Possible future ostomy..

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 1/4/2009 9:19 PM (GMT -6)   
I'm really new to this and just noticed this board via the Crohn's board.

I have Crohn's disease. Dx Nov 2007 (3 years). It's primarily located in my rectum and sigmoid, but they have found it scattered throughout my large intestines. They've yet to find it in my small intestines. I suffer from fissures, fistulas, abscesses, skin tags (all rectally, or from rectum to skin).

That said, I had a "talk" with my surgeon a few weeks back. He anticipates an ostomy of sorts in the next 5-10 years, maybe sooner if they cannot get me under control.

What I'd like to ask is are there any good sites on ostomies? I'd like to know what my options "might" be when this is addressed. I like to kind of read the info and not have it thrown at me all at once, so when this talk with the surgeon gets more in depth, I hope to be a little more educated on ostomies, basically. This might be 2 years down the road, heck, 2 months, but I don't want to be in shock when the info is re-addressed because it's needed.

Thanks in advance!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 1/4/2009 9:24 PM (GMT -6)   
Oh, and wanted to add that he's pretty certain surgery would require my rectum to be removed and that I would have a colostomy, he said a j-pouch wouldn't work...I can't fully think of what else at the moment, but my memory "might" be refreshed when I start reading into them a bit more...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/4/2009 10:13 PM (GMT -6)   
most people with crohns don't get jpouchs.
Having an ostomy is NOT that bad at all! In fact compared to being sick (i had UC) it's like a walk in the park, with someone carrying you!
It's very convient at times, lol. I know it's probably a scary thought, and that you probably dont' want to do it, but i think once you do it you will be much happier.
I know i am! I can do whatever i want! It's awesome. I hopped in the car Wednesday for a 5 hour road trip to the mountains, knowing there may be places with no bathrooms, with no worries at all! Didn't have pain, didnt have to worry about eating. It is so great to be able to enjoy things like that, before i would have never been able to do that, it would have had to been planned and i would have had to load up on meds to go! i can eat whatever, whenever, and i can still wear whatever clothes i want and do every thing i could do before, actually more, since i am actually healthy enough to get out of bed!
It will help you alot to read the stuff on this board and to see that so many of us are happy and healthy, it helped me alot!
good luck

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/4/2009 10:25 PM (GMT -6)   
You may be an excellent candidate for a colostomy that you would irrigate once a day. This is in a sense like doing an enema, but you infuse a specific amount of water into your stoma, wait and then the water/stool returns and empties into the toilet. No need to wear a bag. You wear a large bandaid (called an Am Patch) to cover the stoma in between irrigation times. My surgeon suggested this to me since my resection was done low and I have multiple bm's each day. For now, I am not electing to have any surgery. But in time, perhaps I will. Right now we do not have good health insurance (very high individual copays), two daughters in college and I need to just maintain things as they are. But my surgeon swears this is so easy (irrigating). I have looked into it but again, for now I am just not mentally ready for that change. There's a website that offers forums to ostomates and one is for irrigating. I don't think we're supposed to post links but the association's name is United Ostomy Assosiations of America. Do a search and you'll find their website.

I did have a temporary colostomy after my colon resection (9 years ago) and it was easy to adjust to. Definitely not the end of the world. And for some patients - it's the start of a whole new world. Freedom some say (from feeling so ill all the time).

You need to do what's best in your case.

But at least ask if you'd be a good candidate for irrigation.

I wish you my best best in the upcoming decisions you'll be making.
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 1/4/2009 10:56 PM (GMT -6)   
Thank you for your information!

LIke I said, we got the "surgery" talk because I've become steroid dependent. I'm off Pred no because it caused high blood pressure and a few other issues that my GI was uncomfortable with. I did a fast taper. I'm functioning, but on daily pain and spasmatic drugs.

I was aware a J Pouch wouldn't work. He told me they wouldn't allow it, so a full colostomy sounds like what I'd be in for. But, I guess I'm looking for diagrams and such to understand it all. I'm a visual type of person.

Marsky - The irrigation sounds interesting! I'll try and google it. Luckily, I've had fairly good insurance. We've stuck with a PPO so we have a max out of pocket of $1500. This would definitely be covered after pre-approval. I really don't anticipate it for about 2 more years, maybe more, but if I continue down the path I'm on, it could be this year. I'm just trying to educate myself a bit..
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/5/2009 6:10 AM (GMT -6)   
Kaycie - I'm glad you have good insurance! My husband works for a small company and premiums have skyrocketed since I had my surgeries, 4 times the price they were 10 years ago - both hospital stays (12 days combined) were $1400, total, out of pocket expense. I cringe what it would be now, 20% at least. And I'm sure my ins. company would balk at ostomy supplies too (they wouldn't even pay for my last colonoscopy, just paid that off in November). I do know you need equipment for irrigation too. But for the specific ostomate this method benefits, it's the way to go from all I read. You have to give it several tries to get it to work right but apparently, people that do irrigate (from the forum on the website I mentioned above) are so glad they gave it a try. It certainly wouldn't hurt to ask if you could do this. Also, if not, colostomies are not difficult to master either. Loads of help right here on this board. I had a wonderful ET (a colostomy) nurse, she took me through a change step by step. She gave me a video to take home too, if I forgot the steps. Now I'm certain all of this info is available online. She gave me so many useful tips, some that I still use today. When I enter a public bathroom stall, I look for two things - plenty of TP and to make sure the toilet isn't stopped up. If either, I keep looking for a good stall. Before even sitting down. You don't want to realize you are out of TP when you need it the most! But one comment stuck with me - she said women adjust to ostomies in general much better than men do. At the time I thought, is this because we have periods? I went thru a phase in my 30s when I had extremely heavy periods that disrupted my daily life. I had to come home, no matter where I was. Wearing a thick maxi pad and super tampon was not enough. By the time I had my cancer I had two children as well. So I looked at that stoma and colostomy bag and thought to myself - okay self, you can do this! You've had messy periods and changed hundreds of messy diapers. And you know what - I just transferred that approach to emptying my bag, changing the wafer, etc. to a new wafer/bag, etc. I was determined not to ask for help (I had a SIL at the time, who's left the family by now, who is a nurse, I knew I could call her if I needed to, but I didn't really want to!). I just took my time and read all the material. And somehow I got thru it all. You will too if you need one. The only time I had a mess was when I didn't have the end clip on the bag, on tight. It leaked. I had to wash a bathroom rug near our toilet and clean up the mess. No biggie. The other time I went thru a complete change, put on a new bag but didn't listen carefully for the click sound to make sure it was in place before a shower. Sure enough when I was washing, I knocked it off. I had a mess again, all over the shower (good place to have a mess!). If I remember correctly, I put on a new bag. Making sure I heard that click sound!

Wishing you well and more replies on this thread!
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/5/2009 6:13 AM (GMT -6)   

Kaycie--this site in itself is a great resource...go back through the older posts and you can find an answer to any question you may have (and some you didn't know you had).  I also suggest the UOAA.org site...you can get links to manufacturers and more!  Check out the websites from the manufacturers for videos/pictures/diagrams some are better than others but it might be just what you are looking for!

I had similar problems to yours and just went through a proctocolectomy about a year ago and haven't looked back!  I used to have alot of pain (I didn't realize it was that bad) and finally live a pain free life...It is important to make your own decision about surgery and that you are comfortable with it...which I think you are on the right road to!  Let us know if you have specific questions:)

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