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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/4/2007 4:49 PM (GMT -6)   
hi folks! I posted on here a few weeks ago about possible surgery- I'm really at the end of my rope, UC-wise right now, & truth be told I can't get my darned colon out fast enough. I do have an appt. with this world-renowned GI doctor at BIDMC in Boston on 9/18, for a 2nd opinion consult. I'm not expecting much, but I am interested. However, I also have to make an appt. with the surgeon at the Lahey CLinic for a surgery consult. My only objection right now to surgery is my body image- I've never had a great self-esteem, & I really don't know how such a body altering surgery will make me feel. I'm prone to depression & have seen therapists in the past, as well as been on anti-depressant meds. I've been in a relatively "good place", emotionally, for a long time now, but I'm scared that surgery will put me right back in a bad mental place. I'm married to a great guy, so the dating issue is not there, I have a beautiful 5 year-old daughter. And they both have seen me so sick the pat year or so, & will support me whatever decision I make. But it's me I'm worried about! How did those of you... uh...less secure... eyes deal with the body image issue????
diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Cipro- 200mgs/day


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/4/2007 4:57 PM (GMT -6)   
I wasn't a secure person at all when I had my O surgery but eventually, it was a new life for me, seriously. I nearly died from malnourishment before surgery. After the healing and adjusting period, I was happy to feel good, feel like eating, and not sit in the bathroom for hours on end. Or have to "run" to one. Or not go anywhere for fear I wouldn't make it to the bathroom. Or not eat if I really did need to go anywhere so I wouldn't have to run while I was out. I hated my body at first. Don't hate it anymore. It is a huge a adjustment. But it is also a state of mind. Please think positive - it is your health. We are here to support your decision.\
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/4/2007 5:46 PM (GMT -6)   
what a nice reply... it made me tear up, every word rang so true. Thank you....!!!!!!

diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Cipro- 200mgs/day


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/4/2007 5:49 PM (GMT -6)   
I'm kinda curious on who you are seeing at BI?? I also went there for a second opinion on where i was headed. That was about 1 and 1/2 years prior to my surgery and just about everything he put in his findings were right on.

Body image won't be as important to you once you're feeling better. Happy wins all the time!!
 
Crohn's for what seems like forever
Bagged in August 2006


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/4/2007 5:54 PM (GMT -6)   
You are very welcome Eva Lou - you will find a great group of people here.. stay in touch, k?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/4/2007 6:47 PM (GMT -6)   
Eva Lou,
Thanks for sharing your story. I'm so sorry you're sick and having to think about surgery. My heart goes out to you.

I just wanted to share with you how someone with a good body image had to deal with getting a bag. I think it might have been easier had I not liked my body, because then I would not have allowed myself to suffer from Crohn's for seven long years and almost die from it, because I did not want to have the surgery and the bag. I was so against it that I didn't even research it to find out if it would make me feel better!

I became so sick, that four GI doctors had to convince me to have a temporary ileostomy to bypass my diseased colon. I did it reluctantly and had every intention to have it reversed once my colon healed, but that never happened.

What did happen was I liked feeling good. I liked being able to sleep through the night and go shopping without having to run to the bathroom several times. I liked what the ileostomy gave me, which was health and freedom.

I wear clothes all the time, except in the shower, and the bag is totally hidden under my clothes. I can honestly say that I don't even think about it being there. I don't have a diminished body image because of it. I just have my life back.

I know that this is a difficult decision for you, and I commend you for looking into it. We are all here to answer any questions you may have, and I wish you all the best.
Cecilia
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 :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/4/2007 8:56 PM (GMT -6)   
before i had the bag, when i first got sick, i was really really skinny, and i had this great body, then i got sick and that went all to pieces, but my first GI dr said he wanted me to take all these meds (this was 8 years ago) so that he wouldn't have to take my colon out, and i said (dumb me) what would you do with it? and he said put it in the trash can, and i said, well won't i die? and he told me about the bag and i FREAKED out, i mean like craziness, lol. And then i had to go on the steroids and gained alot of weight, which i finally lost after i had my baby. Anyway i was back to being fairly skinny, and having as good as a body as you can have after a baby, lol. SO i was still really against having a bag. But then after a while of taking my son into the bathroom with me for hours and realizing that this way i would not get to go on field trips, or t-ball games i said, just forget it (well i actually used some diff words, that i won't put here!) i am getting this colon out and beign healthy! so i thought about it, and talked to people here, who by the way are great, and i talked to the dr, who wanted me to do all this other stuff, like remicade, which i tried, and now i wish i hadn't, then he was trying to talk me into a j-pouch, and i looked into that too, and said, noway, but he still kept trying to talk me out of, by this time i had resigned myself to it, and i told him either he would find someone to take it out or i would do it myself, lol.
Anyway, when i woke up in the hospital, my actual first thought was OMG what did i do??? but then, and this sounds stupid, but the nurse came in and said, do you want some juice, we have apple and grape and oj, and for the first time in 8 years, i could say, yes i would like some grape juice, and that sounds like a stupid thing, but that helped me to realize that i had done the right thing. and over the next few weeks as i started to feel better and got back to being like i was before i had gotten sick, it hardly ever crosses my mind about this bag! i mean, sure there are times, when i think, yuck this is gross, lol. But then i remember how awful i felt, and how gross it was to be sick ALL the time, and i think, this is nothing. I can still wear my clothes, and actually i look better, my color is coming back, my hair is not as icky looking, my eyes aren't dull.
It may take you some time, but i think that you will adjust to it, and be much happier!
and remeber everyone here is here for you, and always will help!

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/5/2007 2:55 PM (GMT -6)   

Slice- I'm seeing Dr. Mark Peppercorn at BIDMC- he's the head of the IBD Center at the hospital & a Harvard Medical Professor. Apparently he's got a phenomenal reputation. I'm interested in talking with him but in reality I'm not expecting much. I think he'll most likely verify my other GI doc's surgery recommendation. Or maybe offer me a clinical trial, but I live on Cape Cod & really can't be driving to Boston on a regular basis for labs, meds, etc.

For everyone else- thanks a MILLION for the replies! I know once I feel better, physically, the body image issue will cease. And I made an appt. today with a surgeon (Dr. David Schoetz) at the Lahey Clinic for a surgery consult, so.... I am heading in that direction, & I'm happy about it. I'm so tired of being sick, being afraid to eat, wearing a diaper for gosh sake!!!!... not being able to take my daughter places cause of the bathroom issue. Just all of it, I want it to be over. I'm not expecting a miracle, but the bag has got to be better than this. Another of my big fears is the ballon bag syndrome reported open awakening, & alsq- the nosies!!! what gives... are they like fart noises?!?!?!


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Cipro- 200mgs/day


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/5/2007 3:11 PM (GMT -6)   
Eva,
 I saw Peppercorn a while ago for the 2nd opinion. He's a good guy and like you said, has a good rep.
 I had a few appointments with him and he then sent my GI ( who actually suggested i get the second opinion) and myself his findings and what he thought my future looked like. He pretty much hit it right on. 
   It's just like you said. You will get past the image issues, mainly because you will be feeling better and doing things you missed out on.
  Good luck at BIDMC. Make sure the Sox aren't playing at the same time. Love the traffic.
 
Crohn's for what seems like forever
Bagged in August 2006


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 9/5/2007 3:33 PM (GMT -6)   

funny, my GI gave me Peppercorn's #! Hey as far as 2nd opinions go, you can't get much better in these parts. Now did he suggest you have surgery? Or was he able to offer you anything your GI couldn't?


diagnosed '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Cipro- 200mgs/day


linbrook
Regular Member


Date Joined Jun 2007
Total Posts : 20
   Posted 9/5/2007 5:42 PM (GMT -6)   
I've never had great self esteem.  I see something totally different in the mirror than what other people see.  When I first received my ostomy it was a shock.  It was an emergency surgery due to a ruptured colon.  I had no idea that I was sick.  I cried for about a week feeling like freak...luckily I've been married for 23 years to a great guy.  I have two wonderful children and a family and in-laws that offered lots of support.  Even with all the people around me I still couldn't help being depressed.  I also went into menopause due to the surgery.  I lost my left ovary due to the contamination.  I had previously had a partial hysterectomy several years ago.  Needless to say, I cried a lot at first.  My regular doctor put me on Prozac and Xanax and my Gyn dr. put me on estrogen.  After several weeks I started feeling a lot better.  It's been close to seven months since the first surgery was done.  I was reversed three weeks ago.  I feel like  I have a butt on the front of my belly!!  My husband says that I look great and that I've always been able to turn him on!  It really helps to have an understanding family.  They don't know all the emotions that you will go through, but they are there to offer prayers and hugs.  With that a person can make it through. 
 
Good luck to you!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/5/2007 6:05 PM (GMT -6)   
Eva,
Everybody expels gas when they lay down and sleep. For me, the gas goes into the bag quietly, and it puffs up. In the morning, the bag is full of air, so all I have to do is go to the bathroom and empty it. There are excellent deodorizer drops that I put in the bag beforehand, so there is no smell.

The only noise I've ever heard my stoma make is a soft sputter, and that's only after I've eaten. It sort of sounds like a soft stomach growl. It isn't loud, and I'm the only one who ever seems to hear it.

Hope that helps, and good luck with your doctor visit.
Cecilia

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/5/2007 6:15 PM (GMT -6)   
He pretty much said i'd most likely need surgery. That was over a year before i ended up having NO choice but surgery. He never really suggested surgery, but thought that would be where i was heading. Thats basically the reason i ended up checking out the 2nd opinion. My GI had brought up surgery for the first time during an appointment and thought i might feel better hearing it from more than just him.
I can't complain about the docs i've had, everyone had been great and upfront with me. Peppercorn was the same, told me how it was and the way he thought it was going to go. My GI thought i was a little further away from surgery than Peppercorn did. Other than that they pretty much agreed.
 
Crohn's for what seems like forever
Bagged in August 2006


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/7/2007 4:25 PM (GMT -6)   
i am gonna start a poll on another topic as to who is happier after their surgery than before their surgery.....

i already know what the results will be....just like i already knew what people's responses would be to your question even before i scrolled down to start reading them....

that's because for most people, the surgery is the best thing that has happened to them in the course of their disease (whichever one they had)....because, everyone feels so much better afterwards. I myself still feel somewhat self-conscious about my pouch, but that is nothing compared to how much happier i am not being in all the discomfort i was in.

i know it must be harder for a woman, since women are always forced to consider how they look, especially in today's culture.....

i myself sometimes get sad about the whole thing, since I am trying to date again these days....i wonder if I will miss out on a potential mate simply because they are turned off by my pouch....then my ultra-intelligient brain kicks in (no i'm not cocky or anything) and I realize, the right women for me will be able to see through such a meaningless physical difference and appreciate me for who i am, not simply how "perfect" i look or not.....

it seems like such a shame that we as a society have allowed ourselves to become so obsessed with having that "perfect" look....

it really depends on your perspective though

for instance....if you consider things from an eastern sort of philosophy, there is an idea in which we are simply a bunch of atoms made up of elements, all these atoms have varying energy fields vibrating at various "levels". These energy fields, react with one another and form certain types of bonds, this allows us to "see" our physical bodies. Imperfections can then be seen merely as natural imbalances in those energy fields....Our perceptions of imperfection are actually just in our head.....if you can open your mind, you can open your spiritual "eye", and you can see yourself and others as they really are, beautiful examples of the phenomenal power of creation!

i know it's a little heady, and I can't explain the idea as well as some monk....but i hope you get the idea

the hardest part is getting that concept from your head, to your heart.....sometimes, the longest road ever traveled is that 12" distance.....

i wish the best for you and am sure if you go ahead with the op, you will be happier in the long run than you ever imagined..... eyes
"All we need is love....love is all we need"

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