One year on the bag

It's been a year since I got home after a total ilestomy. October 17 2007 was the day my life changed when after a year of UC I finally gave up hope of ever being healed and decided to go under the knife and get my colon taken out..

I felt good at first, of course, my trusty morphine pump that I could press a button and get the dose and kill any pain I had, but that was taken out after a few days at the hospital, I was up out of bed and walking around the ward. until one day I found I coudn't get out of bed with a while cell count of over 100,000 - a staph infection got me and I coudln't move by the end of the day.. and two months in a nursing home before I could move around with a walker. but that was a year ago.

Today I just returned from a business trip to northern Canada without a second thought. No one can tell that I have an ostemy bag on me. I've gotten so good with the bag that it stays on for about 4 or 5 days until it needs to be changed. Although I've changed my diet and I don't eat a very large dinner - actually I stop eating any food by 3:00pm each day.. and have a very large breakfast so I don't have to get up at 3:00am and empty the bag.

Fortunately, my company lets me work from home almost 100% of the time. When I have to meet customers I don't have a problem wearing business clothes and a suit. The bag tucks inside my shirt and pants nicely.. And I keep a small cup in my office to go into the lav so I can fill it with water and rinse out the bag when I empty it. These are the changes I've gone though.. which are a piece of pie considering what life was with UC. I wouldn't wish that disease on my worst enemy..

I had the J-Pouch made inside me.. When I first got out of the hospital a year ago, I was expecting to go back in after 3 months and get the reversal. But then I put it off for a month.. then two months. Then I asked my doctor what if I put it off for a year? The answer was: Nothing. I can get a reversal anytime I wanted to.. But what would life be like if I went back and had the J-Pouch connected...?

The answer I got was that I wouldnt' be much better off than I am now. I'd have to go though another recovery period. What I would pass out would not be what it was before I had UC..

So why should I bother? I'm healthy now.. I've adjusted my life to living with the bag. Can anyone tell me what advantages there are in going back for the reversal operation?

Wade,

You have adapted well to the ostomy and you certainly don't have to proceed with the next surgery. However, at some point you will need to make your temp osotomy and permanent ostomy and then also have your anus sewn shut. So, there is more surgery in your future no matter which decision you choose.

I chose a jpouch because of my lifestyle. I am a long distance hiker (100-200 miles) and a backpacker. An ostomy didn't really fit with my active life. I am happy with the jpouch but I also know lots of people who are happy with their ostomies. It's your choice!

Sue

Paula,

I am sorry you have suffered so with the jpouch. Your situation is atypical of most pouchers. I encourage you to visit www.j-pouch.org and post your problems there. There might be some people who have suggestions as to ow to improve your quality of life or at least help you decide on the future.

Sue

Wade-its great that you are doing so well and happy! that's what is the most important!
I opted for the perm ileo, casue honestly after 8 years of UC i never wanted to use the bathroom the regular way again!
I also didn't see how still going to the bathroom 4-8 times a day would help me out, lol. There were other things like the possibilty of pouch failure and pouchitis. But those are rare, and dont' happen to most people.
I do live a pretty active lifestyle, not like suebear though, she is awesome, lol.
But i do go to the gym and i have a son (3) who is a wild man, and we go ontrips and i go out with friends ever friday night. Those are all freedoms it has given me.

PJ-i am sorry i do not have any advice for you, but i hope you feel better soon and get some help.

Thank you all for your thoughts. The only person I've talked about this (other than my GI and my Surgeon) has been Mrs Wade.

When I first came down with UC, it was this creeping illness. First i thought it was common diarrhea , and for a week or so I tried the over the counter remedies to no avail. Then my internist gave me some antibiotics, and it was a month before I saw my GI. She recognized what it was very quickly and I started on the first of several medications, including the prednizone ... one of the most evil medicines created by man i think :) After almost a year of going to the ER dehydradted and sometimes spending a few days in the ward, but mostly getting a bag or two of saline I had reached the end of what my GI could do for me. I was so bad that the last time I went to the ER, the med-tech couldn't find a vein in either of my arms, and I must have been stuck abuot a dozen times before the IV worked. Even when I had the surgery to remove my colon, I had to have a central line put in my chest just below my neck.. and had 2 units of blood as my red count was low. I'd go in the ER with blood pressures of 30/50... all that seems so long ago now..

I don't think I'd be here writing to you if I hadn't had the operation.. It's that simple. Even now it's unbelievable to me that a 52-yar old man who never had been sick (seriously) a day in his life and was still at his high school weight could be taken down so fast and so hard by UC... I think also during the year of hell (2007), I was in denial about all of this thinking it would just go away .. it never did.. I'm 6' and was at 190 pounds before the UC. when I got out of the Nursing home after dealing with the staph infection I was at 133... Today i'm back to about 180 and want to stay that way..

What I'm concerned about is not about the surgery ... been there did that already.. but the effects of the poop that comes out of me If I elect for the surgery to activate the J-pouch. I've read that it's very irritating to my skin and that I'd need to put on some sort of skin cream to alleviate the irritation. One of the steps in recovering this past year was just the ability to put normal underwear back on. Those friggin depends got to be uncomfortable as heck and I was so glad to just wear normal cotton ones again. Will I have to go back to those depends if I have the reversal ? Again, because what will be coming out won't be the same as it was before, willI have to worry about accidents? Will I be able to sleep at night and mess up the bed?

God I'm sorry to have to ask these questions, but after a year of UC and dealing with krap all over the place It's just that now, I'm at a point that I can deal with it... and facing the unknown again is something that I need to decide.. and if anyone can answer these questions.. it's those of you who have been though all of this...

I think I need another year yet to decide how to end this.. if it ever really does end.. The only thing I missed this year was swimming.. which, of course, I can't do right now.. Going out to dinner also is another thing, as if I eat in the evenings. I have to deal with issues at 3am that I'd rather be sleeping.. So that's why I stop eating anything pretty much before 3 in the afternoon so my body can process it.. Also eating a wider variety of food would be good. as I've noticed that some foods use a LOT more water than others.

I know lots of questions. But I'm a long way from the day I got home and as I think of it today, a year later... was really totally unprepared for what was ahead of me.. I'd just to have a bit of guidence now as what I consider the midpoint of this adventure ....

Wade,

All the surgical choices for UC have pros and cons.  There is no perfect surgery but there is a surgery that is perfect for you and it's the one you can stand behind (no pun intended!).

I think the stories you have heard about the jpouch are the worst of the worst.  If those of us with jpouches had to live the way you describe I can promise you that none of us would keep the jpouch.  As for me, I have never worn depends.  Yes, I had some intial leaking but it resolved itself and it was minor.  Yes, I go more frequently than those with colons but it doesn't get in the way of my activities, and I am active.  If you were to opt for the jpouch, yes you would have to endure some more recovery and adaptation and it doesn't sound as if you're up to doing that.  And like I said, if you can't get on board with your choice there is no sense in pursuing it.

Sue

I agree with Summerstorm - bowling and midnight pizzas aren't out of the question. I've been bowling numerous times and had many midnight feasts as a young adult (still do occasionally) without a problem :) I've been kayaking, swim regularly in summer, ridden elephants and camels, went on a jetboat last weekend, been rock climbing, on a flying fox, rollercoaster rides, etc all without a problem.

Your ostomy shouldn't stop you from doing anything you want to do - only your mind will. YOU control your ostomy, not the other way round - don't let it dictate to you what you can and can't do!

Thank you .. thank you all for your words. and for the knowledge you have. Each day is a learning experience for me.

I had no idea I could take various medicines to control the releases out of the stoma, and how to control the texture of the releases into the bag.. It seems at times this bag has taken control of me at times. especially that the beginning when I wasn't very good at attaching it. It took a few months just to get the bag to stay on reliably.. learning how to use the various adapter rings.. the paste. the adhesive spray. but i've gotten that down now to somewhat reliable. and this last trip to Canada on an airplane was really a test for travelling. I traveled quite a bit up to two years ago.. and it seems that I've been trapped because fo first the UC. then on account of this bag. Each step seems to be a return to the life I had before UC.. one step at a time....

Reading yoru words.. It reminds me of what my therapist told me in the nursing home when I was regaining my strength after the staph infection.. If you don't try... you never will. And that's absolutely true.. I suppose it's just a matter of mentally taking over and not worrying about if this bag will start leaking..

Actually.. on the way back from Canada last week. I had put a new bag on in the hotel where I was up in northern ontario the day before returning back to Atlanta.. where I live .. so when I got to the airport. I knew I was on day two and it shouldn't have been a problem. carrying my overnight bag. and also a wheeled computer bag... picking up.. settign down. when I arrived in Toronto to change planes and go though customs. I thought I got a whiff of bag gettng off the plane. but I got off. .went though the airport.. though US customs. and decided to go to the bathroom and empty it. Yes, I saw a small leak out of the bottom and I thought.. Oh chit.. where am I gonna change this thing .. there must be a first aid place where I can lay down and change it (I carried along my supplies with me). .. but no, the first aid place at Toronto airport was closed.. so back I went into the mens's room. found the handicapped stall that's large. just stretched out on the floor inside the stall and went about putting on a new bag. Did it w/o a problem. and figured I was good for anothr flight and getting home to Atlanta.. Well. that bag decided to work for the next 4 days before I changed it.. So I suppose I've gotten that down well enough..

One step again..

From reading yoru words. I'll probably wait another year for the reversal.. I'm just not ready yet to go in the hospital again.. Knowing what will happen.. and reading that it will be better afterwards.. That's good and I thank you for sharing with me.. I think after another year I'll have reclaimed more of my life and be less bag-centric mentally... an ready to be rid of this.. which is much better than dealing with UC.. but I know it's only a half-measure..

Thank you again for the help you've given me...

Wade...

Hey Wade, I had my ostomy done the same day as yours, what a small world. My condition was alot different than most of the people on here, I had a near perforated colon and had to have emergency surgery. I have had my ostomy for a year+ now and will be goin back in for the reversal next month on the 12th. I am a long haul truck driver by trade and I have not had too many problems with my ostomy. I have had a couple of blow-outs but those can be cleaned up. My doctor said the same thing, I can have the reversal anytime I wanted. Honestly, I don't want to live with the bag for any longer than I have to, that's why I am goin for the reversal asap.

If you want the reversal, I say go for it, just be happy with your decision.

Good luck!!

Clyde01 said...
Hey Wade, I had my ostomy done the same day as yours, what a small world. My condition was alot different than most of the people on here, I had a near perforated colon and had to have emergency surgery. I have had my ostomy for a year+ now and will be goin back in for the reversal next month on the 12th. I am a long haul truck driver by trade and I have not had too many problems with my ostomy. I have had a couple of blow-outs but those can be cleaned up. My doctor said the same thing, I can have the reversal anytime I wanted. Honestly, I don't want to live with the bag for any longer than I have to, that's why I am goin for the reversal asap.

If you want the reversal, I say go for it, just be happy with your decision.

Good luck!!

You know, the first weekend I got out of the Nursing Home, I wanted to get in the car and hit the road. I'd been trapped in the hospital and rehab for 3 months and it felt so GOOD to get behind the wheel and go SOMEWHERE. I'm from Atlatna and my wife and I decided to go to the coast, so we went to Macon then on to Savannah. OMG I took a bunch of towels and all the "gear" and it was that first weekend that I learned that I wasn't trapped to my room or to the house with this bag... Now, I travel pretty much when I want and where I want.. and usually just take some tape and a few washcloths...

Something else that happens when you're sick for a year and it REALLY affects your work and obviously income. I had blue cross & blue shield and that picked up most of the doctor bills; hospital bills; rehab.. etc. The entire sickness was somewhere around $200,000, given teh fact I had 3 surgeries (one GB, one for this hugs puss thng - not a bedsore that was on my hip, and of course the Ileo..) Add up the fact that I simply couldn't work a lot when you're sick.. so 2007 really ate into our finances and savings which we had to draw on. 2008 I've been able to work and we've gotten out of the free-fall, but haven't recouped all we had to draw on last year.. and honestly, the financial aspect of spending another month or so out of work isn't something we can deal with yet.

I think after another year of the bag we'll be in better financial shape to finish this operation up.. The most imporant thing is that i've gotten back to a "normal" life, and that's not the case when you're sick as a dog and going to the ER every few weeks for a bag or two of water becuase you're dehydreated and have horribly low blood pressure.. I remember in rehab I'd see a lot of people.. and all they wanted to do was walk again. I know I was one of them.. Well the walker is in the storage room and altough I'm not about to run a marathon, I've got my health back and my strength and to the everyday person I appear to be a nomal, healthy person.. I'm not disabled in any way, but I see people who are.. and believe me. I have an understanding of what they are going though. Been there. Did that.. even for just a few months. it's such a difficult life not to be able to do things you used to do without a second thought..

I'll deal with the final surgery probably next year.. then this entire chapter of my life will be closed. and the lessons I learned from it will be part of how I approach the second half of being around here :)