Seeking Advice on Reversal Surgery for Colostomy

I am a 59-year-old female who has gone to hell and back with Crohn's disease. Spending most of 2015 and 2016 in the hospital, 4 colon resections later, I have a colostomy that I have had for 3 years. My colorectal surgeons refuse to reverse me, saying I would go right back to being as sick as I was. I also work as an R.N. in a doctor's office and he is opposed as well. My family is against it too. I have found a surgeon who is willing to do it. Surgery is scheduled for January 16th. She said if I did get sick like I was before, she would reverse me back and it would be permanent. I don't want to be selfish, and I have taken their feelings into consideration, but they are not living on the other end of this bag!

Any thoughts?

Wow, Jemmy... You're right that the decision is yours...not anyone else's. You're not being selfish, and your family is just worried about you because they love you. I can sure understand that you'd be willing to do just about anything to be normal again. So would I. But...I think you have to consider the odds. From what you wrote, the odds aren't too much in your favor and the most you would likely be accomplishing is a temporary delay in the inevitable, with an extra surgery..or two that you will have to go through thrown in. What did the surgeon who agreed to do the reversal say about the odds of your getting sick again the way you were? That is what I would most want to know...my exact odds. I'm not much of a gambler, but sometimes it does pay off, I guess. I know this doesn't help much, but try to get some clear odds on its permanent success. Then decide how much of a gambler you are and whether it's worth it or not. Good luck on whatever your decision turns out to be. I DO understand your dilemma. Linda

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I know this is a very difficult decision for you to make. However, based upon the information you have provided, I think it is best to follow the advice provided to you by your surgeons. I have had an ileostomy for close to forty years. Similar to you, I am a clinical professional. I have been able to successfully work and have a happy, fulfilling life. I think you will be taking some awful chances if you don't follow the advice of your physicians. Please feel welcome to communicate with me at any time. I wish you the very best.

Hi Jemmy, I just ran across your post, and I was in the same boat to have a reversal or not. I have had my colostomy for a little over 2 years. Ruptured bowel from Diverticulitis has been a tough road to hoe. I am retired from the medical field so I could sit back and let things heal. Then came the question and I decided to live with mine. I was in the hospital a little over 40 days and then rehab for 8 weeks. I don't ever want to go through that again. At my age, it doesn't matter as much if I would be younger. Because of the type of surgery I had, I would have to go through the same type again to reverse. No thank you. The pain and recovery was the worst thing I have ever been through. So no reversal for me. But as the others have stated, please listen to your doctors and think long and hard about a reversal and what your body will go through. In the long run, it is you that has the choice. Best of luck in your decision.

Hello Jemmy.  I agree with others inasmuch as it is your decision. I will briefly explain that I was also in a somewhat similar position and still am in that I have been offered a reversal. My logic was that the condition which gave rise to having the colostomy had not gone away and would therefore return if I had the reversal. For me that was a no-brainer  and I settled down to accepting life with a permanent stoma.

Best wishes

Bill 

It really depends upon your situation. Some people don't have the option for reversal, really. I know in my case, if I reversed my intestinal condition, it would still be there, so I would go back to having the same issues I had pre-ileostomy. I got mine when I was 18, a year ago. I was told by my surgeon technically I could reverse it or do a J pouch, but because of my conditions, I would still have the same issues before I even got my ileostomy. So when I chose to do the surgery, I accepted I would have an ostomy for the rest of my life, even though I am only 18. My surgeon wasn't all too excited about giving such a young person such a life-altering surgery, but my colon was in such bad shape, doing nothing would have certainly ended in death. What type of issues are you struggling with having a bag?

Hello Jemmy.

As I was re-reading you post it occurred to me that, there is another important aspect to having more surgeries, which you might like to consider and this is the problem of excessive scar tissue, which can sometimes lead to adhesions. I would urge you to read Mayoman's recent blog on 'The perils of scar tissue'.

Best wishes

Bill 

Hi Jemmy.  Maybe I'm just not smart enough to understand your situation.  Is your ostomy not working?  Is it causing you more discomfort than you experienced before it became that red bump on your belly.  After I was reconnected and spent my life on bathrooms I decided there must be a better way.  Too much of my distress pre-colostomy was lodged in my head screaming to me that a poop bag on my belly was the worst thing a person could experience.  It wasn't, it isn't, it saved my life and my head finally stopped screaming garbage and admitted "it's just something to "accept, get used to and be thankful for."

Respectfully,

Mike

I think one's attitude towards a pouch can depend on expectations. I have an ileostomy (10 years) and from the start only considered it permanent. That has led me to embrace it and figure out ways to make it work. The initial adjustment took awhile, but now I barely think about it and it really does not impact my life. It's barely an inconvenience at all.

On the other hand, having the prospect of getting rid of it presumably would change one's mindset to emphasizing the negatives and to dream of being back to "normal". Unfortunately for you, if being back to normal is back to being sick again like in 2015 and 2016, that doesn't sound so good.

It might not be possible, but if I were you, I would postpone the surgery and give myself some time frame, like 6 months or a year, to embrace the pouch and see if you can get to a better place. If you read blogs like this, almost inevitably newbies struggle (and if you really haven't liked it at all, you could still be kind of a newbie), while those of us who have longer-term experience tend to come to the conclusion that it is really not that big of a deal.

You might hate it so much that you can't do that. However, if you can at least get to a mindset that it is your friend in terms of avoiding more surgery, maybe you could try to embrace it. I'm pretty sure that at some point you would start feeling it is not a big deal. If you reach your timeframe (6 months or a year) and feel you are not moving towards being able to accept it, you could have the surgery then.

In the wake of all the negative reactions from experienced medical personnel, with valid reasons for not wanting you to undergo the reversal, my real question is not for you, but for the doctor who did agree to do the reversal. Does he really expect a reversal to clear up the Crohn's disease? You have already said that the Crohn's itself had put you in the hospital for the better part of 2 years! What part of the reversal does the surgeon think will get rid of the Crohn's? If he doesn't think that, if he in fact expects it to be so bad that you will ask him to put the ostomy back in, why would any reputable surgeon agree to do it in the first place? You are seriously looking at 2 more major surgeries to end up exactly where you are right now - but with 2-3 months recovery time from each and more scarring. And possibly more trauma to the original stoma area so that a new stoma will not be sited as well as the existing one.

You have to sit down and ask yourself, what part of living with a stoma is worse than the agony you have described as living with the Crohn's Disease? Because from everything I have heard and read on this site, the Crohn's does not magically go away when you have a reversal. So, please, meet with your surgeon and thoroughly discuss this issue before you have another surgery that may put you in worse condition than you are now.

Hi Bill, could you provide a link to Mayoman's 'The Perils of Scar Tissue' blog? I have tried searching to no avail. I am scheduled for my 4th surgery in 5 years and struggle with my pain issues. Thanks!

Hi, I decided not to put myself back together because a) the pain of the operation and b) the results would most likely be the same as they were before. Yes, I'm not thrilled with a bag of shit attached to my side either. But, for me, it is the logical choice. If your physician can assure you that you will be continent, it will be worth the effort.

Hi Jemmy, it sounds like you have been through a rough time with Crohn's. I had ulcerative colitis, as a child, and was in and out of hospitals for 4 years before the doctors had to do an emergency ileostomy. They wanted to save the rectum, in case they or I ever wanted to go ahead with a reversal. I knew at 15, after surgery...and again at 19, that I never wanted to face having UC again. I went ahead with the total colectomy (to remove the rectum) making my ostomy permanent. I never regretted the decision. The ostomy allowed me to return to real life, go back to school, get married, have children, and later travel the world... My ostomy is my badge of survival. The issue with Crohn's is that it can occur from anus to gullet (my ex-husband had it....and although he had an ileostomy (removal of the large intestine) he often had flare-ups of small intestine inflammation. My older son also has Crohn's, and although he hasn't had surgery, he's on medication.....and has the occasional flare-up (he's 46 and lives with the possibility of needing an ostomy at some point or developing colon cancer). He's been relatively lucky that medications have controlled his condition, but that doesn't work for everyone. Think long and hard before putting yourself back in the same situation you had before. Crohn's is a nasty disease, and the medical treatments to control it can be as destructive to the body as the disease itself. You may not like the ostomy, but it's a solution to manage both the disease and elimination of waste. A friend calls it his "belly butt". I have done everything I've ever wanted to do with this "bag of shit" attached to my belly....and am actually grateful for the life I've been given back. Chat with more people, ask questions, and move forward.....not back. Best of luck to you. Marsha

Hi Jemmy. I failed to mention before that I was so disappointed with the medical advice you got from the surgeon. I’m not trained in anything close to surgery but I have become pretty well trained to listen to experienced folks who offer their learning to help us, not to show off, not to discredit others but to compassionately extend assistance to improve our quality of life. We’re blessed to have these folks and we need to read their stuff and trust that with their input and our intellect our QOL will be so much better.
Speaking only for myself, that extra appendage on my belly is far from the worst thing that could’ve happened. It saved my life and allowed me to find the folks here at MAO who really care.
Respectfully,
Mike

I agree with the words of wisdom before me, but I would like to know, do you have to have it done now.... Can you have more time to think about it or do you have your mind already made up? If you do get it done, did you say if it didn't work out you could go back to the colostomy? Are you ready and will you have the support you might need to get through all of it?

Think past the issues a colostomy can bring and think ahead to what you may have to go through. Is it worth it?

Best wishes in your decision.

Hi Jemmy. I wouldn't want to make a mistake, and I know Chris is a terrible issue to deal with. I have a niece with Chons, but it is fully in remission now. This thanks to a drug she got called Humira from her gastroenterologist. It requires insurance to obtain it, and if you do, then the cost could be as low as $5 with a copay card. There are other similar medications that are just as effective. If you don't have insurance, then there are other ways to get it at a low cost. It targets UC and Crohn's. I had UC, so getting an ileostomy was an easy decision. They did not have these medications when I had my first surgery. I have psoriasis, and I use Stelara. This is another medication that is similar to and is good for several conditions such as arthritis. All I would ask is that you see a gastroenterologist.