Im destroyed...

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Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 3/23/2009 3:51 PM (GMT -7)   
Hi Everyone, just letting off some steam. Some of you know my backround, and you would think that I would be able to handle this but as the subject say's "im destroyed"
I had a colonoscopy 2 weeks ago and finally was able to see my Dr. (gotta love Alberta health care) about the results. I have active Crohn's (duh) and small bowel disease that is running rampant (Dr.s words, not mine) I had a stricture forming and was told that if it hadn't been caught that within a week I would have had an impaction. The worst part of all this is....I was in to see if I was a candidate for a colostomy (I can deal with pain/cramping/sickness, just NOT the sudden loss of bowel contents any time my rear end feels the need to prove itself) and have now been told, that no, I am not. I guess after years of thinking that I could get one, and having hopes and dreams of crawling around Egypt and riding my motorcycle (just bought a Ducati) or going to see a play or even going to collect cans on the highway (if I wanted too...) and not having to worry about where a washroom is.....this news that it is not possible has completely destroyed me. I have been crying ALL day, so much so that my eyes are swollen and I have ran through an entire box of Klenex. My co-workers are studiously ignoring me or sending me the "I am so sorry" look. I have to go to the surgeon on the 14th to see about a ileostomy. Do I want this?? Im so confused, and now im crying all over again.
Thanks for listening/reading.
RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 3/23/2009 3:58 PM (GMT -7)   
Unfortunatly I dont really know the difference but if they are both bags wouldn't that avoid the need for the restroom? Either way, I am sorry you are going through this and I hope you find an answer soon!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 3/23/2009 4:30 PM (GMT -7)   
I don't know the difference either...but I don't think you should say your dreams aren't possible...I really feel like you could do those things if you wanted with the right care and right doctor..
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Veteran Member

Date Joined Nov 2003
Total Posts : 518
   Posted 3/23/2009 4:43 PM (GMT -7)   
A colostomy is when your colon is diverted out through your abs and an ileostomy is when your small intestines are diverted out through your abs. You have a bag either but with the ileo. the output is looser. If you have more questions...or want more detailed answers feel free to post on the ostomy boards. :)

Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 3/23/2009 5:02 PM (GMT -7)   
I had a colostomy for 3 years and and have had an ileostomy for the past 12 years. I can't tell the difference. Go for it and be well!!!
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade and iron. Feeling much better!
God Bless. Tony

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/23/2009 5:12 PM (GMT -7)   
Hi Having any surgery is a difficult task to take on and I am hoping that things work out for you and let us know how your visit goes.. perhaps it will improve your life to be able to do the things that you want to in life.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 3/23/2009 7:00 PM (GMT -7)   
Sorry for what you're gong through Allison77, I'm in Alberta too so I just wanted to give you a tip about colonoscopies in the future, demand that you talk to the GI right after the procedure rather than having to make an apt weeks later for your results, it's what I always do (that way they can't charge ABHC for 2 visits regarding one appointment, some docs are sneaky but don't let them get away with it).
My bum is broken....there's a big crack down the middle of it! LOL :)

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 3/23/2009 8:19 PM (GMT -7)   
You (we) cannot let this disease get the best of us. I know it is really hard at times but I do believe in having a positive attitude,outlook. I won't let this disease keep me from doing what I want to do in life and neither should anyone else.
I'm sorry I'm so harsh, but this disease makes me angry at times.
Don't let it win!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Stanley and me
New Member

Date Joined Mar 2009
Total Posts : 3
   Posted 3/24/2009 7:46 AM (GMT -7)   
I've had an ileostomy for 6 weeks now because of my crohns, they're not too bad once you get used to them. The output from a ileostomy is more frequency and a porridge like consistency (depending on what you eat really). With a colostomy I think you only have to empty the bag once a day, but the stoma is a tad bigger than an ileostomy (mines is 30mm just now). You can shower without the bag on with an ileostomy if you feel brave, and you can bath and shower without the bag on with a colostomy. I can't remember everything about the diet, but I know I can't eat coconut or nuts.

It's probably too soon to tell with me, but I read about many people saying how much more energy they had after the op.

I know it's hard, but try stay positive!

New Member

Date Joined Feb 2009
Total Posts : 10
   Posted 3/25/2009 12:46 AM (GMT -7)   
The difference between a colostomy and ileostomy is the location of the intestine they use for the stoma. A colostomy makes a stoma form any part of the colon (the more colon you have the more formed your stool will be), and ileostomy is a stoma made form the ileum of your small intestine, so your colon is either totally removed or disconnected from your GI tract. The stool output from an ileostomy will be much more liquidy than the output from a colostomy, since the colon is responsible for water absorption from waste.

I have had a colostomy for 8 months and I cannot wait until May when it is reversed. It has severely impacted my life socially (sex and relationships), and given me major self-esteem and depression issues. There are a lot of mental things you need to be confident you can overcome with the addition of a bag. Personally I would not recommend it unless all medication fails, but I am 19 year old college student at a major university, and all I yearn for is to be able to take off my shirt and not have a makeshift toilet attached to my body.

Only 2 more months of the bag for me!

If your entire colon is diseased and you are a candidate for an ileostomy, see if you are a candidate for a J pouch. Your rectal muscles need to be healthy in order for the J pouch to be created (a reservoir is made out of the small intestine to act like a colon and then is connected to the anus, so there is no bag and you can control the bowel movements.

Post Edited (RooR) : 3/25/2009 1:55:30 AM (GMT-6)

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 3/25/2009 2:22 PM (GMT -7)   
You folks are so amazing! Thanks for all the thoughts and wishes. I was feeling so down on Monday, I felt that after all I had been through...enough! Right?? GRRR. Thankfully I have a wonderful husband who sat with me on Monday night while I cried my eyes out and then he got on the internet and started a search for a "bum valve" as he calls it! LOL.  Funny thing is, he FOUND one, in Japan! Am going to head to the ostomy boards!!
Anyway, again, thanks for letting me un-load.
pb4- Thanks for that advice!! I have the gastro. from hell. Really, she is horrible. Just really mean, no patient/bedside manner. At evert appoint. she ask's me a ton of questions, only to ask me the same question's the next time she see's me. Re: wanting kids vs having a ostomy...bla bla bla.
Gachrons- I'll keep everyone updated for sure! LOL. Im just going to have to get used to a new riding position on my bike we think. *grin*
Wolfie- What you wrote was not harsh. I totally agree and 99% of the time I keep an up-beat attitude about everything happening with me. Unfortunately Monday was a BAD day for me. I've delt with my thoughts and feelings and thank you for sharing yours.
Roor- I am sooo sorry! I however am done University, am married to a wonderful man and have the 2 best Pugs EVER. My life in all aspects except for the Crohn's is amazing. There is too much damage to my rectal muscles from fistula's et al. to be considered for a J-pouch surgery. However, I will ask the doc for sure. Good luck with your studies! I was 21 and in school when this hit, I feel for you!!!
RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/26/2009 3:19 AM (GMT -7)   
Hi Your husband sounds like a great guy and seems he is willing to do alot of computer searhing to help you ...glad you have some good home support ...seems we could all have used a bum valve at times... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~

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