got my pre-ops done!

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/23/2007 10:13 AM (GMT -6)   
well I spent all day yesterday at the Colon & Rectal Surgery Clinic getting pre-op stuff- a physical, blood work... & the big one- marking where my stoma will be! I am happy with the placement- even though my surgery is about 3 weeks away, I have to "x" the spot daily with a surgical pen. The ENT nurse & myself took a lot of time to place it. It's not as low as I originally would've liked, but truly, I had wanted it so low that it would've been literally hanging between my legs! It's about 2 inches to the right of my belly button, and about 2 inches down from my belly button. We tried on wafers, & it turns out I will most likely be using a pediatric wafer because the adult ones are too big- they sort of overlap my belly button & do not seal. So we tried a pediatric one & sure enough, good fit. And apparently you can use adult bags with pediatric wafers, so... at least most of the companies have that option. I go back & forth still- after my last Remicade infusion, last Monday, I was feeling pretty good & I start to think "Maybe I can put it off...."  But that really is counterproductive at this point- what good would it do me to put it off for another 6 months? I'm mentally ready, my job knows that I need the time off, my family & friends know... And since I've been tapering my pred dose, my symptoms have already increased again. So.... it's getting closer! Thanks again, everyone, just for being here!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 10/23/2007 1:49 PM (GMT -6)   
Congratulations! You're actually lucky, I didn't get to place mine at all, since it was an emergency surgery. The surgeon just placed it where she hoped it would work best. Remember to give it time after the surgery. It gets so much better with a little time.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/23/2007 5:30 PM (GMT -6)   
Eva Lou,

I was interested to read your post, as I just found out recently that I will need to have an ileostomy in the near future as well. (I did not know that they did all those things pre-op that you wrote about). I am sure good stoma placement will make the adjustment that much easier! You sound like you are all set for everything, both with the practical and emotional aspects. I am jealous! :)

I also keep going "back and forth" like you because I am not Horribly sick, I have good and bad days, and keep thinking "I wonder how long I can put it off..." More than 50% of my colon is now strictured (narrowed) from Crohn's, and it will not get better, but right now I have stomach pains only occasionally. I wish they would just hurt all the time so that I would be sure that I am making the right decision..! Right now their major concern is that I am unable to have a colonoscopy (they can't fit the darn tube through because of the narrowing), so if I get colon cancer it will be hard/impossible to catch early.

I have not yet decided on an actual date to have the surgery...they want me to do it in the next year. I am thinking more like in the next 2... we will see.

I think you are very smart for making this decision and seem to have a great attitude about it. I am striving to be where you are now in the near future.

Just curious, and only if you feel comfortable answering, what is your age? What kind of job do you have? Why are you having the ileostomy? (UC or Crohn's?) For some reason, it makes me feel better to know things about the "real people" on this board who have ileostomies and are cool with it/live normal lives. Every person I read about here makes me feel a little bit better me getting one in the future.

Thanks for any info you are willing to share. Keep posting about what you are going through, I learn more from this board than any surgeon or nurse!

-Erin

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/23/2007 5:49 PM (GMT -6)   

yeah, I saw your post, Erin- since I haven't had surgery yet, I didn't reply. But- I am 37, I have ulcerative colitis that has become chronic & refractory over the past year & a half. No meds currently available work, not even good old prednisone does much. I became fed up with the hassles associated with UC- being afraid to leave the house/bathroom, wearing a diaper in the car, having to pull over to poop on the side of the road, cancelling everything due to bathroom issues. When my GI first mentioned surgery to me, about 2 years ago, my first thought was a giant "NEVER!!!!!!!" I figured I'd deal with the UC as long as I had too. But over time, my "normality" became so abnormal that it seemed more restricting to live with UC than to live with an ileostomy bag. Plus, when all the meds including Remicade, my last great hope, pretty much failed... what else am I to do? I wound up in the hospital with strep pneumonia, drug induced hepatitis, bacteremia, & a host of other problems from one of my Remicade infusions. My immune system has been so shot down from the meds I'm on, I've lost about 30 pounds in the past year or so, my health is crappy. And I have a 5 year-old daughter & a husband, & a life I miss living! I work at a health center, a desk job, admin. stuff. I'm lucky in that respect because I work with health care professionals, who can't help but be understanding. I haven't told a ton of people yet, because it is.... well, a little freaky. I don't know... I do go back & forth- like I said, I had a double dose of Remicade a week ago to stabilize me for surgery. It's stabilized me so well that I have 2nd thoughts about the surgery! I know, logically, I am making the right choice- I know from past experience that Remicade is not a cure, that my body has already made antibodies to it & will continue to do so. And I know that I will be "happier" & more comfortable with an ileostomy, in the long run, & finally able to get off meds. And I feel that by delaying surgery, it's just putting off the inevitable & making it harder for everyone, especially myself. But it is hard- I have a great attitude now, but who knows how I'll feel post-op? I tell you, this board has been great. And truly, to get to the mental point that I'm at right now took a good year or more. Combined with some great GI doctors, & family/friend support. I can honestly say I feel good about making the choice- I don't want it to be made for me, in an emergency situation, & the only way to avoid that is doing what I'm doing. No, I don't want to get this procedure done, but I don't want to have UC in the first place!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 40mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/23/2007 7:26 PM (GMT -6)   
Eva and Erin,
I can completely relate to what both of you are going through. I was diagnosed with Crohn's when I was 28 and was told that it was so bad that I was going to have to have my colon removed. Well, my response to that was, "No way!!" Since I refused surgery, I went on a 7 year roller coaster ride of feeling sick, taking meds, feeling better, taking meds, feeling sick, taking meds, feeling better, taking meds, until the meds stopped working and then all I felt was sick.

My colon kept getting worse, so I had it bypassed with a temporary ileostomy to give it a chance to rest and possibly heal. I agreed to the surgery, only because I knew it was temporary and had every intention of having it reversed after 6 months.

Well, much to my surprise, I really liked the freedom the ileostomy gave me. I'll never forget the first time I went clothes shopping and didn't have to bee-line it to the bathroom several times while I was there. I could grocery shop, too, without having the "urge" several times. I could sleep through the night, without having to get up every hour to go to the bathroom. It was wonderful!! The bag was so well hidden under my clothes that people didn't even notice it was there. I was shocked that I actually LIKED it!!

Well, 8 months into letting my colon heal, it started bleeding nonstop for several days. I cried, because I knew that it had not healed and was worse than ever. I knew that I had to make the dreaded decision that I had been avoiding, so I weighed the pros and the cons to surgery. The biggest pro was that by removing my diseased colon and rectum, there was no way that I was going to end up with cancer there. That was it for me. I made up my mind that I was going to have surgery and get on with my life.

Well, that was a year ago, and ladies, it was the best decision I've ever made. I have been disease free, pain free, and medicine free since surgery and have not felt this good since before I was diagnosed with that dreadful disease. I am blown away by how sick I was without even realizing it.

Erin, my advice to you is, if you're ready to have the surgery, please don't wait several years. You are young, and the recovery is quick. I had my colon and rectum removed and was out driving and grocery shopping 2 weeks after surgery!! The pain meds they give you are so good that you really don't feel much pain.

I just wanted to let you know that you are not alone, and there is a bright, shining light at the end of this dark tunnel, and it is your health. You are going to get good health back, and that is going to change your life in ways that you can't even imagine. I'm so glad you found us here, and we'll be there for you every step of the way encouraging you and answering any questions you may have.

Take care,
:-) Cecilia

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/23/2007 8:56 PM (GMT -6)   
that is a great way to put it Cecilia! totally sums up everything!
erin and evalou, it will be better! i promise, after the intial feeling yucky from surgery, and even then, you will feel better in some ways. When I woke up from surgery i felt better, i felt almost clean like. That doesn't make alot of sense, i know. I mean i felt rather sore and icky from the surgery but that was not so bad, because i knew that was going to go away in a few weeks! and it did
Having two less places to have cancer is a plus also.
We are all happy to answer questions, i havent' had mine that long, but i will share what i know!

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 10/24/2007 3:13 PM (GMT -6)   
I know you ladies are both right... and I am anticipating waking up & feeling better. I do know what you mean, summerstorm, about "cleaner". I also can't wait go out w/out dashing to the bathroom at least once. I just got off the phone with my primary care doc- calling me at work!!! to let me know that once again my blood sugars are high from the prednisone. Yeah, I know..... I am sick to death of the med roller coaster! So he wants me to get more lab work, which i will, but I told him I'm sure they're high all over again cause I've been back on a high dose of prednisone. I also told him about the upcoming surgery, even though he's been cc'd on all correspondence regarding it, & he says "Wow..." You got that right, Doc!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 40mgs/day
nothing works anymore.....
surgery date- November 14th!!!!!!


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 10/25/2007 3:17 PM (GMT -6)   
Eva Lou, Cecilia and summerstorm,

Thanks for the advice and sharing your experiences. Cecilia, you should get a part-time job as a counselor for people facing ostomy surgery! You are very convincing and understanding. You are right that I should not wait--it doesn't make sense to do so. I have always prided myself on being a pretty level-headed, practical person, but when it comes to choosing to have surgery, I know I have not been thinking about things logically. I am sure my surgeon and his nurse think I am nuts for even hesitating--all the important reasons stack up on the side of getting the surgery.

As I am getting more and more used to the idea, it does not seem so bad. I can see it eventually being not that big of a deal for me, and I think that attitude will pass on to the people close to me. Also, any time I turn on the Discovery channel and see people with rare diseases that affect their lives much more than me, I realize that I am one very lucky person, truly! I have a great job that I enjoy, a wonderful fiance and family, and (hugely important for people like us) excellent health insurance!


:-) :-)

Oh, also, your guys' Photobucket page is great!! It was wonderful to see so many happy, normal people with ostomies! And it is nice to put faces with the names!

One of the surgeons recommended to me highly is the father of a student of mine! (eek!) I get very nervous thinking about what if my students found out that I am getting an ostomy, so I kindly declined to call him (I found someone else just as highly looked upon if not more so--there are a lot of great surgeons in Pittsburgh).

Have a great night everyone. I am sure I will be on here much more when I finally set a surgery date...

Erin :-)

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/25/2007 4:29 PM (GMT -6)   

Eva and Erin,

Just wanted you both to know that I have been thinking about your upcoming surgeries.  I wrote a very heartfelt message to you both the other night --- no it didn't get posted though cuz my internet connection timed out cuz I took soooo long writing this message, and when I hit send, it went into la-la land! 

So, here is a very short to-the-point message ----   both of you, GO FOR IT!!  You will be much healthier, and happier people once you recover.  My history is very, very much like "flchurchlady's".  It was years of oral meds and none of the new stuff was around when I was diagnosed, lots of resections, and tons of pain.  But one of the best benefits you all have is the internet and forums like this one.  I didn't.  That just shows ya how old I am, and how old my ileostomy is!!!  I had my 'final' surgery in 1984! 

Please be sure to keep us all up to date on your pre-ops, doctor appts, and be sure to ask any questions you may have.

You both will be new people.  My husband, who I dated prior to my surgery, told me that he couldn't believe how much I changed after surgery.  Amazing what no pain, no meds, no running to the bathroom all the time will do for your attitude on life!!

Take care -  Both of you.  I'll be thinking of you.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/25/2007 8:41 PM (GMT -6)   
Cecilia and i were talkign last night about we couldn't figure out why we were so against having hte surgery when we first got sick But what i was saying is that i had no idea why i just kept being sick and trying all these things, that i knew were temp fixes, when i knew there was a permanent one!
Anyway, if you want to see some more people with ostomies, take a look for famous people wtih them. Tony Snow (white house press guy) the Queen of england, Fred Astaire all have them. Even Napoleon had one! SOmeone said that was probably why his hand was in his coat all the time, lol.
What i am saying with that is, that if those people, a ruler like napoleon and someone as accomplished as Fred Astaire can do all that with an ostomy, that made me feel like surely i could clean house and do laundry!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/26/2007 3:56 AM (GMT -6)   
For me, it was fear of the unknown that made me so hesitant to have surgery. Luckily, having an ostomy is nothing like I imagined. I thought that everyone would know it's there, and they don't. I thought that people who knew about it would treat me like a leper, and they haven't. I also thought that it would be a lot of trouble to deal with, and it isn't.

The bottom line is, none of us asked to be sick. If we had a choice, I feel confident in saying that none of us would have chosen to have a serious illness that leads to an ostomy. Since that's not the way things work, we've all had to do what was necessary in order to live healthy lives. For me, it came down to choosing life or death. I chose life (with a bag), and I'm very happy with the way things have turned out. :-)
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

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