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Seeking those in a similar situation

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

Diagnosed with Crohn's in 1982; colorectal cancer surgery resulting in a colostomy 12/2008; now facing complete removal of colon and living with an ileostomy. Having a very difficult time not only physically but emotionally as well. Would like to find others for mutual support and information sharing. Thanks

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Greg,
Had an ile, for 6 month and i have to say it was not as bad as a colostomy, I know many live full lives with them. So give it a shot.

Winney

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

I had a ileostomy for 3 mths but haven't been faced with this as a permanent thing. I guess if that is what you need to do to live, then it is no question and we would just have to learn to live with it. If this is the only way to ensure you will not get this again? Why do they want to remove the whole colon?

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

Having "the bag" as permanent thing has been completely debilitating for me. As to the removal of the remainder of my colon, the "logic" is that it is the only way to assure that colon cancer will not return. That makes sense but I have consulted 2 surgeons and they agree it is the best option. One of the scariest parts is they both also agree this will be much more difficult than the first surgery - I will have to be cut whereas the first was done laproscopically - and they recovery will be longer and much more painful.

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

I had a temporary ileostomy for about nine months, the first six were frightful. I now enjoy a permanent ileostomy. Wait, did I just say enjoy. Okay, that is the first time I have ever said that or written it out as the case may be, but the important point is that compared to the Depends, creams, ointments, baby wipes, being shackled to bathrooms and having to take serious meds to travel and all the other crap (sometimes literally), "the bag," in my experience, has been way better. My wife uses the words night and day a lot to describe the change. While still being expensive, time consuming and a pain, I have a life again! Now if only I could find a job.

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

HI Rick. I appreciate your input. While I completely understand the differences of the before & after, even the "after" hasn't been that good for me. The big problem is a total lack of control - if I want to do anything during the day I cannot eat, then when I do eat in the evening the "flow" starts and most times will not stop for several hours sometimes going on all night which prevents any real sleep or rest. I have recently started Humira and I'm hoping it provides some control as I've been through most of not all of the meds used for crohn's disease. I also relate to finding a job since all of these problems have made this impossible for me as well.

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

Yes, the reason for them wanting to remove the entire colon is to assure that the cancer does not return. I guess there is some logic to this but it is still so stressful and that's been my main problem. I am very bad at stress management, have no support and an aging mother who I am increasingly becoming a caregiver for.

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

I'd like to thank you and everyone who has responded so quickly. It is so reassuring to know there are so many people willing to help. Hopefully this will be a great emotional support as I do not have anyone for any type of physical support after surgery. In fact I am now in the position where I have to be a partial caregiver for my elderly mother.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Post away what's on your mind, if you say it here you get some help.

Hugs,
Pete

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

Thanks for your response. It has taken me a long time to be able to join this site. I have never had anyone to open up to about such private issues and it is very difficult to do so. Any and all help is greatly appreciated as I do not have that in real life. We all need to vent but it is much better to talk with people who are familiar with your situation.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Here is a link to a list of all with an Ostomy.

Within my expression page there is a breakdown by type (there is a link to that in the first post). Feel free to PM anyone on that list with direct questions.

Good luck,

Blake

John23's picture
John23
Posts: 2140
Joined: Jan 2007

The UOAA board has a wealth of information regarding all
types of ostomies.

I have had an ileostomy since 2006, and hated it for a long time.
Now, since my last operation in January of this year, I have a new
ileostomy in a new location, and it was totally unexpected. It is in
the wrong spot, on a hernia, and on a fold in the skin, with a hernia
at the stoma's location.

My advice to you is simple. It was summed up here:
http://csn.cancer.org/node/218006

You'll do fine with an Ileostomy, but it will take six months to
a year before the stoma and peristomal area settles and becomes
manageable.

Ask your colorectal surgeon about the special "packing"
they have to help prevent adhesions. Make sure he knows about it,
and plans to use it. (see: Seprafilm)

You are entitled to other opinions from qualified colorectal surgeons,
regarding the entire procedure, including the need for it. Take
the time while you have time, and make sure you can get things
done properly the first time. You -do not- want to have too much
abdominal surgery. Trust me. Get it done right the first time.

Stay well!

John

greg57's picture
greg57
Posts: 11
Joined: Jun 2011

I can relate to the placement location. Prior to my first surgery (by one of the "supposedly" leading surgeons on the East Coast) they had me stand, sit and lie down then marked my abdomen for the "best" placement. Much to my dismay they didn't follow this marking. My stoma is directly on my waistline and 2 1/2 years later this can still cause a problem. My surgeon told me he would have to move the location of the stoma with this next surgery. While I have come to know this doctor and trust him we will have a very lengthy & intense conversation about placement this time. His examine also found a hernia that has formed - hopefully it will not interfere with a better placement.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

If the location is right at the waist, this might help: Ostomy Armor

The bad news is that they can be very slow to ship and it is expensive, the good new is the product works fairly well, and really does allow for belts etc right at the waistline.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Have you used this device yourself and
are you still using it?

Thanks.

Best wishes,

John

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

But the placement vis a vis my waistline is a bit off.

AncientTiger's picture
AncientTiger
Posts: 130
Joined: Mar 2011

I had a temp. ileostomy about 8 months last year, and it was right at the waistline. That really SUCKED when it was time for me to put on the uniform and return to work... that 1 1/2" belt had to be either WAAAY too low, or I had to look like gomer pyle.

I wish you the VERY BEST of luck Greg!!!!

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I have resorted to using suspenders.

While at first I found them to be "nerdy", I've met
quite a few individuals that are far from "nerdy" and
actually fall into the look of my family from Sicily.
(You talkin' to me?)

Seriously, the look isn't bad at all, and with a slightly
larger waistband, there is a comfort that is unbeatable.

The problem with most of the devices that fit over
the ostomy appliance, it that they usually make checking
the appliance (while away from home) more difficult,
and can/may be hazardous if wearing a seatbelt with it.

Most individuals have not witnessed what happens
in a major accident, and are unaware of the damage
to the body under high "G force" conditions.

Good health!

John

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

Having an ileostomy probably was the most scariest thing I've ever been through. Yes, it was difficult to get through, but having a reversal, sometimes longing for those days were so much better. You will get used to "your new normal". It might take time, but no one ever will know unless you tell them. We have 8 children and only 3 knew and it's only because of me saying something. The other 5 kids never knew. This will save your life - go for the best possible chance.

Kim

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