Seeking Advice on Colitis Surgery and Recovery

Hello all. I am a 60-year-old male who has had a mild form of colitis for about 20 years now. For 2 years, I have been on Remicade which has helped but not totally brought me into remission. I work in an office environment and have lived a full active life with travel and activities, mainly running, tennis, and I love riding my motorcycle up north on country roads. Except for this condition, I am relatively healthy and fit. During a recent colonoscopy and subsequent biopsy of samples taken, my doctor told me that there was a change in the cells in the affected area that could lead to cancer. There is no cancer yet, but he is recommending that I have my colon removed to eliminate any risk. I went for a second opinion, and the doctor basically said the same thing and went over the results of the colonoscopy in detail. I am going for a third opinion on October 6 at a clinic that is world-renowned for colorectal surgery and treatment. I want to defer this surgery for as long as possible over fears that it will force me into retirement due to the lifestyle changes that I will need to make. There is no backup to what I do, and being off work for extended periods is just not an option. I can do certain work from home, but there are limits to that. The doctor tells me it will be only a 3-week absence before I can go back, but I tend not to believe this. Who knows what sort of complications can arise. I would really like to hear about the experiences of others on how they dealt with their surgery and the aftermath. Thanks.

Hello MHY.

Welcome to MAO and thank you for your post, which gives me an opportunity to rethink my own experience in this regard.

After a colonoscopy and biopsy of the polyps they removed, they told me the same thing about the possibility of cancer developing. I was not too bothered about this news except for the fact that my father died of bowel cancer. the thing that tipped it for me was living with the problems I was having with incontinence and emmense pain, which I was informed, would all be rectified by having a stoma. I have not regretted the decision to go for the operation despite the fact that I would need to convalesce for a while afterwards. With regard to activities involving physical exertion, I had to decide that this was part of the cost/benefit analysis involved in making the decision. Convalescence tends to be an incrementally progressive process, whereby we cannot do very much at all until the physical wounds are healing sufficiently to allow more and more exercise, until we are back to where we were before. 

I was a little impatient in wanting to irrigate but I agreed to wait the advised period of six weeks, which was what they said was necessary for the scar tissue to be strong enough to withstand this process. What they did not tell me was that this operation creates a very good chance of developing a hernia so we have to bear this in mind during our convalescent period and beyond. I went back to work after three weeks and there were no complications arising from that. However, my job did not involve any physical strain so this would have been an important consideration. I exercised very carefully and systematically to begin with so that I complied with what was recommended for safe and steady advancement towards 'normality'. After about nine months I felt confident to be able to do almost everything I had done before but I admit that I was not a tennis player. Tennis sounds like the sort of sport that would need a longer period of abstinence than other sports such as running. Although, even with that, I gave it an incremental introduction. starting with walking short distances, then jogging short distances and gradually increasing distances and speeds. Unfortunately, during the process of reintroduction to running I realised that I was getting too old for such strenuous activities and this was nothing to do with the stoma! I now walk and cycle as an alternative to running because I find them easier  and more enjoyable. Rugby was something I also gave up as the possiblity/probability of injury was deemed to be too great.

I still work and I'm 74years old this week so I don't think a stoma should cause you anxiety on that front.

There is an inevitable adjustment process and period after this sort of operation but if you stay positive and prepare psychologically, emotionally and physically for the new you , this adjustment can be relatively swift and painless. There is really no need to worry too much  about complications because they can happen in life, with or wthout a stoma.

I hope this is helpful to you in your deliberations.

Best wishes

Bill    

Very wise to seek a third opinion MHY.

Some questions you might like to ask:

What does the operation actually involve?

How much bowel will be removed?

Will I end up with an ileostomy or colostomy?.....big difference.

Will I be rendered impotent?

Watch your doctor's eyes very closely....do not allow your questions to be fobbed off.

Good luck.

V.J.

Thank you for the reply. I am glad to hear that you are getting on well after your surgery. May I ask when you had the surgery and what sort of work environment you are in? I work in an office environment, the heaviest thing I lift is a pen and copier paper. I will ask the doctor on Oct 6 about the hernia part of it. How did you deal with the odor and leaks that I have been reading about? Is this going to always be an issue? Did you adapt to the appliance quickly? There are meetings and education seminars that I attend and I would tend to be very sensitive to those sorts of things. Also, the doctor I did see told me it is best to remove the entire colon and he can create an internal pouch and reconnect to the rectum so there would be no external pouch. He said this surgery would happen about 2 weeks after the colon removal surgery. I need to decide if I should have this second surgery or just live with the stoma. Any feedback would be appreciated.

Hello MHY. I had my surgery many years ago ( I can't remember precisely!) but I was working in an office, in hospitals and in the community. I conducted educational seminars at least twice per week and at no time did I let the stoma bother me, even when I had to excuse myself from the room to cater to its needs. I would say that as I was incontinent for years before my operation, I was quite used to having to clean up when accidents happened. If anyone dared comment negatively, which was rare, I would simply say that they should think themselves lucky that they didn't have the problem. The problem of leaks during the day completely resolved itself once I began irrigating but it sounds as if you might not have that option. However, with a pouch and a functioning sphincter, there should be no reason why you would leak - unless you were leaking before. I don't have many issues with having a stoma but I think I would want to look seriously at the concept of having a pouch if that option was on offer. (which it was not for me)   

I am not familiar with the surgery that is being suggested for you  so I hope someone else will chip in and tell you about their experiences regarding this. 

Best wishes

Bill

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thanks, Bill, for your replies. The information has been helpful.