Hi lovethatgrey!  Welcome to the site, it's one of the best and Eric really knows his stuff.  I am 68 and had my colon removed and Stella (my Stoma' s name) created on Jan. 27th of this year. I too was scared and didn't understand what life was going to be like from then on.  I was plagued with horrid leaks at night. Got tired of showers, laundry and floor cleanup in the middle of the night. IT DOESN'T HAVE TO BE THAT WAY!!  Get yourself a qualified ostomy nurse. Maybe your hospital or doc will recommend one. It was nearly 8 months before I was told to do this. I found that information and appliances supplied by the hospital were often incorrect or outdated. They are on a "one size fits all" mode, and it just isn't so, we are all different with different requirements. This is where the ostomy nurse can guide you best.  Since I have worked with her more and more things have gotten better to the point that this week I have gotten 4 days out of the appliance and 2 to 3 days out of a pouch (I average draining mine 2 to 3 times a day which just isn't too bad. I am no longer afraid to do things or go out with friends for fear of embarrassment.  He will get better, he will be able to handle it. Just be a bit more patient than I am 😁 and the biggie, if you have questions or concerns post them here there are probably several people who have had the same issue and are willing to share their experiences. You can be absolutely open and candid here, there is no judgement,just compassion.

Again welcome and I assume the grey in your user name references hair color, but, you are a bit behind.  It is now a designer color called "arctic blond".  Best regards,Barbara 

Oh, I forgot to tell you, drop into the "Lounge" forum. A lot of us hang out there and it is the place to talk about pretty much anything on our minds. I feel like the people I have met there have kept me grounded a bit. I have been through a lot the past few weeks and they have been the rope I was hanging onto.

Hi Barbara!  Thank you so much for your reply.  I think I have seen some of Eric's youtube videos and they are VERY informative!  My husband will have to have his colon and his rectum removed is that what you had done? I am just so scared for my husband.  He is 65 and in very good shape except for the UC.  I fear he won't heal as quickly as someone younger. How do you find qualified nurses? Would we go thru the hospital or a google search on the internet for one in our area?  It is encouraging to hear you are doing so well.

PS: the grey in my user name refers to my African Grey parrot LOL.  Artic Blond!!! Ha!  That's great!  Love your attitude!

Hi Karen and David.

I also had really bad UC when I was about David's age. I too was very afraid when nothing worked ( all the pills, injections & infusions). I was told 'Get to know your surgeon'...well, OK. I was living a terrible life and my husband was completely devoted to taking care of me. 

My only regret about my illiosotmy is that I didn't have it done sooner.  It is a wonderful life saving and positive step. It does take some time to adjust, but like Barbara said.. it really works!

The surgery wasn't too bad either..three days in hospital.   My first feeling on waking up from the anesthesia was one of relief. I could now sleep through the night! I did have a home nurse come for a couple of weeks, so ask about that. Also, you will want to see an ostomy nurse before the surgery so she can figure out the best place. to put it . Not one size or place fits all. Scary, but worth it.

About six months after my surgery, we went to Hawaii, and have been back there again, and then we went to Spain. early this year.  We are  planning a trip to New Zealand now. I had spent three years within ten feet of my bathroom. THIS is MUCH better. And, I am not sick at all anymore. No drugs.

Any more questions, just ask away. Like Barbara said...someone here will be able to help.

Remember, it will be part of you, but need not define your future life.

Hey.. we just posted at the same time. Must be a good thing.

Hello Karen & David. It may not seem like it at the moment but this is the first big step to a new and better life, Did you notice the title at the bottom of this page the one "Be Inspired" well fear is not knowing so ask plenty of questions to the folk on  this forum and Eric, be armed with those when you see the Doctor, come back with more questions to the forum. Having a good site/place on Davids tummy for the stoma will make wearing and fitting an appliance much easier, this is the type of very simple question that's important to ask Dona is right to meantion that. Keep asking and Welcome you both

Hi again 😀  I still have my rectum, but I just came home from a hospital and while I was there I was pleading with my surgeon to remove it. He told me I am not to that point yet. My sigmoid colon was removed and I have a colonostomy.  As for a nurse, Diana's thoughts were good.  Ask your surgeon, ask your hospital, ask your primary care doc and most assuredly ask for your home care nurses. I found mine through home care called "Visiting Nurses Association".  I am one of those self sufficient people who thinks they can do all things myself.  NOT!! When I finally accepted the help things went so much better.  If your husband is in good shape, i dont think you have much to fear. I have heard about people who have had this that are from infants through those who are in their 70's and 80's.  It also helps me to havea good sense of humor and poke fun at it.  I.e.  Eric has a tee shirt Thad reads "No Colon : Still rollin". I want one.  I also tell people that i am a loyal member of the "Butt in the Front" club.  And I have heard people refer to the removal of the rectum as joining the Barbie/Ken Butts.  So laugh, in fact lol really loud. You are in control of that aspect of this issue.  Honest it will get better

Hello Dona,

Thank you so much for your reply.  Reading what you have to say is very  encouraging.  Did you have both your colon and rectum removed?  David will have to have both removed.  

That is fantastic that you went to Hawaii 6 months after your surgery.  Did it take six months to heal or something sooner  (I know everyone is different)? 

David loves to do yard work, exercise and things around the house.  Will he be able to do sit-ups ever again or ride a bike?

I have read there are deodorizers that will cut down on odor.  Are the odors only when you empty/change your bag or all the time (for example can others detect an odor)? David usually wears a belt when he wears pants can the bag be tucked into his pants without any leakage as long as he empties as often as necessary?  Is it possible to accidentally roll over onto your pouch and it burst at night?

Would you be open to a telephone/facetime conversation with both my husband and me?    If so, send me a message and I will send you my phone number and a good time to call.  I tried sending a message but I wasn't able to.

Thank you so much:) 

Barbara,

I'm a little confused.  So you had your colon removed but you still have your rectum?  Do your intestines empty out into a bag?  If so why do you still have a rectum?  

Hi Karen and David---- Welcome.. If your husband is in good condition-he will do well after the surgery.. I am amazed how lucky most people are afterwards.  

True, it is not what we want!!!!!!!!! but end up having.. There is life with this--Look at Dona!! I wish I were she,, (I have another issue that keeps me home bound-for now) but she joins many others in her travels ....... On the lounge, we just kick it up a notch!! Let it all hang out so to speak........ Use your imangation....... Let your husband ask his questions with the guys-- HE can also use the private message to them also if need be- (I sometimes do if I just want the talk between me and them) 

It has been 3 years for me, and I was so lonely and scared to move forward--this blog helped me that I am not alone.. Also, I have a great support group I try to go to.. 

Make sure that HE can change his own appliance before coming home.. His body and He will know when to change-ask the proper questions after this surgery.. How HE feels about pouching systems..  etc.  We r here to help-- and respect each other.. We r a family of Ostomates.. 

It is great that u are involved with this.. I am pretty much alone on this issue of my health-IF I couldn't do it, (my dear husband is rather a "white coat" fobia -sp-) I would end up in a nursing home - just for that- (I WILL FIGHT LIKE HELL NOT TO) and I have been in a few-and they do it when THEY can-not when I need it!! I had my surgery at age 64-had a rather hard time -- -- If your honey is in good health other wise he will do well-VERY WELL!!  and this blog is a great help- He is not alone.. I am so happy that I found this.. He has a better start than most of us going into this.. And you too- Remember, the care giver (you) is the one that suffers most. it is a hard job.. Don't show that your upset- You and he will go on seperate roads of this--for a time-but will come of an understanding mid way--- He is a very lucky man to have you by his side- If u check into our "members" there are our stories.. 

When is his surgery due?? I/we will like to help u both through it if u don't mind.. Check out the lounge!! Open 24-7.. :-)  Good Luck!! 

yes you are correct. I had my sigmoid colon removed which is the descending colon they call it. But they left a they call it the stump that is my rectum. The idea is that perhaps in a couple of years if things calm down a lot they may be able to reattach everything inside back together again and then I would not need the pouch. Right now I do have a pouch and I do use it. The thing that I've been told by my doctor and I've also been told by other people I know who have ostomies that after a couple of years I probably won't care about it that much and will elect not to have the reattachment. That's a pretty common thing to have happen. It gets to the point where the taken care of the pouch and all that is a whole lot less than going through the major surgery of having things hooked up again. And I know that that's the direction that I'm leaving right now. I still have Diverticulitis and colitis in the stump and that causes some pain and some problems so I'm just a thought that I want it gone just get rid of the whole thing. Hope that

Hi Karen that's a very positive idea and step to take

Hello again,

I am happy to be of some help. It is confusing and scary, but it does work. Amazingly enough!

I had a subtotal colectomy. They took all my colon ( it was a useless mess) and part of my rectum. I am left with a rectal stump ( not a pretty picture in one's mind). They do leave the stump as it help to support the pelvic floor. I was never a candidate for reattachment. I think they hold out that possibility sometimes, just to make it sound more appealing. I do not have enough of a colon left for that to work, I don't think. 

It didn't take six months to heal, the actual stoma  but it takes some time to both recover from the surgery ( so you are confident with the new you) and also to recover from the illness that led you to this outcome. I was very sick by the time I got this surgery. That is one reason I wish I had had this surgery  done  sooner. I tried all possible infusions and injections and was still loosing weight & very ill. And the medications were getting harder and harder on me ( like your medication induced Lupus..had to look that one up!).

I was able to swim in the ocean in Hawaii  ( went in a shark cage too). I slowly regained almost all of my strength. I walk every day and also swim ( yes! you can swim). I don't know about sit ups , but bike riding would be great.  I think gardening would be fine too ...Maybe not weed pulling? Ha ..who wants to do that? Maybe ease off on the bungee jumping too.

About oder. There is really not that much. Especially with an illiostomy. The output is thinner and shall we say less fragrant than regular poop. Its only been in your small intestine, not your colon ( thats where the water is removed from poop and there is more bacteria). You have to increase you fluid intake.

We all experience leaks from time to time. Thats just how it goes. It does get better over time.

As your husband heals up the shape of the stoma  will change. This sometimes requires new types of appliances or a different brand. Eric's site is wonderful for this. He has reviewed so many.

Another source of info are the manufacturers. But you will not leave the hospital without a small supply, the knowledge of how to use the things and contacts for suppliers.  You will also probably have the email or phone number of the ostomy nurse who trains you.KEEP ASKING QUESTIONS.

Also, If you are in the US and on Medicare. They will pay for almost all of your supplies. Otherwise, check with your insurance. It can run around $400.00 per month or so, so this is a serious consideration. Find a supplier who bills medicare directly.

I am sure others here have more info on other ways to get and pay for supplies. And each country is different.

I am not a very good phone talker. E mail is good though ( Eric can set something up, I think ... I don't know how).. I am not of the digital generation.

I decided long ago I could feel a bit bad about getting sick ( very occasionally)  but I do not ever feel bad about being cured.

You can BOTH get your lives back.

Karen, Dona has it perfect!! My colon is removed and have the rectum left-not cancer- just a big mess! Didn't know that I was so sick-- Just a surprise-But if u read through-people that have been sick for years, they feel better than before with all the pain etc. before hand. I am on medicare-I also have a second insurance Untited  health- Coast me 5,000 dollars per year. (went up) but worth it!!  I use Byram supplies. 1-877-902-9726-They have pretty much of everything and if not can get it for you via special order. Call them and they will sent you a catalog. They will help you through anything.  (like connect the colored dots)You will proberly and should have a private  nurse in after David comes home-SHE/HE HAS to do the ordering while she/he is there. I suggest that you order monthly- and no pre cuts- U cut the wafer..  Until you guys are in favor of what is needed.  This also helps (monthly) as if u don't use up your order, you have extras left overs. :-) YOUR allowed 20 per month.. I believe. Get samples. Byram will give you the phone numbers of the companies.. OR I can give them to you.. take in Eric's Vidoes -sp- 

Waffer/barrier is what sticks to your body and attaches to the pouch-- this is a first learning.. Took me so long to get that through my thick head. Your doing right here- at least your not going into this blind like me. All this will take time-make your own adjustments as u see fit.. The best medication is REST for you both-- I will send u my quote------------ go by it.. slowely.. My very best to you both, Marcie........... 

The smell?????? Nothing like it was before!! I pass by the bathroom after my husband and that is an ever lasting_________________!! Not to worry.. David will do well with all his adjustments.. And you will also-- 

My body-what is left of it, CAN be reconnected, But at my age "68" advise not to do so, as we age, our inners age, and it would just be another surgery and some people end up back on the "bag" Another surgery----------- 

David and Karen,

When there is change,

Expect a difference,

When there is a difference?

Expect time to accept............ 

My Best, Marcie.

Hi Karen and David, 

Thanks for joining the forum. 

I had surgery to remove my entire colon, rectum and anus in two separate surgeries. 

I have written abouty hospital experience and recovery, but my experience was unfortunately, not very typical because I had some trouble with the wound VAC I was on. 

Most people find bother surgeries relatively "easy" to recovery from, but it really depends on how sick they were before the surgery and whether they've had any complications. 

Please, continue to ask questions and find support. Many of us here have had at least one of those surgeries 😀

Hey!

Welcome to us

Your husband is a lucky guy to have such a good wife. You care.

Regarding after surgery healing,  now is not the time to sweat it. 

Personally,  my healing went on for 10 months.  Funny story for another day. Needless to say,  my lawyer said that I should not sue. 

I am sure that his healing will be much shorter. And that you and he are on a good path to the future .

Keep in touch .

Thank you all for responding.   This is where we stand.  David went for a colonoscopy about a month ago.  Several biopsies were taken and sent to pathology.  When the pathology report came back we met with his doctor to hear the results.  Negative, no malignancy indicated from any of the biopsies taken.  The Dr. made a point to tell David that his colon and rectum needs to come out and to not wait that cancer could be there just hiding.  He ended up referring David to another gastro and sent the pathology report to them.  This gastro was going to do another type of colonscopy (sorry I don't recall the name) where his colon could be painted or lit up and she could then remove any/all lesions of the colon and be put on an aggressive biologic to try to get his colitis into remission. David called the gastro he was referred to to make an appointment.  They took one look at the report and said he needs to meet with a surgeon that his colon and rectum needs to come out.  On monday at 8am we have an appointment with the gastro and at 10 am an appointment with the surgeon.  We are considering a third opinion but there seems to be a lot of urgency.  It's really hard and he feels like he is being pushed into surgery.  Normally he cannot leave the house until  11-12 and tries to watch what he eats.  He doesn't feel bad and actually feels ok for the most part.  So confused.  

Morning Karen, you really must feel like the world is pulling you six different directions at the moment, I had my stoma as a result of crohns so my experience will be different, but other forum members will be back to you on your post. Going back to your first post and will David be able to do all the activies he enjoys the simple answer is yes. I think the idea of having a chat with Dona and Eric is a brilliant idea and would be a great way to be armed before the visit to the Doctor