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Search for answers with your ilestomy

Meet our member, Elizabeth @elizda, who experienced a shock when she learned not only did she have anal cancer, but she would have to get an ileostomy. An ileostomy is when an opening is made in the stomach in order to be able to drain the contents of the small intestine. This involves the use of colostomy bag to collect waste and it has a massive impact on lifestyle.

 Elizabeth tells us her story in order to support others who may have to experience this procedure and lifestyle change. 

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 realise. 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 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 in and 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, How did your loved ones reacted?

My family were scared and did not know how to react. No one 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 travel 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 cast adrift. Fortunately I have changed provider 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 get information from the internet. With me it did not appear to be understood that I was not 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 provider was very poor and the nurses were awful. However I have now got a new provider who is great and the product specialists are very helpful. Don’t be afraid to change providers if you are not happy. 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 advice 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.

avatar Louise-B

Author: Louise-B, Content & Community Manager

Community Manager of Carenity in France, Louise is also editor-in-chief of the Health Magazine to provide articles, videos and testimonials that focus on patients' experiences and making their voices heard. With a multidisciplinary background in journalism, she coordinates the writing of content for the Carenity platforms and facilitates the members' interaction on the site.

Comments

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on 11/8/18

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Hello everyone, I tagged you in this testimonial because I thought it would be of interest to you since you have gone through similar experiences. Please feel free to share your journey :)

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on 12/12/18

My ex had an ileostomy due have bowel problems from when he was younger and I would sometimes (not deliberately) would forget that he had an ileostomy. He told that he would not be here today if it wasn't for his older brother as they were sat watching TV one day (before I met them) and he (my ex) said that he had a strange feeling in his stomach and could hardly stay awake (I think that's what he said to me, but I can't remember exactly what he said now though as it was about 5 years ago now (I have been with my fiance for just over 4 and a half years now), so his brother rang for an ambulance which took him to the hospital and the doctor at the hospital said that he (my ex) had either a hole in or. Perforated either bowel or small intestine (I can't remember which he said it was now) and that if his brother hadn't rang for an ambulance when he did and got him to the hospital as fast as he did  my ex would've died as either his bowel or small intestine had either exploded or was close to exploding.

I haven't spoke to my ex since my birthday in 2013 when I was out for my birthday with my middle sister, her partner of 19 years, their two sons and my sister's partner's parents as I was staying with my sister after I had left my ex in the summer and he kept on messaging me every other day and would not leave me alome

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on 1/21/19

If anyone is interesting discussing more about ileostomies, then please check out our latest discussion about it here:

https://member.carenity.co.uk/forum/your-opinion-on-crohns-disease-treatments/digestive-ostomy-causes-equipment-and-psychological-impact-2685#15127