no recolection of any of them being there.  So I would say that I had some real drastic circumstances to judge against having the ileostomy.  That made the ileostomy not seem so bad and I was also house bound for the last four or five months so anything was better than the life I was iving at the time.

I have to confess that the lawn mowing was all done on a riding mower.  I had my daughter to do the trim work with the push mower.  As far as letting my surgeon know, that is why my wife makes sure she goes to every one of my appointments.  She makes sure there is someone there to "tattle" on me.  She also let the surgeon know that for our 10 year aniversary, just one and a half weeks out of surgery, that I cooked and ate bacon wrapped bratwurst and a jalapeno treat that is called an Atomic Buffalo Turd.  My surgeon just laughed and said as long as it made it through I must be OK.  The part I liked the best was that I didn't have the ussual "burn" the next day that I normally would have had before, LOL.  She said the mowing was fine too as long as I stick with just the riding mower for at least the next three weeks.

I am just totally amazed at how much healthier I feel now even though I am still recovering and am no where close to 100%.  I had no idea how sick UC had made me.


Total Colectomy with End Ileostomy May 27th, 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/21/2008 9:04 PM (GMT -6)   
it is amazing isn't it? i think we all forgot what it was like to be healthy

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/22/2008 7:31 PM (GMT -6)   
summerstorm said...
it is amazing isn't it? i think we all forgot what it was like to be healthy
And the sad part is it is so subtle that we think we are just making minor adjustments to adapt so we think WE are in control.  Truth be know the disease was controlling us.

Total Colectomy with End Ileostomy May 27th, 2008


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/23/2008 3:28 PM (GMT -6)   
John, that's so exciting!! Gives me more hope every day :) Thanks so much for sharing and I hope your recovery continues to go so beautifully.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/23/2008 8:00 PM (GMT -6)   
slim that is true, the disease was controling us! that's why i didnt' see surgery as giving into UC the way alot of people do, i saw it as takign control of UC and knockign it on its butt (pun intended!)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/23/2008 9:47 PM (GMT -6)   
John,
I am thrilled to hear that you're doing so well and are already out there eating bratwurst and enjoying life! :-) Isn't it great to feel healthy? I could tell the disease was gone the day after surgery! I also didn't realize how sick I was until I was healthy.

I have a riding mower, too, and love to cut the lawn on Saturday mornings. I like to hum the theme song to "Green Acres" while I'm mowing. tongue

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 :)


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/24/2008 7:20 PM (GMT -6)   
ediekristen said...
John, that's so exciting!! Gives me more hope every day :) Thanks so much for sharing and I hope your recovery continues to go so beautifully.

I hope I can continue giving anyone facing surgery hope.  I have to say though, I do have some problems on occasions it is just that I see the destination worth the journey.  I know that when all of the surgeries are done and my body has had time to heal that I will finally be complete rid of this horrible disease.  Right now I have some pains in my lower abdomen, manageable but there.  I also have the urge to use the restroom the old fashioned way and recently did pass some of the remnants of the suppositories I am using plus some mucous and then had some bleeding on top of that.  To top it all off I have bouts of being tired.  When I talked to my surgeon last week she said that it very well could be the UC flaring in what little tail she left of my colon.  She did this because if I decide to go through with the j-pouch she wants to be able to cut lower where she makes the connection with the pouch and have "fresh", unscarred tissue to work with.  I am also in the works of tapering off of the steroids, down to 15 mgs and will go to 10 mgs Saturday.  This is the lowest I have been without serious side effects for the first time since being diagnosed five years ago.  The last time I got off of the steroids I took two weeks off of work because the side effects were so bad.  I have to see an endocrinologist in a week to see if my adrenal glands are waking up, if not we may have to stay on some dose of prednisone for a while.
 
Getting used to "Leo" the ileostomy (I know iLEOstomy is not all that creative for naming my stoma but hey I should get an A for effort :-) ) has been a challenge I guess you could say.  Even though there are no nerves in the small intestine there are plenty in the stomach muscles so I am able to feel the movements coming through most of the time.  It also takes time to get use to the weight and counter of the bag hanging off of your stomach.  I have also noticed that I am maybe overprotective of bending at my waist.  I am not sure if I am still tender there and am inadvertently protecting it by limiting my bending or if the muscles are just harder to use because of the surgery.  All in all though with what I have been through back with the UC all of this is a walk in the park.
 
I seem to be in a minority when it comes to recovery.  I feel slightly guilty when I hear the hard time others are having as opposed to how easy I seem to have it.  Three days post-op I was headed home.  I am not kidding I got out of recovery around 6 p.m. on Tuesday and was checking out of the hospital at 3 p.m. on Friday.  My bowel woke up Wednesday morning so less then 24 hours post-op actually around 12 hours (maybe less, woke up with tar colored stool in the bag Wednesday).  I had no problem progressing through the stages of food (clear liquid, full liquid, semi solid to solid) with no problems such as nausea or sickness.  Tapered off of the pain meds quickly and was able to change and empty the bag with confidence thanks in part to everyone on this site talking about it prior to my surgery and the other part was the research I did prior.
 
I am sorry this turned into a poorly written novel but I hope you can see that it is not all roses but I feel it is worth it to distance myself from this disease.  A year ago I would have said there was no way you would do a colectomy on me and now when faced with the decision of j-pouch or permanent ileostomy I am leaning toward keeping "Leo" because he is so easy to take care of and for the first time in fifteen years I decide when to go to the bathroom.  If there are any questions you have ask away and I will do my best to answer them.
 
Flchurchlady, I really enjoy mowing my lawn too.  I don't go as far a humming theme songs but to be outside is awesome, something I rarely did the last six months.  Being able to eat virtually anything without worrying if it will cause a problem is real nice too.
 
Summerstorm, I noticed that many people call it "giving in to UC" or "the last resort" with surgery and now that I have had it I say it is nothing of the sort.  For my situation it was the "only" treatment.  Unfortunately people have a misconception that your life is over with an ostomy but it is actually opposite for me.  I can't tell you how many times I have heard "but you are too young to have an ostomy" (I am 38).  Finally I have started getting snippy with people and respond with "so I am too young to have my life back?"  They don't know what to think but it seems that the ileostomy is a heck of a lot less restrictive then the UC.  I did come across this list of "myths" today thanks to another board I am on so check it out if you like.
 
John

Total Colectomy with End Ileostomy May 27th, 2008

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