Deciding on Colectomy: A Personal Journey and Advice

Vic - I know how you feel, only I'll be 64 next week. I've never had any problems or ever been ill. Twice I had ulcerated colitis, but meds healed it within a month both times. Never had to stop eating or going anywhere, just took the meds and I was fine. My husband and I have a condo at the beach, and last year in March we were walking along the beach and I told him I had never felt better in my life - please don't ever say that, it was the kiss of death. Came home and the ulcerated colitis flared up again - immediately went to my physician, took the meds, nothing worked. Had me on everything - 60 mg of prednisone, a cancer drug 6MP, Asacol - you name it, I was on it. Nothing worked, hospitalized locally for two weeks, came home and got sicker by the day. On a good day, I was going to the bathroom 12 to 17 times a day. On a bad day, 30. Finally, on July 1st, I fell down in my hallway and couldn't get up. My husband called 911 and they took me to Pittsburgh, four days on a ventilator, 9 days in ICU, no one could make up their mind whether my colon should be removed or not. Then they decided I should have it removed, but by the time they got me to the operating room, I was too weak for the operation. After two more weeks in a step-down room, I was taken to a rehab facility. I couldn't walk, pull myself up in bed, or anything. Then a fistula appeared near my rectum. By this time, there was no dignity left. Living in a diaper and not being able to move was almost more than I could bear. Finally, after seven more weeks, they decided I needed the colon removed immediately, so back to Pittsburgh I went, had the surgery, and they removed all my colon and part of my intestines. I now have an ileostomy for the rest of my life. When I tell you I know what you're going through - I know. I was so sick of the drugs - also had a blood clot, so they put me on Coumadin. Long, long story short. I didn't get home again until Sept. 19, 2009. I finally got well, went back to the beach, just got my strength back... finally got used to the pouch and looked down - had an umbilical hernia. So here we go again. Just had surgery again on May 26th. Will forever have the pouch, but if your wife is anything like my husband, please, please have the surgery. My husband was with me every day from beginning to end. He could care less about the bag, and once you have your clothes on, no one ever knows you have it. There is another site called C3 Life that people just like you and me write to, and any question you have or any help you need is always there for you. Once you get off all the drugs, you will feel like a new person. You'll be able to do everything you ever did before, you just have to take extra precautions sometimes. Some of the stories on C3 will make you laugh and cry. There are so many people that are worse off than you and I. You're so young - don't let this keep you down, you have a wonderful family to live for. Enjoy life.
Nanc

Hi VicBear - I was 45 when I was diagnosed with stage 3B colorectal cancer.  Went through multiple surgeries, chemo, radiation.  The radiation destroyed my rectum, but I insisted on going through 5 miserable years using that part of my colon until I developed megacolon and nearly messed up my small bowel too.  Finally 18 months ago I consented to a permanent colostomy.  The decision wasn't difficult by then - I nearly begged for it!  Like you I wanted to try every other option first - in my case alternative things like probiotics, biofeedback, even a J-pouch or artificial rectum construction.

I think the most inspirational story ever is Rolf Bernirschke's (San Diego Chargers, 1970s).  I don't know if it gets told much anymore, but I remember at the time how amazing his courage and ability turned out to be.

I know you will make the right decision for you.  Your wife sounds awesome and a source of true wisdom.  Put your faith in her love.  

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sometimes i forget i have a stoma but...

The fact your wife accepts your ostomy is crucial (so many here can tell you that our significant others can not). But what is key is how you will feel about yourself? Can you look into a mirror now, when you're naked, and not flinch? Can you change your appliance without having a crying jag? If so, the toughest part of your journey is over and you have pretty much made a choice.



I know I am very, very happy I do not have to take Prednisone anymore because it made me an ugly, nearly-violent person besides ravaging my skin.



Good luck, friend.



Froh

Hi, reading this it sounds dreadful! How you can cope with all that is amazing!

Is there any chance your doctors can give you a colectomy without removing your rectum? That way you have an ileostomy until your strength is back, and then you can get an internal pouch. The ileostomy is temporary for as long as you need, this is what I've done and I'm hoping to get the reversal after just a year.

There are less than 1% of pouch construction surgeries that do not work, and once you have the pouch, pouchitis can attack, but this can be treated with strong antibiotics, and I feel that I'm willing to take the risk of surgery because, like you, my better half is fine with the fact that I have a bag.



I hope this helps you to make your decision

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How to Manage Emotions with LeeAnne Hayden | Hollister

If the doctors say that your colon is that bad, it is probably for the best to get it removed. Then you wouldn't have to deal with all of the pain and medication that comes with Crohn's. I am only 22, and I just had permanent ileostomy surgery due to severe Crohn's colitis. I elected to do it because medications were not working and I was feeling miserable every single day. My colon was sapping all of the health and energy out of me. I definitely feel much better now that I have my ileostomy. I was a little apprehensive at first as well due to the fact that it would be permanent and there would be no putting it back once it was out, but it is definitely better than living in pain.