colon removal and my scrwed up life these days

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Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 8/12/2008 1:47 PM (GMT -7)   
ok, this is reposted from the Ostomy forum, since I get a lot more reply's here, I wanted to post to both, sorry for taking extra space mods, but I need some today....

---


I think most of you know my background, I was diagnosed as a teenager with Crohn's, it has remained entirely in my lower digestive tract, with severe fistulas that simply won't go away, I have tried all the standard meds, and the biologicals. I go to Cedars-Sinai, to one of the most advanced Gastrointestinal medical centers in the world, i believe that my doctors are as good as they get. I now have an ileoostomy....but my fistulas haven't healed as hoped, so it's no longer a "temporary" ostomy.....

I am really on the fence now as to whether to just bite the bullet and have the surgery to remove my whole colon and rectum, or just keep it up with the setons.

The setons I recently had put in, came out a few weeks/month-or-so ago, (the thread that ties them together came undone).

So now, I am going to go back and see my colorectal surgeon.

The plan when he put in the last set of setons, was to let them help heal the area, then go ahead with the surgery to remove the colon and rectum. The doc thought logically that if the infection / irritiation in the perianla area was lessened, then my healing time would be less and I would need less skin graphing.

Now I am freaked out since I can't afford to lose even one week's pay, but then again, can i afford to let my body get worse?

Then I see specials on TV about how they can grow replacement bladders and fingers now, and I wonder how far off they are with a replacement rectum/colon.

I just want my life back to how I felt when I was a strong, fearless, pain-free pre-teen (argghh, that's an eternity ago now, almost 17 years!) and I do get annoyed by my ostomy.

I now have a new fistula that is among the most painful I have ever had. This bums me out since after my ileostomy, i was slow to develop any new ones.

I wonder if i am just doing this to myself by refusing to try one or all of those boring and tasteless diets that is designed to kill the "rampant yeast infection" that causes like every health problem in the world (yes, I am slightly cynical, just slightly...ha!)

oh, and then there is the smoking.....i need to quit that too....

of course, I still deal with the b.s. all Crohnies do, comments like the one my brother made, he tells me after being angry at me this weekend, "I don't hold in my feelings, so that's why i never get sick!" brothers, love to hate em' sometimes, can't imagine life without them other times!

I had to tell him, "really? what's that skin irritation on your cheek there from, normal aging? no, since you work in the sun all day, it's probably an actual illness, like a pre-cancerous lesion!, but wait, you never get sick right?"

anyway, add to all of this, the fact that I if I weren't sick, I would have jumped right on a chance to move to Vegas, all expenses paid by my employer. Now that I am fairly sure I can't avoid surgery, I know it would be dishonest to my employer go ahead with the move (my Dad's one of the vice presidents, and it's a great company).

Then of course, I am single still, which I can deal with, but new fistulas, don't exactly make me eager to start things up with a new girl.

Ok, so I think I am done ranting. I really think I just needed to vent. I first tried to just offer helpful advice or thoughts to other posts here and on the Crohn's forum, which helped me feel better for a minute, but I need some kind words and encouragement since I am feeling beaten down these days.....

ok, please "raise me up" and "give me wings so I can fly"

sorry if I have depressed any of you! I think I am as good as cheering people up as I am at bumming them out!







redface redface nono nono sad sad skull skull smhair smhair eyes eyes cry cry confused confused shocked shocked
"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?


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/12/2008 1:59 PM (GMT -7)   
Sorry you are having such a tough time right now Nate. I wish I had the magic words that would help you to feel better, but unfortunately I don't. Please know that I am keeping you in my prayers and I do hope you get back on the road to wellness soon. (((HUGS)))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


29Lancelot
Regular Member


Date Joined Aug 2008
Total Posts : 37
   Posted 8/12/2008 2:52 PM (GMT -7)   
We share a lot in common. I was diagnosed 22 years ago also as a teenager. Over the past 15 years my disease has taken root in my colon as well. I too struggle with endless fistulas and abscesses. Seemingly just another indignity in a long line.
 
Although I must admit that I count myself fortunate to be a step or two behind you - having had some relief over the years from the biologics - I nonetheless know your fear. None of us have done anything to bring this upon us and each of us have our respective crosses to bear.  
 
Like many others in this forum, I've known pain that I wouldn't wish on serial murderers, but none of it compares to the mental anguish we all live with daily. When faced with difficult decisions like the one you face now, I do my best to ask myself what is best for me, not the physical me, the spiritual me; the me that will be here when my ileum is gone, when my colon is gone, etc...
 
Granted you are in a most unenviable position - but do what is best for you - all of you. If it means an ostomy then so be it. I read in you a combination of strong character and yet to be attained goals (personal and professional).....do what you need to do to live your life and attain your goals.....just like you have for the past 17 years.
 
Best of luck my friend.
  • CD dx '86. Re-section '93. Dx Crohn's Colitis '98.
  • Participation in Remicade trials (fistulae) late 90's.
  • Manifestations of fissures, fistula, scleritis, polyarthralgia and erythema nodosum.
  • Presently on Imuran, Cipro, Flagyl and Remicade (2nd attempt - 10 yrs later). Possible serum sickness reaction to Remi after 2nd infusion - awaiting consult.
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 8/12/2008 3:08 PM (GMT -7)   
29lancealot...

thanks for the thoughtful response, I do agree we have shared similar experiences....

It's never stops amazing me how helpful it can be to simply here from someone who has been through a similar experience....i think that is why 12 step programs help some people, the good thing about this forum, is we don't have to feel ashamed or guilty when we "relapse" into ways of thinking that are unhealthy or unproductive.

I do intend on seeing my surgeon again soon, as soon as the approval comes through.

The problem may be how i feel on that day, will i wimp out and tell him to hold off a bit longer, or do I take a leap of faith.

As for an ostomy, I do have one now, just still holding on for hope that it can be reversed one day.

I am happy to hear you have been able to avoid such a surgery, and can only say, enjoy it while it lasts.

On the other hand, though, I'll also admit, that I have been better after the surgery then before it. Just not better enough to not see the doc again.

Nanners, thanks for your response as well, every bit helps!
"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?


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/12/2008 4:12 PM (GMT -7)   
Hi Hope things start looking up for you soon. Seems you got alot on your mind right now and we are always here when you need to talk. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 8/12/2008 4:25 PM (GMT -7)   
glad, i know you probably have looked into other alternatives, but what did they say about things like a j-pouch or koch-pouch? is ther nothing new in the "make a new butt-hole" world? just asking...
randynoguts 



     http://www.geocities.com/randynogutsweb/


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 8/13/2008 9:49 AM (GMT -7)   
randy,

well since i have quite a few fistulas, the j-pouch is not an option, the fear is there will be fistulas forming where the j-pouch is.

for now, they are still using the MacGyver approach, poke a hole and attach a bag with some duct tape! (isn't that what an ostomy basically is? that's the way i see mine) lol....
"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?


Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 8/13/2008 10:51 AM (GMT -7)   
Interesting how so many of us were diagnosed as teens. There's probably some significance in that, somewhere.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/13/2008 11:54 AM (GMT -7)   

Wow, Glad I am so sorry you are going through this. If it were me I would push off surgery to make the ostomy permanent. What a hard decision to make for you though!

But that is just me. I have told my husband and anyone that will listen to make sure someone does not decide to remove my colon while I might be unconscious or unable to make the decision myself.  I even joked with a friend that I might get a tattoo on my stomach that says "do not remove colon" or something like that.

I also see your point that there might be new treatments soon at could fix you up enough to reverse the ostomy. there could be some new wonder drug or miracle procedure. We have been getting new ones lately at least.

It is a hard decision and I really feel for you. I think you will make the right one. Maybe a second opinion will help you with your decision?

I wish you the best!!

(((((((((GladBag)))))))))))

Karen



 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/13/2008 7:42 PM (GMT -7)   
Glad, I read your post, and was saddened by it's contents.... You seem to have gone from a vivacious young man, to one that's
down and confused.
I wish I had some great words of wisdom to offer, but I'm afraid I've nothing. Although you and people like you, that seemed to
have drawn the short straws help me realize how relatively lucky I am. Yes, I have my share of problems, but I'm that much older
than you, I've had a life. Your's should be full and this bloody disease is holding you back, for that, I feel so badly for you...
The only advice I would offer, is choose the path that will give you the most relief. Than after that, your life might become more
upbeat!!
I wish you, at least some serenity in your life.....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

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