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I am looking for feedback from women about facing a decision to have a permanent ostomy... or comments/ feedback about things after having an ostomy.  What were your biggest hurdles, concerns, frustrations?  What changed?  what was frustrating or uncomfortable to do?  What was impossible to do?  How did you handle body image/ intimacy?   Even hugs and affection?  I am in my mid-30's, haven't had children due to severity of  Crohn's disease for more than a decade.... and  the docs now say that a permanent ostomy is the only alternative to muddling along with my current meds <which work at about 20%>  The ostomy may not even resolve 75% of my symptoms... and of course - Once the Colon is gone, you don't get it back.  My sibling has a Jpouch and is healthy... but none of the docs say that Jpouch is an option in my case.  Feeling low & scared of an ostomy.

 Reply posted for katya.

If you have questions or just need someone to talk to here is my email address: nicholemarie13@yahoo.com.  When I had surgery I had no one to talk to that was close to my age that had gone through what I had and I had a really hard time dealing with everything.  I would hate to see anyone have to be in the same situation.  Good luck!  Nichole

 Reply posted for katya.

Advice... expect to wake up from surgery mad and upset (possibly in a lot of pain like I did).  Remember the first few months are the worst because you are trying to figure out what "appliances" (ostomy supplies) work best for you.  Get all the free samples you can and try each of them out!!!  What works for me might not work for you!!!  The first two months were probably the worst for me because my stoma kept decreasing in size and my ostomy wouldn't always fit very well and then break (typically while I was sleeping).  Utilize the Ostomy Nurse at the hospital you have the surgery at!!!  If you ever have any questions call them because that is there job and they will do whatever they can to help you.  HAVE A SUPPORT STRUCTURE IN PLACE!!!!  This is sooooo important because if I hadn't had someone to cry to I probably would have gone crazy.  I was in therapy for a year after surgery- which helped to an extent.  Also, there are "pouches" that are closed and do not require cleaning!!!!  DO NOT let a nurse at the hospital tell you different!!!  The only time I have ever used the reusable pouches is when I've had surgery and I wasn't awake when it was put on me!  Check out your options and what your insurance covers!!! 

My boyfriend, who was trying to get me to smile after my first surgery said, "Before you had surgery you spent 1/3 of your day sleeping, 1/3 of your day awake, and 1/3 of your day on the toilet!!"  Sad thing is, he was right!!  The upside to the colostomy is I can change it anywhere (and I do mean anywhere) and if the bag is full I'm not running to the bathroom like I had to in the past without the bag.  I have 1/3 of my life back.  Recently my Crohn's decided to flare its ugly head again and I've been really ill the last two months.  Surgery for me wasn't a cure all but it gave me almost three good years that were pain-free.

 Reply posted for katya.

hi,

three years ago this month i had my first surgery which left me with 8 inches of colon- i have peri-anal crohn's colitis.  a year after the first surgery i had to make the decision to have the remaining rectum and anal cavity removed because it was dying.  i have a permanent colostomy.  i spent my 27th birthday in the hospital after my first surgery.  the decision i made was really hard but necessary because if i wouldn't have choose to do what i did i would have ended up having emergency surgery not to mention all the pain that once i recovered was no longer present.

can i say that this has been easy... *** no!!!  i've dealt with depression sometimes severe but what i have found is that the more i talk about my situation and what i have had to live through the easier it is for me.  if i met you on a plane and we were sitting beside one another and started talking i can almost guarantee by the time we made it to our destination you would know i have crohn's disease and i have colostomy.  you wouldn't believe how many people don't know what a ostomy is!!!  also, i stay as busy as i possibly can so i don't have time to dwell on the things i cannot change.  this is my life and yes it may be a little different than everyone else's but its mine and i will make the best of it! 

 Reply posted for katya.

katya,
Best thing that has ever happened to me. I was given a permanent ileostomy in 92. I wear teddies that snap at the bottom when I'm being intimate with my husband.
I was diagnosed with Crohn's in 86, now I go thru each day with a positive attitude no matter what. I'm not 6 foot under the ground and to me that's all that matters.
My diet is still the same, I've opened 2 businesses since then and looking at another. I live a simple life, trust God to get me thru and that's it.
I've had multiple surgeries, and a lot of remissions but I look at myself as the glass is half full gal, not half empty.
Connie Lou

 Reply posted for katya.

Hi Katya:  This is my first time on the CCFA website forum.  I am 62 yrs. old and was diagnosed with Crohn's when I was 19.  Living with Crohn's for over 40 years has been a challenge, but I'm alive and well.  Been married for 40 years to the same guy who was right there with me when the Dr. told me I'd have Crohn's the rest of my life.  There are many guys out there who will support you and love you, no matter what.  I have been hospitalized many times and had several surgeries.  I did not want to have an ostomy as I was told it was not a cure for Crohn's.  But after a diagnosis of Colon Cancer in 1997, it was time to take action and do it.  I was very scared wondering all the same things you are thinking about now.  I asked my Dr. if he could refer me to a patient who I could talk to about my concerns and that really helped me pre-surgery.  I went into it with a very positive attitude knowing it was going to save my life.  What I did not know, was that it would actually improve the quality of my life.  No more urgent bathroom stops or excruciating pain.  It takes some time to get used to and I had my share of accidents.  But changing my wafer and pouch every few days, became a part of my routine. 

 Reply posted for alanschachter.

Alan, I feel that you are pushing your agenda on people - even when they ask specific questions not related to your responses.  Please be respectful of the forum.  I was asking for feedback from women in a very specific area about colectomy and ostomies.  And you are pushing specific diets and treatments that could potentially be harmful. 

 Reply posted for katya.