Having surgery june 11th

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Date Joined Mar 2005
Total Posts : 457
   Posted 5/25/2010 1:12 AM (GMT -6)   
I have a few questions and I am quite nervous.
First of all I will give you a quick run down. I have been on just about every medicine imaginable and have even had trial drugs and nothing works. I am now on 60mg of prednisone and have been for 8 months. It's not working and I bleed pretty much every time I use the bathroom.
My last colonoscopy in July last year showed crohns in the colon and rectum. The biopsies didn't show any in the small intestine. Since nothing else is working my doctor said I must have surgery. They would remove the entire colon and rectum. I think its called a Total colectomy???
Anyway I have gotten some good advice from people on this forum, but I have more questions.
Starting with the surgery I wasn't extremely worried about the ostomy, but will i be in quite a bit of pain when they take the anus??
Also I told my employer I would be off at least 6 weeks of work. I install and repair commercial garage doors. I am alsways lifting things that are over 100lbs or more. Heck the ladder we use is 70lbs. Will I be able to return to work at all or would I run the risk of hurting my ostomy?
Will I be able to eat normally or have to be on a special diet for the rest of my life?
How often do they leak? Do they smell extremely bad? Like lets say I empty it and flush the toilet will the room still stink really bad for a while?
Also how sensitive are they? I am worried that I am always going to have to protect it agianst everything. Seatbelt, playing sports, riding my motorcycle etc... What about bathing? Does that take a long time to do and do you have to change it every time you get it wet?
The only thing keeping my head afloat during all this is that I am going to look forward to having more energy and being able to eat without being in extreme pain.
Any Advice or info weather it is positive or negative will be helpful.
Thanks in advance.

Post Edited (Brian84) : 5/25/2010 12:15:54 AM (GMT-6)

Regular Member

Date Joined Jan 2009
Total Posts : 413
   Posted 5/25/2010 1:46 AM (GMT -6)   
sorry you had to suffer, but now you will have your life back. I just had a total colectomy due to ulcerative colitis. I had the option of doing the jpouch which allows me to reconnect the plumbing w/o having a perm. ileostomy. Although, I am seriously considering nixing that and just going for the perm ileostomy (pouch). You will most def will be able to return to work. I am a fireman and do my duty with an ostomy. You will eventually be able to eat normally although you may want to watch out with certain foods like popcorn and nuts. They will explain this to you and with other foods you will find out what bothers you or not. Regarding the pouch .... yes, they will leak if you don't take care of them ... like letting them get too filled up. I have had that happen to me twice already. Won't lie, it does smell bad, but it depends on what foods you eat and if you are using methods to deordarize the pouch. You will be able to obviously use a seatbelt, play sports, motorcycle and even take a shower and go in the water. I don/t change it at all when it gets wet. It is a big change but give yourself time to adjust and just remember you are going to finally be healthy. I am sure there are plenty of other folks here that will have more answers. Good luck and be well!

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 5/25/2010 12:47 PM (GMT -6)   
Hi Brian84, such good questions!
1) I had my rectum removed and sewn shut. I had no pain. It freaked the heck out of me when I was finally able to roll over and feel the stitching. I had horrendus thoughts about what it looked like. When I got home from the hospital (I was in for 9 days....had reaction to blood transfusion) I grabbed a hand mirror, looked and realized...you can't tell at all. Just looking at my behind you would have no idea that it is all just for show! LOL.
2) It was recommended that I leave my employment, and that was the push I needed to open my own mechanic shop. Yup, signed the lease Dec.18, opened the doors Feb.1 and have never looked back! (we had to have a commercial door installed at the shop....where the heck where you?? LOL.)
3) I eat everything and anything....except pineapple, I can't stand the look of the out come with pineapple (sorry summer, chewing and spitting is just a waste for me..lol). I have gained 20lbs since the surgery and it's because im able to get the nutrients out of foods now. Such a novel concept!
4) Oscar hasn't leaked completely. A few times it has gone under the skin barrier and when I do a naked shower it is revealed that the barrier was barely hanging on, skin itchy's are an indication. I sometimes wear a Sure Seal and he has leaked enough to penetrate past the barrier and the Sure Seal has stopped it. I have a colostomy so the output is usually thicker and leaks don't usually happen.
5) I ride a motorcycle, am in and out of cars all day, play sports....he's fine. You can buy a product called "the ostomy guard" and strap it on for higher impact sports. I strap one on when I am doing roller derby.
6) It's fine to get wet, it won't leak. I hate when the pouch stays wet so I have a "bathing pouch" I wear when I shower/swim and then change out when I dry off. I use a 2 piece system. I also use the hair dryer set on low to dry the skin barrier, otherwise you end up with wet undies...yuck.
7) I can change out the entire system in as little as 4 minutes but I usually have a long naked shower (strip off appliance, get in shower naked!) then lie on the bed and just relax for 15 minutes or so before putting Oscar's clothes back on.
Hope some of this helps!!

RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
"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 Oct 2009
Total Posts : 1054
   Posted 5/25/2010 1:44 PM (GMT -6)   
I also had my rectum removed. I had my surgery just over two months ago and it's totally fine now. It was slightly uncomfortable for a few weeks after the surgery but definitely not unbearable pain at all.
You will probably be just fine in returning to work. You may have to check with your surgeon about how long you'll have to wait before doing heavy lifting after the surgery, but you will eventually be fine.
You will have slight restrictions on what you can eat, but nothing enormous, especially compared to what you can't eat now, I'm guessing. You'll be on a low-residue diet for the first 6 weeks or so probably, but eventually you'll only really have to look out for things like nuts and seeds and popcorn, and possibly the skins of some fruits and veggies.
I have had mine for over 2 months now and it has only leaked once, and that was due to me not changing it when I should have. Just wanted to get a few more hours' weartime, and that was my fault. I have gotten deodorant for my pouch but seriously I don't think it smells that bad. No worse than regular poop. And if you just flush right after you empty, I don't really see a problem.
You don't have to be THAT careful, but don't go banging on it or anything. You don't have to change it after bathing or swimming--it's made to be able to get wet. It's a good idea to dry it thoroughly, though, to increase wear time. You can use a towel or a hair dryer. It's really not a huge deal.
I have not had one day since my surgery that I wasn't EXTREMELY grateful to have my ostomy. You'll get used to it quickly if you think about the good things it's bringing you. Good luck on your surgery and keep us posted!
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/25/2010 5:46 PM (GMT -6)   
having my rectum removed was the hardest thing for me, not the most painful, it was just so hard for me to figure out how you take out a hole. It did hurt, but most of all it itched!

As for work, i think you could keep your job, but it will be a while before you can do that lifting again.

You can eat normally, after the first 6 weeks, like they said, watch out for seeds and nuts, and drink lots and lots and lots of water! Thats the biggest diet change, you need to increase your input by twice.

Does it smell bad? yep, poop stinks, lol. But it doesnt permeate the whole house or anything. It will smell worse at first. And FYI the stuff that comes out first in the hospital is gonna be neon green and smell horrible! But it wont stay that way after you start eating.

Can you hurt it? Well it doesnt have feeling, but if you bump it hard it will bleed, which is kind of freaky, but i dont think its a big deal, unless it just does it for along time.
At first your stomach will be sore so seatbelts and pants and stuff will hurt, but its not the stoma its the incision and the swelling, that will go away.

You can take a normal shower/bath whatever. Hottubs are fine, we have one in the backyard and pools are fine, have one of those next door! So i spend lots of time in them, even waterparks are fine.
They make these awesome things called sureseals that you put on and make it much easier to dry.

Most of the time leaks are user error! At first i had them a bit, because i didnt know what i was doing. After figuring out a system, im pretty good. Occasionally i will have a bad pouch, or something just happens. But its not all the time, like maybe 4 times in 3 years (not counting the ones right at first, lol)

So basically, its gonna be hard and its gonna hurt and first, but its SOOOOOOOOOOOOO worth it!!!! Three years later there is still something almost everyday that makes me grateful i did it!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 5/25/2010 6:14 PM (GMT -6)   
Well, Brian84, I not going to repeat everything already said!!! It's all the truth...it's not an easy surgery, BUT it is SO worth it!!!

Use a heating pad on your back (never on an incision) to help with the soreness...it does wonders:)

I've had an ileo for 10+ years and can count my leaks on one hand:)

I don't restrict my diet...there are things I don't eat but that's because I don't like them...I do eat popcorn, nuts and seeds in moderation! I just bought a pinapple...sorry Allie!...and I'm looking forward to a few bites:)

You might not be able to lift for a little while (those are heavy items) but it shouldn't be a long term problem! As far as sports...protect if you think it's wise...but I spent the weekend running, horseback riding, took a 10 mile bike ride and kayaked...life is GOOD!!!

This decision is a hard one to wrap your head around, but like it's been said, SOOOOOOOOOOO Worth IT!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 5/25/2010 8:51 PM (GMT -6)   
Welcome Brian,

I also had Crohn's in the colon and rectum and tried every medicine before having a proctocolectomy (colon and rectum removal) with permanent ileostomy 4 years ago. I thought the rectum removal part was going to hurt, too, but it really didn't. I was so surprised that I went home 4 days after surgery and was out driving and grocery shopping two weeks later!

Don't worry about hurting or bumping the stoma. It's a tough little bugger! You'll be fine going back to work after you're all healed up. I have a 100 pound German Shepherd who loves to go to the beach with us and ride in the back seat of our F-150, but doesn't jump, so I hoist him into the truck without any problem.

You'll be able to eat normally and will probably have more variety in your diet than you do now, because you won't be sick or in pain anymore. You will honestly feel so much better once you get rid of that diseased colon and rectum! Surgery is the closest thing to a cure. Since we never had Crohn's in the small intestine, my Gastroenterologist told me that it will most likely never show up there.

It's also wonderful to be medicine-free, especially prednisone-free! There are so many weird side effects from all of the meds that you won't have to deal with anymore. You'll have so much more energy, too. I'm so glad that I had the surgery and got my health back.

In the last 4 years, I have never had a leak! I had a really good ostomy nurse who hooked me up with Coloplast Assura Extended Wear Wafers, which last for a week and are sweatproof and waterproof. They have been wonderful with my active lifestyle (working full time and exercising and showering every day). It takes me all of 3 minutes to cut a hole in the wafer, put some stomadhesive paste around the hole, and stick it on.

I recommend shaving the hair on your stomach where the stoma is going to be and using Adhesive Remover Wipes to remove the wafer before showering. I also recommend Hollister M9 deodorizer drops. Put a few drops in the pouch, and there is no smell at all. These are all items that you can purchase through companies like Edgepark or Sterling Medical. If you call your insurance company, they'll tell you which company to purchase your supplies through to get the best coverage by insurance.

It's true that the initial output will be green liquid, but that's just bile, since you won't be able to eat much before or after surgery. But, once you're home and eating normally, the output will be normal. Also, they'll give you excellent pain meds by IV in the hospital and pills to take at home, so you'll be feelin' just fine! smilewinkgrin

Make sure you walk a lot after surgery. That will help wake your intestines up, so your stoma will start working. Also, bring Gas-X with you, just in case you get gas pain before your stoma starts working. Good luck on the 11th and please ask us any other questions you may have. We're all here to help!

:-) Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 5/26/2010 12:25 AM (GMT -6)   
lol @ Ohio76.....you are soooo brave!!!!! I just can't deal. LOL

RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Regular Member

Date Joined Mar 2005
Total Posts : 457
   Posted 5/26/2010 1:45 AM (GMT -6)   
Thanks so much for all the advice and info. Keep it coming if you think of anything else.
Another thing I thought of is you know how you go to sneeze and your whole body tightens up (including your butt), how does that feel once its removed and there is no muscle there. Does it hurt the first few times?

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 5/26/2010 4:36 AM (GMT -6)   
No pain at all when sneezing Brian :-).

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/26/2010 9:00 AM (GMT -6)   
well at first it might hurt a bit to sneeze, lol. In your stomach. Just hold a pillow there.
As for in your butt, no i dont think so. But you might feel like you have to go to the bathroom sometimes. Its annoying but not painful. I notice it more if i have to pee really bad!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

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