I'd love some advice from those who have had (or considered) reveral surgery. I was given an unexpected gift of a stoma last November, following bowel surgery. I am mercifully cancer free as a result and am grateful. I have developed a parastomal hernia that is uncomfortable/sometimes painful.
I have been advised that a reversal opereration is feasible, that my muscle/ pelvic floor control appears good and that, as relatively young (early 60s), my surgeon recommends I should go for it. However, I only have some 25% of rectum remaining.
So, what do I do? Its not clear cut and am afraid of becoming faecal incontinent with such a reduced rectum. Am told that body adjusts and the end of the colon would learn to develop as a 'holding area'. But this feels a risk and I like to be active and away from the house/ town as much as possible. It would be hell to be tied to be near a loo all the time. On the other hand, to face having stoma and hernia for rest of my life is also not a great alternative. Has anyone else had such a dilemma. What did you do/ think? I would really appreciate as many responses as possible. Thank you very much in advance.
Hi there ,I had whats called an ultra low anterior resection and was told that my body would be able to cope with a reversal but it would be hard difficult at the start ,but get easier with time ,but would definitely never be the same as before, I decided to keep my illestomy ,I hope I have done the right thing ,that's just my own decision ,they say everyone is different, I wish you well in your decision, it's over 2 years now since my operation and still cancer free ,I can go places & do things, that I wouldn't have been able to do had I went for a reversal
Hi there , I am stage 4 bowel cancer and had my lower resection in 2021 I had a stoma for over a year and managed really well with it , after a lot of thought I decided to have the reversal in 2022 and it’s difficult to begin with and I did at times wonder why I put myself through more pain and discomfort , but after a few months I felt good again , some issues with clustering but meds help . Big decision but glad I did it . Good luck
have you made a decision? My stoma is 7 weeks old and I'm already asking the surgeon about a reversal. He said he will review it in February. I just can't accept it I'm afraid.
Hi Marie. I have made the decision that I am not ready to make a decision... I have so little rectum left that I am afraid I would suffer from LARS post reversal. No one told me about LARS but looks it up. If I had intact rectum I would go for it like a shot! Everyone is unique and I can't get precise info as to what will happen to my body after reversal. It comes down to - the upset and inconvenience of a stoma Vs the risk of reversal leaving one incontinent and the added risks of more major surgery. Which is the least terrible option and what is one's appetite for risk. I'd say that 7 weeks is still not long. It was off work for 3 months and still believe I am recovering from the surgery. Psychologically I think of the stoma as being no different from changing a baby. Maybe not as bad! But, one is always aware of it. And also it can impact socially and in relationships. I suggest give it another 7 weeks, see how you get on, and exercise (like gentle pilates, walking) to build strength and stamina. I'm not a patient person, but I have had to learn patience. It is an important skill, give yourself permission to have time to think, and also to switch off from all the thoughts and discussions about bowels!!! Let me know how you get on. Philip
I am sorry to hear that you are in a dilema about what to do with regard to your stoma. I like you had cancer of the rectum which has left me with a stoma after surgery, I have also developed a parastomal hernia. I had my surgery three years ago this month and as of yet I have taken no active steps towards seeking a referral. Prior to surgery I was experiencing bouts of faecal incontinenence which I dread having again if I have a reversal tthat doesn't go well, still not made a decision yet. I am up during the night a number of times to empty my bag the last time being around 08:00. Get very little output before 13:00 so I arranged to do anything I need to do away from home during the morning which works out well. I do take a small bag with me in case of an emergency the contents of which I have refined over time. I also carry the small resealable freezer bags (the type used for food, no odour) which I use for the used blue waste bags which I can then dispose of at home.
As for the hernia it can be uncomfortable and a little painful at times so if I am doing anything remotely active i will wear a support which I am sure your stoma nurses can advice on. One thing I have learned and that is not to have a large evening meal as this tends to upset the hernia which can lead to further loss of sleep.
It can be a difficult journey at times but confidence does grows as life improves. Take one step at a time and be king on yourself.
Hello Philip I am sorry to hear about your situation too. it's such a big decision to make. I haven't heard of LARS so looked it up and agree with you when you said nobody told you about it. there is a lot they don't tell you. why is that?
when I was in hospital I made the mistake of eating sweetcorn and boy did I suffer. I felt like my pouch had gone into a cornfield and harvested the whole lot. The nurse told me off the next day but as I pointed out to her, she never warned me. it was only then did she list the foods to avoid. never mentioned what to eat to help slow down output, ie: jelly baies/marshmallows. My friend who was a stoma nurse for over 20 years has been giving me all the hints and tips. I am so lucky to have her on board.
please keep us posted on your decision won't you so we can be here to help and support you.
Sorry to be late in joining in, I don't look in so often now. I had a Lower Anterior Resection six years ago (when I was 73) and a reversal five years ago. By then I also had a parastomal hernia which they sewed up when reversing.
I panicked a bit before having the reversal as I suddenly heard about LARS and wondered if the devil I knew would be better, but went ahead.
To begin with I spent a lot of time in the loo producing peanuts then gradually building up to something more normal. Like you I don't have much rectum but now, on a good day, it appears that the colon has adapted. The first few days if I went out I wore a pad and slept on a protective sheet. I never needed either and nor have I ever been incontinent though its been close! (I had more accidents with the stoma).
You won't get back to what it was like before. Things pass through the shortened colon faster and certain foods faster still. On a good day I might go to the loo twice, perhaps three times, if I have been out for a good lunch it might be more. It hasn't stopped me doing anything by way of travel or going out
While I had the ileostomy I controlled it with Loperamide regularly and I did the same after the reversal to begin with . I still might take one as insurance before a long journey.
Your colon and sphincter hasn't been used for a while so probiotics are useful to populate the gut again. Exercise to build up the sphincter muscle helps. If you go ahead, when you go to the loo try to hold on for as long as you can.
The minor inconveniences I have now are much better than life with the stoma. Like everyone else I was glad for it at the time as it helped save my life but I am happy that it has gone. However, I can see the point that people make to keep them and not have a reversal.
It is a difficult choice to make but this was my story. I hope that whatever you choose it works well for you.
