Just had ileostomy in Nov/07...having difficulty physically and emotionally...

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New Member

Date Joined Jan 2008
Total Posts : 2
   Posted 1/8/2008 7:04 PM (GMT -6)   
Hi all,
I am a 38 year old female diagnosed in March 2007 with a Familial adenomatous polyposis...apparently a genetically carried disorder even thought there is no history of polyposis in my family.  I underwent a subtotal colectomy in June/07.  Recovered ok until September, then readmitted to hospital with a bowel obstruction.  Tests during my hospital stay showed that the remaining portion of my colon had also developed polyps and I was scheduled to have them removed via sigmoidoscopy in October/07.  Removal via sigmoidoscopy did not occur as there were substantial changes to the remainder of my colon and abnormal growths were forming around the rectum.  I underwent surgery in November 2007 and am now fitted with an ileostomy and a whole lot of emotional and physical baggage.
I am still enduring lots of backside pain as my rectum was removed.  Is this normal?  Also, my monthly cycles have become so painfull and heavier since last surgery.  Is this normal?  My recovery from the subtotal colectomy seemed to be much easier.  I really don't know much about all this and would appreciate any advice. 
I am feeling quite depressed, have been seeing a professional for advice, but still quite down.  Does this get easier?  I have two children, a **** and a 5 year old who are very comfortable with my situation, as is my husband...all are very supportive.  However, I find myself being very impatient, angry, b**chy, and generally very hard to live with.  I hate feeling this way and hope it will not continue for very long. 
All advice is most appreciated and welcomed!

Regular Member

Date Joined Jan 2006
Total Posts : 242
   Posted 1/8/2008 8:17 PM (GMT -6)   
faye69- we are in different situations but i just got an ileostomy in november as well and am also having a bit of a struggle with it. emotionally, it's been a big adjustment and i don't think i'm anywhere near the acceptance phase, more in denial i think. i've gotten pretty depressed on and off and it helps to remind myself of the positive, in my case i would have died without my surgery. i don't know anything of adenomatous polyposis, but i've got lots of strikes against me with genetic diseases. my mother died of familial ALS (lou gherig's disease) and my father just died from colon cancer.
they left my rectum so i'm not sure if that pain is normal, but i know someone who also had kept their rectum who had terrible pains. as far as period pain, i'm pregnant and was when i had my surgery so i haven't dealt with that yet.
are you still on any meds? they can really effect your moods. i know when i was coming off pred i was so sensitive and irritable. i've thought about trying to talk to a therapist even though my husband has been amazingly supportive, but i've already got comfort from reading these boards about all these people in similar situations. i'm sorry i can't be of more help, but know that you aren't alone and i hope you are doing better soon.
29 yr. old female
diagnosed with pancolitis uc 7/05
emergency ileostomy 11/07

vitamins, TPN
pregnant~ due in march

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 1/9/2008 9:26 AM (GMT -6)   

Welcome to HW.com. I have had my ileo for quite a long while, but I do remember the discomfort of the rectum being removed. Some folks breeze right thru that removal; however, IMO I believe the rectum removal hurt worse than the abd. surgery for the ileo, etc. Can you take warm baths? Does that help the rectum pain? Is it constant pain? Or more like phantom pains where the body still thinks you have a rectum?

I am very, very prone to internal scar tissue (adhesions) and yes, I experienced a lot of pain with each period after my surgery. Come to find out, I had endometriosis pretty severe and hormone therapies didn't work for me. I know there are a lot of folks on this forum who breezed right thru the surgery w/o any issues. It is a very individual thing.

Keep in mind that you had a very major surgery on your gut, and all your internal organs, etc, are still trying to adjust to a new placement. I know it is hard to be patient, but be sure your surgeon knows of these pains as well.

I don't think any of us would choose to have an ileostomy just because we wanted one, but the benefit of being alive and pain free in time is the positive aspect of having one.

The surgery you had was life altering for you. You lost a major body function. And it is ok to be frustrated over it. But you have to face it and make it over that hurdle and move on with life. I've been there. It took me a while to become a happy person, but once the healing was over, I've never looked back. You too will be able to adjust in time. Hang in there and keep your chin up.

I hope each day becomes a little better for you. Have you been able to get out and walk, maybe thru a shopping mall, etc.? Getting back into a routine, thru this healing process will help.

Please feel free to ask any quesitons you might have. There are a lot of caring, compassionate people on this forum and no question is out of bounds!
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Feb 2007
Total Posts : 420
   Posted 1/9/2008 11:32 AM (GMT -6)   
I've been there! And I go back there sometimes, as well. The first three months after my ileo were for me, the worst three months of my life. I was severely depressed, I cried at the drop of a hat, and then lashed out in anger the next moment. I thought I would never get better, never learn to deal with the horrible bag. BUT, it got DID get better. I slowly became accustomed to this new way of life. IT ain't so bad. I am enjoying feeling good now. You'll get there. It will take time, but you will get there. For now, just know that you are NOT alone.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
Surgery August 24, 2007. Home now!

Regular Member

Date Joined Aug 2007
Total Posts : 185
   Posted 1/9/2008 4:01 PM (GMT -6)   
I had a TC Oct 07. The surgeon left 3 inches of my colon and reattached it to my rectum.

I have been through a lot in my life but I have to say that surgery was the hardest thing I've ever done. But I know it has not only saved my life but given me my life back.

I was in a lot of pain after the surgery and became very depressed and felt I had lost hope. But at my first follow up visit the surgeon gave me some Symax which helps the small intestines relax which helped relieve the spasms and cramps. Once I was able to get the pain managed and my body healed it helped my emotional health/outlook.

Being depressed after major surgery like this is normal. It takes time, but as your body heals and you begin to feel better it will help your emotional health.

Please let us know if you have questions that come up during your recovery process.


Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 1/9/2008 4:06 PM (GMT -6)   

I am sorry to hear that your recovery has been difficult. You can meet several other FAP/colectomy survivors at www.j-pouch.org I don't think there are any FAPers on this site so if you want to network with others who share your diagnosis please check that site out.

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

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 1/9/2008 6:03 PM (GMT -6)   
it is normal to still have pain after the rectum removal surgery. it takes a while for that to go away, you are only two months out from the surgery, for such a major thing that's a short amount of time. My periods were really really heavy, and lasted a long time! i even had to wear those extra protection night time pads all the time! but they subsided over time, and are still a little longer than usual but not heavy at all.
Personally, i thought that the pain of having my recutm removed was not as bad as the pain down there from having a child. But it did hurt at times pretty badly for a few months afterward. It is a hard thing to deal with emotionally, someone said on here that people go through the stages of grief when they lose a body part. The first is denial, then i think anger and pity and then acceptance, i think i left some out though, lol.
Anyway, it will get better, i promise! it will be so much easier to take care of your children, and have a better life.

New Member

Date Joined Jan 2008
Total Posts : 2
   Posted 1/10/2008 1:13 PM (GMT -6)   
Thank you all soooo much! I do appreciate your kind words and encouragement. I know it will take a while to get over this, but it's nice to hear that others have been through this and have had good outcomes. I will continue to check out this forum for advice and you can be sure that I will have many more questions. Again, thanks to all of you and God Bless,

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 1/12/2008 8:19 PM (GMT -6)   
It does get so much easier, especially when you have a supportive family to turn to. It took the wound where they removed my rectum 10 months to completely heal up, so you're still healing from surgery. Give yourself time to heal and adjust. You'll get so used to having an ileostomy that you'll actually forget that it's there. It's true, I promise! Hang in there and feel free to vent to us anytime! We understand what you're going through, because we've been there, too.
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 1/14/2008 11:15 PM (GMT -6)   
cece is right you will forget about it being there, in fact, today i was cooking and i forgot about it so long that i let it get way too full, lol.
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