Search for answers with your ileostomy

1. Hello Elizabeth and thank you for agreeing to speak to us about your experiences. Please introduce yourself in a few sentences.

My name is Liz. I am 68 years old. I had an ileostomy just over 5 years ago and this is the story of my experience.

2. What condition caused you to need an ileostomy? How long did you suffer before the operation? Were there any other alternatives?

I was diagnosed with anal cancer which was a shock as I had no real symptoms. Later when I checked the list in a leaflet I actually had the last two of seven but did not realisz. My bowel was checked as part of the procedure and was found to contain too many polyps. I was told to have it removed as it was highly likely it would lead to cancer and in any event I would need to have an annual colonoscopy.  I therefore would need an ileostomy as there was no alternative.

3. How did you react when you were told that you needed this operation? 

When I was told, I was shocked and not really able to take it all in... it all happened really fast. The surgeon was lovely but his English was not great and he did not really explain what was going to be done. Not that I would probably have understood anyway! The nurse was very gung ho and just concentrated on how wonderful it would be.

4. How has the impact of the operation changed your life? Do you still feel some pain? How long was the recovery time?

My life has changed, no question. The bag takes precedence over everything. The ins and outs were not well explained and it is still trial and error years later. I find it hard to accept how unpredictable it is. Fortunately I don’t have any pain and I make sure I keep my skin in good condition.  

5. Was the operation and post-operation moments painful?

The operation and afterwards was extremely painful not the stoma but the anus area. It was awful. After the operation I was left with my bladder not working for 7 months and had to have 2 bags.  Within 2 weeks of the operation I was readmitted with an infection. I then was sent to a gynaecologist due to having a discharge (it was residue from the operation) and found out half my vagina was gone!

6. What were the reactions of your loved ones?

My family was scared and did not know how to react. No one (of the medical staff) offered to speak to them or my husband who felt very left out.

7. How does it impact your daily life? Do you find yourself being less social or nervous traveling long distances?

Everyday life is OK. You just have to get on and make the best of things. I am nervous about traveling, but I make sure I am well prepared. I am fortunate that I can eat everything although sometimes it can affect me unexpectedly.  

8. What was the follow-up care like?

The follow up care was dire. The stoma nurses were useless and did not do their job. I did have counselling but did not find the counsellor helpful. I have now been signed off from the hospital and basically casted away. Fortunately, I have changed providers and this one appears to be much more helpful and on the ball.  I actually was advised to complain about the original company which I would have done if I thought it would have done any good.

9. Have you had any difficult or embarrassing moments concerning the bag?

I have had too many to mention but fortunately not in public and I have managed to sort things out but at home there have been times where I did not know where to start mess on me, clothes, floor you get the picture. Straight into the shower.

10. How did it impact your professional life?

When I had the operation, I lost the job I had and had to find new work.  I now work only part-time and manage ok.

11. Do you have any tips or advice for others who have had, or are going to have, an ileostomy?

My advice would be to ask as many questions as possible and also do reasearch on, and learn from, all the information available on the internet. With me, it did not appear to be understood that I was suffering and it was all a huge shock as most people are relieved to get an ileostomy as it is an end to their problems.  

Be aware of the negatives, it’s not all fantastic as was made out to me. You will probably have some awful times but it is good to be well prepared and one step ahead. Make friends with the stoma nurse. Unfortunately, my doctor was not great and the nurses were awful. However I have now got a new doctor who is great and the product specialists are very helpful. Don’t be afraid to change providers if you are not happy.

(For UK readers: A big regret was not involving McMillan Nurses. Nobody suggested them and I thought they were only for terminally ill people. Don’t hesitate to get in contact with them. MacMillan nurses advise on all sorts of things and provide someone to talk to for people with cancer or so I am led to believe, but I never got involved with them as nobody suggested it and I did not know.)