Need advice: Colectomy or not? Seeking input from those who have been through it.

Hi everyone. I am struggling with a major decision and need some advice. I have had Crohn's Colitis for only seven years, yet in that time I have had a resection and a "temporary" ileostomy bypass. I have had the bypass for 2 1/2 years in hopes of my colon getting better. It has not, in fact, it has become worse. So bad that the last two scopes resulted in a perforated colon each time. My docs don't want to do another exam for this reason. I am on Humira and Prednisone, which only keep the disease at bay. I have been on Prednisone almost the entire time, and it has given me cataracts and osteopenia. I have already had eye surgery because of the meds and take Fosamax for the osteopenia.
My problem is all the doctors (my local GI doc, my PC doc, and the GI dept at the Mayo Clinic) all advise me to have the colectomy because there is no chance of healing. Besides the meds, I am managing. I guess I still have hope of getting better. It's just that the surgery is permanent. I am 47 and feel I am not ready. I went into the "temp" bypass thinking it was going to be temporary and feel I wasn't prepared for this to be permanent. So the docs say it is up to me WHEN to have the surgery. I know it is the right thing to do, but I just can't make that decision. I was also told that once I do this, my quality of life will change dramatically for the best and NO MORE MEDS. My wife thinks I should have the surgery. My pouch has no affect on her. She has been nothing but positive. But this is permanent.
I would like to hear from those of you who have had similar decisions and can tell me if it was the right thing for you to do.

Thank you. Vic

Dear Vic,

While I do not have your exact same set of circumstances, I think I can relate to your struggle with making a decision. I suffered for 8 years with bowel problems. Included in this time were 2 bowel resections, a surgical rebuilding of my bowel to increase capacity, more colonoscopies than I care to remember (Prep Queen was my husband's name for me), plus one hospitalization for ilioanal shutdown secondary to pneumonia. I had a temporary ileostomy during this and a reversal. I was treated with prednisone, which has resulted in my "severe" osteoporosis, as well as Hyperbaric Oxygen treatment, which permanently reversed my vision. It was suggested to me that I have a colectomy to avoid future cancer with a pull-down procedure. The second and third opinions I received said it was a joke to think the pull-down would work for me.

Eventually, after 3 surgeons, 4 gastroenterologists, and all of the above, I came to the end of the road. I never wanted a permanent colostomy. I was promised I would never need one. But my quality of life was nil. I made the decision to have the surgery. It was not easy. However, I can tell you that it was the best decision I have ever made. My life is so substantially improved that there are not words to express it. No more pills, shots, drugs, endless hopes that THIS doctor will be the one to figure out a way to help my damaged, shot rectum. To be honest, I am sure there is no one who loves the bag. But I am in control of it as opposed to a life spent out of control.

Wish you well with your choice.

Lynn

Guess if you like living with all that junk going on, I think it would be harder than having the surgery. I had no choice when I got mine, and since you have a loving wife, you are a big step ahead of a lot of people. So get the surgery, get the doctors out of your life, quit being a guinea pig.

I cannot guarantee it, but I will tell you that it was the best decision I ever made... period... My quality of life is amazing and no more meds, and best of all, I haven't been to a GI doc in 4 years... Yahoo... Just look at some of my photos, and I think you will agree. I have my life back, and I am now better than I can ever remember... Hence my name BEYONDPAR... I am permanent and have no rectum, anus, and no colon at all, and I couldn't be any happier... A tough decision, yes, but one I think in years' time you will say to yourself, "Why did I wait so long?"... I'm here for more words if you need to hear more. Michael

As far as I can tell, reversals are only "successful" for those who didn't have prior bowel disease (Crohn's, ulcerative colitis or cancer) and if you fall into the latter categories, you will no doubt end up with a permanent ileostomy anyway. How "successful" it can be to still have multiple bowel movements a day is beyond me, I'm just thankful to have my pouch on side!

I also had Crohn's and took Prednisolone for several years, with similar conditions to your own occurring.
I have been off all meds since my permanent ileo. surgery almost 2 years ago and have no pain whatsoever and any side effects I had from the Pred. have been reversed.

My quality of life now is beyond compare, having this surgery is definitely the best thing I have ever done and I should have had it years ago and saved years of illness. Hindsight is a fine thing!

I am living my life now instead of simply observing it!

Good luck in your decision Vic, I am sure you will make the right one.

Jo

Vic:

After fighting Crohn's for 37 years, I had a proctocolectomy (complete removal of lower colon/rectum) in Dec '09. I was scared. Against doctors' advice, I never did the temporary colostomy or ileostomy and thought I could just handle it with meds, diet, and lifestyle. I, too, felt I was too young and not ready to make the change (I was 53 at the time). I made an agreement with the doc that I would give him 5 days in the hospital, and I was going home. That is what we did. I had a huge learning curve with the "new me," but that is something you have already dealt with.

I did have quite a bit of depression after the surgery. That seems common, as testified by many on this site. However, physically, it was the best thing I could have ever done. I am no longer on meds and rarely have pain. My hardest problem is that I have little stamina and have yet to discover which appliance(s) are best with certain lifestyle and conditions. My diet is not limited (unless it is for convenience with gas-producing foods).

My advice is to find someone to talk to that will listen to your innermost feelings about everything. This forum has been good for me. Talking to my wife has been good. Dark days usually happen when I'm alone and start to wallow around in thoughts of the permanency of the surgery. Who cares though? I am physically better than I have been since I was a teenager! I can eat. I can not worry about uncontrollable diarrhea. I don't have to scope out the location of the bathroom everywhere I go.

Maybe there is a little glimmer of hope in these ramblings.....

Don't wait till your bowel is perforated, till you have pancolitis or megacolon ... all these are potential realities for someone in your shoes (I know). Your docs probably mentioned these and maybe cancer too.

Sounds like you are still at the point where you can decide to do it. I waited and then was in the hospital with really no decision -- emergency surgery.

You say you're 47 'and not ready'. My ileostomy was last Dec., I was 55 and 'not ready'. Let me tell you ... when they say "wanna live, then get the surgery" you get ready fast!

I was also one of those people who said I was 'managing'. The meds, wearing pads, leakage, pain. But managing isn't really living. No doubt - my quality of life is so much better now.

You probably know in your heart that things won't be getting better for you without the surgery. Listen to your heart, your gut, and your wife.

All the best - it's a hard decision but often it's a decision that can save your life and improve your quality of life.