Need advice - Worried about ileostomy reversal, job security, and potential complications

I have a date for my ileostomy reversal, for September, but I honestly cannot decide whether I want to go through with it. I don't particularly want to spend the rest of my life with the bag, but at the same time I don't want to have the reversal done and spend most of my days inside the loo or needing the loo and being too frightened of going out in case I have an accident. I'm starting to get anxiety attacks with the worry of it all. Most of all, I'm worried about losing my job if I cannot get to work or going on to no pay as I could use up all my sick time.

I was diagnosed with rectal cancer in April of this year and had immediate surgery (low anterior resection). The cancer was low down (5 cm from anal verge). I was stage 1, so I was told they got it all out in the op, so I haven't had to have chemo or radiotherapy.

When I told my surgeon that I was really worried, he said he didn't think I would have a problem. I told him about all the bad stories I have been reading online and he told me I would always read the bad stories as those who have positive outcomes rarely post... but, the way I see it, is you cannot just dismiss those who are having problems because it obviously happens. I really don't know what to do. Has anyone had the reversal done and regretted it?

Any advice would be much appreciated.

I had an appointment with my doctor to schedule my reversal in July. Then he said that the way he saw the images, there was a chance that he would have to do another ostomy. My operation was due to diverticulitis. I spent six months of awful recovery, since he left the wound open and it took six months to finally close. So, when I saw him again in August, I told him that without warranties of at least 85% of not having another ostomy, I might as well just keep this one. If you feel anxious, talk to your doctor, maybe you need more time to think about it. There is always the possibility of doing it later. Listen to your gut, and your feelings. They are more important than a scheduled surgery. Hope it helps. And in my case, I will see my doctor in six months, and then we'll talk again, and see if I can go through the reversal.

Hello Shadow912. Sorry if my answer is short, but I have lost the longer version twice and I am running out of patience with this technology. The basic message was that these decisions are always hard ones to make as, invariably, you will not know what is the right or wrong answer until after you have made your decisions. Your doctor is probably right about online correspondence, in that people who are 'cured', tend to no longer feel the need to correspond,  so we are left with a skewed perspective from people who have had things go wrong. Another alternative is to scrutinise the academic medical papers for studies of outcomes. However, this often gives you more information which can be less than relevant to your own situation, so you are still left with the same dilemmas.

I decided to stay with my stoma because I figured that the original problem was not resolved and  by having a reversal, the chances were that it would return to how it was before.

The simple answer to your question is that there is 'no simple answer'. I just hope that you make the right decision for yourself but I suspect that you will not know this until some time afterwards when it might be too late to change your mind.

Best wishes

Bill 

Hi everyone,

I'm new, what a brilliant site! I've had my ileostomy for almost 3 years now and I'm in the same place. Very wise Bill, I agree with everything you say. All information is biased in some way and it can be hard to decipher true figures of outcomes. Too often, I have done my own research and concluded. There just isn't enough information out there from ostomates' experiences. It needs work.

Anywho, to do or not to do... that is the question.

I'm bleeding so much right now from my stump and having urgency. Tbh, it's horrible. I'm going to have to do something soon. I am a potential candidate for reversal, but I'm really active, up hills, skating, climbing the works. I've heard so many horror stories, I'm tempted to just have the stump removed. Thing is, permanence.

What's everyone's experiences/ thoughts?

How to Manage Emotions with LeeAnne Hayden | Hollister

If you are bleeding excessively, you should go to the emergency care facility!

Shadow,

I have an ileostomy since 2014. My entire large intestine (colon) (5 feet) was removed. That makes reversal more difficult because the large intestine is what absorbs the liquid in our diets, allowing for a more firm stool, as opposed to diarrhea/loose stool. The reason for each ileostomy is different for everyone and those that are having ongoing issues, like continued rectal bleeding, are dealing with a problem that most likely is not yet fully resolved, such as diversion colitis. From what you said, you suffered from rectal cancer, and you had very little (if any) of the small intestine (which is about 22 feet long) removed, and your large intestine is intact. If there was no sphincter damage (usually from chemo/radiation) and no surgical problems, your chances of a successful reversal should be very good. Talk to your surgeon about the sphincter muscle. There is a test, an Anal Rectal Manometry, that can help to determine the strength of your sphincter muscle and your ability to control your bowels after the reversal surgery. TAKE YOUR TIME making this very big decision. There is no reason to do this surgery immediately, and the chances for success are not related to whether the surgery is done sooner or later. Good luck with your decision.

Peace