surgery scheduled tomorrow - info/advice requested

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momtocrohnskid
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted Today 5:41 PM (GMT -6)   
My son has Crohn's. He was diagnosed a couple of years ago. He's allergic to Remicade. We've tried all sorts of other medications with no result. Last month he said he "gave up" and wanted to have surgery. He realizes that he will likely always be on a bag, and he's okay with that part, but he insists on keeping his colon, on the off-chance that there may be a cure someday and they can reattach. I've told him that I'll support him in that decision (and he'd have to have my support as he's not 18 yet - no signature by me; no surgery for him.) According to the surgeon, if he keeps the colon, he'd continue with the same symptoms he has now - painful gas, bloody diarrhea (made up of mucous, I guess?) and fistulas. Which of course, makes me wonder why bother having the bag put in then if everything will still stay the same down there, but now he has the added annoyance and potential embarrassment of an ostomy bag.

Has anyone here done what he wants to do -- "permanent" bag but keeping the colon?

Thanks in advance for your assistance!

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted Today 5:47 PM (GMT -6)   
I don't think he will be keeping the colon. If that is what is infected constantly it wouldn't make any sense. Many people here have had ostomies, permanent ones, and to be honest, when you say added annoyance or potential embarrassment that is nothing compared to what he is going through right now especially if he says he gives up. There is a learning curve for the ostomy, sure, possible embarrasment moments, sure ... but you will be healthy and live a life far greater than with an organ failing on you. It is not an easy decision at all, especially taking his age into effect. Many people have done it ... even poor little babies have them. Good luck and I wish your son the best.

momtocrohnskid
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted Today 5:52 PM (GMT -6)   
Well, Anthony, if you mean a second surgery, you're probably right. If you mean tomorrow's surgery, unless he changes his mind between now and 11 a.m. tomorrow, he's going to be coming out of surgery with an ostomy bag AND his colon.

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted Today 6:01 PM (GMT -6)   
so I am guessing that they are just removing a portion of his colon and the bag is temporary until the resection is healed. I must have misinterpreted the post then. Either way, wishing you son all the best.

momtocrohnskid
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted Today 6:05 PM (GMT -6)   
No, you didn't misinterpret. The surgeon wants to remove the colon. Recommends he remove the colon. My son doesn't want it out. The surgeon will do what he wants, even though he recommends against it. So no, permanent bag, but colon in. It makes no sense to me. Either do both or do none, to my way of thinking.

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted Today 6:44 PM (GMT -6)   
I was one of the people who didn't want the surgery because of a "possible" cure. But I asked my self, how long am I really willing to wait and do I want to continue through the constant pain daily until a "cure" was found.
Even after surgery I thought that what I did was the wrong choice. But 5 weeks ago my strength started coming back and just 2 weeks ago I really started to feel like my old self.
Plus people don't even notice the bag unless I point it out or show them. Even if it starts getting full people don't even realize it is an ostomy bag.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Step one of Jpouch surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Step two of Jpouch surgery - 9/?/2010


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted Today 7:09 PM (GMT -6)   
I have never heard of a surgeon doing an ostomy and leaving a colon. This is a first, keep us updated.

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Today 8:15 PM (GMT -6)   
that sounds dangerous to leave it in there like that. I hope he is ok
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted Today 8:36 PM (GMT -6)   
Well, I'm one who lived with a temporary ileo, for about 8 years, before I had my colon removed. It does help with the fistulas in that the drainage isn't as bad, but they don't heal shakehead

Your son will still have to have colonoscopies about every year or two and the mucous drainage from his bottom will vary in amounts. He WILL have to (should) be on medication, too, while he has the diseased colon mad It will help keep the disease from going totally crazy.

There wasn't a cure, for me, but I guess I always hoped there might be! My surgeon's stats were that, at about 10 years without small bowel involvement, I was dealing with decent odds what I have left for small bowel will be ok. Has he only had rectal disease?

From my point of view, he has to do what his mind can accept, so if this is what he wants to do...ya know! Just make sure he continues to be screened and I bet one day, in the not so far off future, he'll have the colon/rectum removed! It was the best decision I ever made and was my 40th birthday gift to me!!!

p.s. No one will know he has an ileo unless he tells themsmilewinkgrin

I'll be thinking of both of you tomorrow!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


momtocrohnskid
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted Today 8:41 PM (GMT -6)   
Ohio, THANK you. This is what I need to show him to help him make a more informed decision. He may still say "keep it in" but at least he has someone's experience to know what he's saying yes or no to when he goes in there tomorrow.

Yes, he's only ever had rectal disease. It wasn't until the fistulas showed up that they thought he had UC as all 'scopes kept saying nothing in the ileum or above. (And actually still say that.)

Although, he does get cold sores in his mouth. I just don't know how much of that is disease and how much of it is medication side-effects.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted Today 8:45 PM (GMT -6)   
I had a lot of joint pain and some mouth sores...they did go away a few months after my colon was removed(knock on wood!)...and I know I have to pay attention to signs should they show up, but I am med free right now:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted Today 8:54 PM (GMT -6)   
momtocrohnskid
    How sad he is so young, but my friends mother had it done at that very same age.  NOPE dont keep the colon unless you just want to be sick forever.....and I don't think that any kid at that age wants to be ill.  Get him a appliance and let him live his best life, so momma sign those papers and let the healing begin...  All our prayers are with you as I know this canno't be a easy decision for any parent.
 
He is young and healthy otherwise?  Then he will be just fine...
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted Today 9:04 PM (GMT -6)   
In my opinion he's basically saying yes to misery and a second surgery in the future...but that's his choice, I guess. Yikes.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted Today 9:20 PM (GMT -6)   
NewShinyCD
  Hi, its so nice to hear that your doing so well..congrats...I think your advice was right on about the young man.  I really don't know how I would of felt if something like that happed to me at such a young age.  I guess its always the person who is suffering who ultimately decides if they want to go on living that way or not.  For most of us it is a no brainer.....sick of being sick, got to get it fixed... 
 
I think that he will do just fine health wise, but I am just joe blow, not a doc.  LOL    But I am sure the advice given from all of you who have gone through what he is going through, will help a lot....
 
Keep feeling well....Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted Today 10:32 PM (GMT -6)   
please dont let him think he is "giving up" surgery is the ultimate form of winning against these diseases! i just really hope it goes well for him leaving the colon in like that.
And noone will know its there and he will be able to do anything at all that he wants and wear whatever he wants also. If those are things he is worried about
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted Today 10:43 PM (GMT -6)   
Its sounds like he is looking for a happy medium? I hope he finds it but ...the odds are not in his favor. I had crohns colitus. My colon is gone and "good riddens!" Worst case senario...he has the surgery, changes his mind, and schedules another surgery to finish the job? Best case... they remove most of the inflamation and provide him "temporary" relief from his crohns..I wish you and him all the best...
37 yr old woman diagnosed with crohn's colitis 1998.(symptom free for 10 yrs.) The last two yrs. Ive been on prednisone, Imuran, remicade, and humira. Had surgery and got permanent ileostomy may 28th 2010. 19 yr old son also diagnosed with crohns disease..


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/20/2010 8:46 PM (GMT -6)   
I hope your son's surgery went well today. For me, this is the cure that I prayed 7 years for, and I thank God every day for it. :-)
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

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