Colon and Rectum removal - need to talk to someone

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Regular Member

Date Joined Aug 2009
Total Posts : 32
   Posted 11/14/2017 1:12 PM (GMT -6)   
Hello everyone,

We really need to speak to someone that has had their colon and rectum removed and now living with an ostomy. My husband has been battling UC for years and the unthinkable is about to happen and we are scared to death to say the least. Please private message me your phone number. If you are uncomfortable giving your number out that's ok I'll give you mine.

Thank you

Veteran Member

Date Joined Jul 2003
Total Posts : 1267
   Posted 11/14/2017 3:00 PM (GMT -6)   
Acctually a Ostomy is not the " unthinkable " it's a life saver for many . For me it not only changed my life it gave me a better life back. Sure no one goes around wanting one . But in the end its much better than being sick all the time and chained to a toilet . Taking care of an Ostomy is very simple after a few changes you're like " I got this " .Change your thinking about it . Going in negative won't help him or you . I remember the day after surgery telling my husband " Sweetie we got our life back " . A life of doing fun things again . Join your local Ostomy group . You will meet many people walking around with their heads up high enjoying life . Remember it's not the end it's actually the beginning.

Post Edited (Sugarmarie) : 11/14/2017 1:03:47 PM (GMT-7)

Regular Member

Date Joined Aug 2009
Total Posts : 32
   Posted 11/14/2017 4:25 PM (GMT -6)   
Hi Sugarmarie

Thank you for your reply. My husband is 65 and in great physical health except for his UC. I worry about him not healing as quickly/well as someone younger. Did you have both your colon and rectum removed? My husband will have to have both removed. I've heard more negative than positive when the rectum is removed and more positive than negative when the colon is removed. If it will improve his quality of life if what we will do but it is still very scary.

Veteran Member

Date Joined Sep 2005
Total Posts : 5159
   Posted 11/14/2017 5:20 PM (GMT -6)   
Don't conflate the recovery period of having your colon and rectum removed with the living with an Ostomy after he is all healed up.

He'll be up and walking around in 2-3 weeks without much issue. The rectum is a wound that needs to heal, it will heal slow and be uncomfortable to sit.

3 or 4 changes of his ostomy and he'll be able to do it on his own. Especially after he finds the appliance that he likes the best.

He will have an end ileo so it will function better than some of our ostomies that we have (loop ileos) when we are in the process of getting a J-pouch. The loop ileos are notorious difficult.

After his intestine fully heals it will slow down and work even better, meaning less emptying.

I remember waking up from my colectomy and just feeling so much better, I was in some pain but I finally felt health. My body wasn't poisoning me from the inside anymore.

You're husband may be older but many of us were in much worse shape going into these surgeries and were on high doses of immunosuppressants. Healing does take time but he will feel better when it is done.

He will probably need some help for 2-4 weeks and then he will be able to do most things himself but just a bit little slower, after 3 months he will almost be 100%. The rectum wound could take a little longer.

The toughest thing for me was learning how to sleep with an ostomy, because I am a side sleeper and I couldn't lay on that side with my ostomy.

There are many people on here who have had the same surgery as your husband and are very happy and out living their lives.

I may have been different because I didn't have any issues adjusting to my ostomy because I just felt so much better, I was very happy. I was so sick for so long, I was begging for the surgery. I had already come to terms with the ostomy and having my colon removed before I had the surgery.

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!

Veteran Member

Date Joined Jul 2003
Total Posts : 1267
   Posted 11/14/2017 5:23 PM (GMT -6)   
I have Crohns still have rectum my entire Colon was removed . I have an Ileostomy. 65 is young you speak of him like an old man . He is still very young and this surgery is not bad . Do your homework and get the best surgeon possible even if you have to travel to get the best . Get two or three opinions. Have a certified Stoma Nurse mark his stoma site . They will feel around his stomach find stomach muscles and mark best place for stoma according to his body / waist . How his pants fit etc...
where do you live maybe someone here can recommend a doctor .
Relax breath try not to get your hubby any more worried than necessary.
Sugarmarie A.K.A. Poopy Pants

Regular Member

Date Joined Aug 2009
Total Posts : 32
   Posted 11/14/2017 5:58 PM (GMT -6)   
Hi Again Sugarmarie

I live in Houston Texas. If someone could recommend a doctor that would be great!
Thank you for your all your helpsmile

Veteran Member

Date Joined Dec 2012
Total Posts : 1040
   Posted 11/14/2017 6:07 PM (GMT -6)   
This time 5 years ago I was nearly at the start of the UC flare that ended up leading to my surgery. For me the unthinkable thing would've been continuing to suffer and not having the surgery. I had 2 separate surgeries because I was too sick to get them both at once, even at the younger age of 34. The first surgery removed my large intestine, rectum and anus...and installed my permanent ileostomy. My 2nd surgery to remove the anal stump and sew up my backside became necessary because UC continued to flare in those little bits I had left. My life could not be more "back to normal" aside from living with the ostomy, which has also been pretty easy.

Since my surgery, I have mentored a few people who were facing similar circumstances. One of the women I mentored was a very fit and active 70-year-old, and she bounced back like nobody's business!
6/12:DX Mild Ulcerative Proctitis:quick remission w/1 Canasa nightly
MAJOR Flare began late 11/12
By 2/4/13, UC Severe into transverse colon
Prednisone refractory,little to no relief from enemas or Remicade
3/13/13:Proctocolectomy w/end ileostomy;pathology showed Severe Chronic UC throughout colon
2/26/15:Perineal Proctectomy (all sewn up!)

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 11/16/2017 8:48 AM (GMT -6)   
Your husband is not old, and if he is in great shape, sans the UC, he will do fine. I have known people much older who have had jpouch and ostomy surgery and they are all out living full productive lives.

Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 11/17/2017 4:31 PM (GMT -6)   
Hi! I was two months short of my 64th birthday when I had my operation. I had suffered with ulcerative proctitis for twelve years and ran the gamut of meds. I found my surgeon online, as my GI doctor refused to send me to one, said he wasn't finished trying new meds. Yeah, right...well, let him try them, I was DONE! I am now 71 and enjoying life! Sure the surgery is no walk in the park, but it certainly is a Hell of a lot better than living with the disease. Good luck to your husband. Take one day at a time and he'll be fine. A lot of good advice is to be found on this website.

New Member

Date Joined Nov 2017
Total Posts : 2
   Posted 11/19/2017 9:18 PM (GMT -6)   
I have HAD THIS THING THEY CALL A LLIOSTOMY for 3 Years now... I had stage 4 Colorectal Cancer...
Now that I am feeling better and I can see what this THING is all about....
Feel like crap Lost 63LBS down to 132 Feel like crap....
I HATE THIS STOMA All it does is crap on ME all the time and it makes me sick having crap all over me..
My insurance has spent over one million six hundred thousand dollars on me...


IF you have to get one of these things DONT BIG MISSTAKE ... skull

Regular Member

Date Joined Apr 2008
Total Posts : 63
   Posted 11/23/2017 9:12 AM (GMT -6)   
Sorry that GSWED has had such a bad experience. I suffered with UC for years, was devastated by the need for surgery and like most folks on this site, wish I had the procedure years earlier. Got my life back, feel great and have adapted to life with an stony. I am 64 with an understanding spouse just like you.

New Member

Date Joined May 2014
Total Posts : 1
   Posted 11/24/2017 6:39 AM (GMT -6)   
Hi Everyone.....On Oct 17, 2017 I celebrated my ten year anniversary of living with a ostomy. I am 63 years old. I may know something about living with this. My question this morning is: Do the good and bad days of living with a ostomy last till you pass away? I have good days and some very tense ones. But, all in all I am happy. I am still above ground and taking nutrition. I am also a vet.. We all have a good sense of humor most of the time. I was a medic. Navy.

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 11/25/2017 5:24 PM (GMT -6)   
Going on 11-12yrs here, I can't even remember exactly. Your hubby is blowing it way out of proportion. Once he's all healed up it's no big deal. 20min to change the appliance on a bad day. Being active is not an issue, and not having to worry about where the nearest toilet is a godsend. Travel can be tricky depending where you want to go in the world, just bring double what you need and take it on carry-on. He'll be fine.

The hardest part will be diet, and figuring out how your body reacts to different foods. Some foods will give you liquid output forever, while some will give a solid sticky mess which is also no fun. Either of those make for zero-fun times. For me, a high fat diet seems to work very well, rice for a starch, and limited fruit and veg. Not to say I haven't eaten pizza and drank vodka til I passed out, ha. This op was the best thing that happened to me smile

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Regular Member

Date Joined Jan 2012
Total Posts : 250
   Posted 12/2/2017 8:16 PM (GMT -6)   
You have already did one of the best options my joing this site. It has been a God send to nurses and drs couldnt help me the way this site has. No question is a bad question. Welcome
Aug 2011 half of colon removed from gangrene.
Nov 2011 illiostomy takedown and diagnoised with uc.
Have Fibro, Meniere's,
Had colon removed 12/17/13
J-pouch surgery April 15 2014
Reconnect Dec 17 2014
Have pouchitis since day one.
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