Sometimes I feel like a freak...

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2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/6/2008 6:59 PM (GMT -7)   
I am scheduled for my total colectomy on September 22 and other than everyone on this board, no one understands.  When people find out I'm having surgery, and then what I'm having surgery for, they look at me like a freak.  It's like no one has ever heard of this before and I'm weird or something.  Then they give me this look of pity that just kills me!!  It makes me feel like I've done something to cause this.  And this is from people like my co-workers, a few friends, etc.  My family is supportive and they understand, but up until now I haven't discussed my bowel problems with anyone, and I still don't but they have to know I'm having surgery.  The next question is always, what for?  I feel rude if I say, it's personal or something.  How do you all deal with this?  Has it happened to you?  I am so frustrated!!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/6/2008 7:08 PM (GMT -7)   
my grandma drove me crazy when i told her what i was doing, she was oh no, why that's horrible and blah blah and i was like, really it's ok

but what i tell people is that i had surgery because an antibiotic messed up my stomach (which is true) and that i had some of my intestines removed and some repaired (which is true) people seem to take that ok. I havent' told any people that didn't know before hand.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/6/2008 7:13 PM (GMT -7)   

I lost my colon and rectum due to a different reason than yours.  This was 7 years ago and I did feel like a freak at times.  I had a couple of friends get weird when I told them about my impending surgery.  Guess what, they are not my friends any longer.  I guess they couldn't handle the fact I lost MY colon.  Once I got my life back (too sick with a colon) and began doing all those things I couldn't do with my colon I lost the freak label.  People I have met since I had surgery don't know that I am different than there are.  I don't bring it up unless the conversation warrants it.  I am not embarrassed but I have always been more reserved.  The way I look at it is that you are giving your body the opportunity for better health.  If it takes a radical surgical procedure, so be it.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/6/2008 7:21 PM (GMT -7)   
A lot of people just don't know how to handle medical subjects they are totally unfamiliar with. If they don't know exactly what someone is talking about and then the word "surgery" is included, they may be responding with sympathy/empathy but in total ignorance. Not everyone is familiar with digestive problems. Those folks who have them have to educate themselves, but those that don't have any problems certainly take a well-working digestive tract for granted. I'm not making excuses, but I'm sure I've had some of the same responses. It's just been so long ago that I've forgotten about them!!! Obviously, those responses haven't hindered me living my life in any way for the last 24 years with an ileostomy. Let their comments roll off your back.... just consider the sources. And remember, not all of them are intended in a bad way - just an uneducated way.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/6/2008 7:23 PM (GMT -7)   
p.s.   And besides, I think people are a lot more comfortable talking about any other kind of surgery or procedure so long as it's not related to "bowels"!!!   Just think about all the people that have gallbladder surgery or heart surgery or knee surgery.  Not the same responses to those, right?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/6/2008 7:54 PM (GMT -7)   
I'll admit before i got Crohns i would have thought about people pooping in a bag as freaks. It just didn't make sense.  BUT IT DOES NOW.  tongue
 
 Of course i never really cared about what people thought in the first place. So my attitude towards anyone who doesn't get it is screw 'em. Not worth my time really.
 
I had a friend who couldn't understand how i was going to play golf because of the bag. After beating his sorry @ss by 8 strokes, i still think he's clueless.  But he has a better understanding that it's not the end of the world.
 
I think it was the Remicade treatments that i used to have to have in the cancer wing of the hospital i went to that kept me real.   There are SOOO many people that have it worse than pooping in a bag.
 
 
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/6/2008 10:36 PM (GMT -7)   
Thank you all so much for making me feel better. I'm glad to know I'm not the only one that has had this reaction. I like the idea of not telling them exactly what I'm having done, but being more vague like summerstorm. I don't know why I didn't think of that! And you're also right about after the surgery, no one needs to know after I'm healed that I have had it. I never thought about that aspect of it.

I'm going to bed now. Thank you all again for taking the time to read and respond to my post. I really appreciate it!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 9/7/2008 6:24 AM (GMT -7)   
2 ris k,
When I told people about my surgery, they though I could not live without a colon. I also told them that I needed it removed and had to explain the whole reason about how my colon was not working and in order for me to go to the bathroom and not be sick all the time I needed this surgery. I also googled colectomies and printed out articles and information that I made copies of and handed out to people so they would have more of an "education' about what was going to happen and that everything is going to okay. I also printed out onformation about the large and small intestines so they would also know how I would be able to digest food and what I would digest. I printed out the large intestine info to show them that because i have no large intestine these thinsg will not happen, but I also had printed out the small intestine info to show them what I would be able to digest as in vitamins, since some of my friends were worried how i would get some kind of nutrients. I also kept these handy because after my operation I am always going to the abthroom alot, and with this info at leats they know why things go right through me because i do not have a colon to hold my poop long like everyone else. when I told them how sometimes I poop out food the way it went in, they are all curious,about what it looks like, which freaked me out abit, but at least now they are understanding and even interested in talking to me more about it, which makes me happy. I should teach a class, lol. Well, I hope this helps you. Trust me doing this helped not only me, but the people around me to understand me better and it gave them some education that they would noramlly would not get inschool, which is a great thing. who knows maybe they will be colon doctors, lol.

hopestar
Regular Member


Date Joined Jun 2008
Total Posts : 67
   Posted 9/7/2008 2:24 PM (GMT -7)   
it really does help and who cares what they think, the point is ur doing this to help urself be able to feel better so u can go on about ur life life living it hw u choose.

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 9/7/2008 2:56 PM (GMT -7)   
2 RIS K,

I can imagine how you would feel like a "freak" as you said...before I had my surgery, I thought I would always be abnormal or something afterward, and that I would always be aware of my changed body.. I am a 27 year old female and this surgery sounded like the end of the world to me...I even thought my fiancee might leave me--I told him I would not marry him until After I had surgery (he wanted to get married before it) bc I secretly wanted to see if he could "handle" it...!

Well, I am so happy that I had the surgery. No one would ever know I have an ileostomy--I go to work (I am a teacher), go out and do everything, and seem like your average, healthy, normal girl! I just got married 3 weeks ago!

I chose not to tell hardly ANYBODY. I have family members that don't know--one of my brothers does not know!! Now, you said you weren't sure what to do when people asked; well, to be blunt, I just lied to them! (that is, if they even asked what it was for)! I said I was having a intestinal resection (taking out a bit of intestine) which is kind of true...! Both an ileostomy and a bowel resection have the same recovery time....anyway, I figured God would be okay with me not telling people the truth, bc I knew that after my surgery I did NOT want people treating me differently--it was going to be a lot to adjust to to begin with without having people being weird or pitying me...!

Anyway, hope this helps. People do not Need to know everything about you..! :)

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/8/2008 8:15 AM (GMT -7)   
LittleE I know you are right, but I am one of those people that always tell too much about myself. I try not to but I always do. That's how I get myself into these situations. I wish I could be like you.

Psygirl I like what you said about looking up that stuff and printing it out, but mainly for myself! I haven't looked all that stuff up yet. I don't even know what the samll intestine will absorb or not, etc. But I will print it out because I know my boys, my husband, and my in-laws will all want to know. We have a very close family that way.

Again, thank you for your advice. It is so nice to come to people who know what they are talking about!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 9/8/2008 11:51 AM (GMT -7)   
2 ris k,
you are welcome. When you look up that stuff, you will have an understanding about everything that goes on inside the intestines, and maybe your boys will become mini doctors, lol. looking up and printing up the information helped me to understand why I go to the bathroom so much, and it helped my friends and family understand what it happening to me, so that way they have an understanding about why I go to the bathroom so much. well, I am glad that you have found this info helpful.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/8/2008 8:24 PM (GMT -7)   

Amanda, 

Most people don't know that the large intestine is an "optional" organ. I didn't know until I was told that I had to have mine removed. That's when I found out that the small intestine absorbs nutrients, and the large intestine extracts fluid, so you will not be missing out on vital nutrients after having surgery.

Are you going to have an ostomy or will they connect your small intestine to your rectum? I'm glad that your family is supportive and that you found us here, because we understand why you're having the surgery and that your life is going to improve dramatically afterward. smilewinkgrin

Take care,

Cecilia


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/9/2008 11:01 AM (GMT -7)   
Cecilia they are supposed to reconnect my small intestine directly to my rectum but I'm afraid they won't be able to. I had rectal prolapse surgery in March of 07 and they removed my sigmoid colon as well as half of my rectum. When I asked my surgeon if she could still do it she said she could but it would be more difficult. I'm sure she'll tell me more when I see her Friday for the pre-op, but that comment made me very nervous. My worst fear is waking up with a bag, but I think that was everyone's worst fear. I have thought about the possibility and if it does happen, I will learn to live it. I know there are worse things in life, however, I would prefer not to have one.

Psygirl, my boys are great, they are 10, 16, and 18. Unfortunately none of them want to be doctors! :) My oldest wants to be an Air Force Officer (like my husband who just retired) and my 16 yr old wants to study music and write music for rock bands, etc. My youngest doesn't have a clue yet what he wants to be. But they are all great and very supportive. Being the only "girl" in the house, I get very spoiled!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/10/2008 4:51 AM (GMT -7)   
Amanda,
I hope she can connect it for you, but if your rectum is not going to work properly, then having an ostomy would be so much better than having rectal problems. I had Crohn's in my rectum for 7 years, so I've been there and would never give up my 'beloved' ostomy to go back to that! wink

Good luck on Friday, and please keep us posted on what the surgeon says.

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 :)


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 9/10/2008 8:55 AM (GMT -7)   
Thanks Cecilia, I will. Do you know how much of the rectum you have to have for them to do it?
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - 3/13/07
Diagnosed with Colonic Inertia - June 08
Scheduled for Total Colectomy - September 22, 2008
 
The whole world is at your feet; so paint your toenails Red!
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/26/2008 2:12 PM (GMT -7)   
HI Amanda!

Well, I can surely relate to your feelings, but I have to admit that I think I have gotten past worrying about what everyone thinks...the way I did it is to tell people in detail what the real problem is, sometimes it was awkward or uncomfortable, but I am much closer to everyone I have shared intimately with about my ostomy and other Crohn's issues (like fistulas)

now there are some people who I just decide have no reason to know...others, I will tell more about if they ask, and then there are some of my friends, that I talk to about it, just because I need someone to listen to me, and this board, while great, does not substitute completely for the value of sharing one's deepest most intimate secrets with another person, face to face, up close and personal. There is such a bond that happens when an exchange like that occurs...

Recently, I have decided to have a proctocolectomy (i now have an temp ileostomy). Now, some of my friends, who i have trusted before to talk to about it, have been honest with their thinking about the surgery, they have asked me, are you sure you want to go ahead with it? what's nice is that I actually believe they are asking because they care, not because they want to judge me about it. that has only come from feeling confortable enough to be open and honest with them, sometimes in farily graphic detail even...

The biggest challenge for me has to do with the fact that I have many perianal fistulas....trying to explain that to someone can be tough, and is guaranteed to make you feel awkward, but the more I have talked to people about it, the more those people can empathize with me, not just say "awww. that's sucks" but to really mean it, and to really here that they hope I get through it all.

anyway, i wish you luck and hope you learn that in the end, you are your own judge, it is your decision, and you have to live with it....

Good luck and I hope you feel better.

if you ever want to discuss it more, you can email me (the mail button next to my name)
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

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