Hello All - an Old UC Member here getting ready to join you

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schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 1/7/2009 8:01 AM (GMT -6)   
Hello Everyone,
 
My name is Bob, although everyone over at the UC board calls me Shrek-Chewbacca (because I am 6'9"tall and hairy from my eyebrows to my toes! hehe).
 
I have had UC for 10 years now, and was in remicade full remission in 07 for about 8 months.  Otherwise, I just managed.  I am 50, and also a diabetic.
 
Last year I had surgery for something caused Charkot Disease (from steroid use - not the diabetes actually) which is a form of Osteoporosis of the bones of the feet and lower legs - they disintegrate.  I had surgery in March and of course had to stop the remicade in January for thqat.  Needless to say the flare came back with a vengence - never worse.  Since I had both legs surgically fused and stabilized with artificial bones, joints, rods and bolts - I was hospitalized for about 7 months.  During that time, I had MRSA complication in one foot requiring tissue transplantation and 7 more surgeries - very very painful.  But the worse part was the UC - and needing an aide to help me with a bedpan 20+ times a day.  Needless to say that didn't work out too well given the shortage of nursing aides.  That was the worst part of the surgery.
 
Now I have been back on remi, but in some cases, once stopped, it doesn't work again - that seems to be my case.  And I am looking at four more leg surgeries this year which will make me go off it again anyway.
 
So, it is time to say goodbye to my diseased colon.  My GI has recommended a total colectomy and removal of the rectum (or is it just sown shut?).  Anyway - he doesn't recommend j pouch because he is convinced I will have pouchitis with how and where my UC is. 
 
I am getting very OK with the idea of a total.  but I need to hear from you all what your experience has been - from the prep - to the time you spent in the hospital, the pain endured - and the recovery.  In short, I need a primer.  I have read some the earlier posts here and they have helped - but if I may impose on you to help me get very calm by knowinig what I will endure.
 
I was a moderator on UC for a couple of years - and we had a great group - So many new people over there and so mnay oldsters like myself seem to be moving on from that board - hopefully the new drugs are working in most cases.
 
I hope you will welcome me here.  My first appt. with the surgeon is in 2 weeks.
 
With love to all here,
bob

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/7/2009 8:27 AM (GMT -6)   
YAY for you being healthy soon! and it's great to have you here.
The rectum thing, they take it out then sew it shut, i dont understand that, i dont know how you can take a hole out, but whatever.
Honestly, the pain from that is worse than the pain from the stomach inicision, lol.

The prep is just the sameas that for a colonoscopy, but you can get through it easier cause you just keep saying, this is the LAST time i ever have to do this again!
Then the surgery itself, well you are asleep for all that, obviously, when i woke up though, i felt clean, like i could tell,even throguh my awful surgery pain anddrug haze that i was finally healthy!

Anyway you may have seen some of us say this before, but when you wake up, one of your first thoughts will probably be, what the heck did i do? That's ok though, just be prepared for that.
And this is the thing that is most suprising, or was to me anyway.
When you wake up they will have put this clear bag on you, and your output is gonna be like this nuclear green looking stuff that is going to smell worse than death warmed over, i mean it's BAD!!!! So be prepared, but it wont stay that way for long. I wish i had known that cause there i was looking at that stuff and that smell going, OMG thats what i have to deal with? Forver?
But once you start eating it will smell better, and the color will change, plus when you get home you don't have to use the clear bags anymore.
good luck!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/7/2009 8:52 AM (GMT -6)   

Bob, sorry to hear you've had such a difficult year!!  I hope this will be a start to a better one!  First and foremost make sure you TRUST your surgeon.  Ask as many questions as you need (which I am sure you know that already).  I had a full proctocolectomy and having the rectum removed was the least painful!  Like Summer already said, the incision is the most uncomfortable, but that gets better on a DAILY basis.  I did notice my "insides" move to find a new home but it was never painful, just noticeable, and it calmed down shortly after surgery.  I already had an ileo so I didn't have to do any prep but I am sure it would be just like any other...gross! 

As far as pain meds go, I have a high tolerance, but I still used the maximum dose for 4 weeks post op.  Once I had my staples removed it got easier, but I still needed them to stay ahead of things.  At four weeks it was like a switch went off and I only needed them once a day and then none at all...for me it was that quick!

Some people do have post surgery complications...I don't want to concern you...but you should definitely understand that.  They usually come in the form of an abscess or adhesion but no one is the same.  Just know they can happen, ask your doc, and know what to watch for (fever, vomiting...).

As far as an ileo, its one of those things!!!  I, personally, love mine!  It wasn't my ideal way to go through life but I HAVE A LIFE and I am thankful for it.  Go on to UOAA.or and check out the manufacturers websites.  They have a lot of information (some have pics or videos) and you can see the products out there for ostomies.  Remember that the stuff they use in the hospital is not very pretty...opaque bags are the way to go tongue

I hope we can answer all your questions.  The best thing you can do (as you said) is be calm for surgery.  I am also one of those people and I love this site for helping me prepare mentally for my surgery...nothing was a surprise...I just had a few set backs.


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 1/7/2009 9:24 AM (GMT -6)   

It's good to hear that you'll get rid of that pesky UC!  My husband and I were a little freaked out by the thought of a "bag" at first.  We're both in our mid twenties and the thought that the ostomy might be permanant was scary.  He had UC for 8 years and ended up having Toxic megacolon and not getting a choice (or a chance to prepare) about the surgery.  Life has been so much better since he got rid of his colon.  I cannot express how much better life with the bag is compared to his UC.  It's the greatest.

He recovered very quickly from his surgery. He was sitting up and walking around within a few days and 4 days after his surgery he got to eat solid foods. The only thing that kept him in the hospital longer was he got a blood clot because of a pic-line he had in his arm.

He didn't seem in much pain after the surgery.  He did express how much he liked his morphone button though.  :)  I would say he has about an average threshold for pain and he didn't take any of the oxycontin they presribed him.  Occasionally some Tylenol.  He was back to work less than a month later.  Thankfully there were no complications.

It takes some time to figure out how long your bag will go before you need to change it.  We've had a few accidents while at a friend's house and in the middle of the night.  I would think that is the only down side to the whole thing.  We solved those problems by setting an alarm halfway through the night that he gets up and goes to the bathroom.  We also keep an extra bag in our cars just in case of a leak.

I have never noticed any kind of a smell related to it either.

After what you've been through I think this surgery will be a piece of cake.  You won't even need to get up to go to the bathroom after the surgery.  No more bedside commode!

Good luck!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/7/2009 9:28 AM (GMT -6)   
Well put Ohio. I don't know that I have much more to add... I think you and Summer covered most of it.

Bob -- Are there any more specific questions that we can chime in on for you? I think once the recuperation process is over, you will definitely Feel Healthy and be able to live a normal life, even with your ileostomy. I've had mine for 24 years, Shaz has had her's for 33 years. There are several old timers here.... so ask away. And welcome to this forum! We are a very caring, compassionate group of folks.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/7/2009 9:59 AM (GMT -6)   
Just wanted to say hi, and good luck with your surgery. Sound a bit like my daughter with all those complications and hospitalizations. Keep us posted.
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/8/2009 9:20 PM (GMT -6)   

Bob, welcome to our little corner of the world. I'm sorry you've had so many troubles, but am thankful there's a permanent solution to your UC problem. After what you've been through, an ostomy will give you freedom from so many things.... from having to be near a bathroom, from being sick, from having to take any medicine... the list goes on. Soon, you'll be UC-free!

Having an ostomy is so much better than being sick. I honestly forget it's there! Going to the bathroom the natural way is so overrated, especially after going 20+ times a day! I've been there and know how awful that is. Plus, no more tooting! smilewinkgrin

The surgery is no walk in the park, but it's only for a short time. They'll give you excellent pain meds to get you through, and you'll be up and at 'em in no time! Good luck with your appointment, and feel free to ask us any questions!

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 :)

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