Advice on coping with emergency colostomy please

Hello everyone,

2 months ago I found out that I needed a laproscopic procedure to remove my baby which was ectopic. This was after trying for a baby for a very long time and finally falling pregnant (just as me and my husband were about to start fertility testing) so this was devastating in itself. However during the procedure the surgeon perforated my bowel and I woke up to discover I had needed major surgery and had a colostomy. The surgeon blamed abdominal adhesions for the error as I had had surgery as a baby which he said was the cause.

I'm now home after having a month stay in hospital and a further laparotomy because they had also missed another perforation from the initial procedure which then caused me severe illness. I've also had a bowel blockage from more adhesions which needed more of my bowel to be cut away. I'm told that i could develop more blockages at any time over the next few years due to the way my body forms such severe adhesions, which is terrifying. I had a very bad experience during the second op where I woke up with no pain relief and it took almost an hour for anyone to pay any attention to me despite the fact I was screaming into my oxygen mask. I am quite traumatised by it and have said I will have no further major surgery if I get another obstruction because of it.

I've been told they hope to reverse the colostomy but I am on a very long waiting list to have this done (thanks to the poor NHS). I have repeated nightmares about having this surgery so I wonder if I will even be able to go through with it. I'm having a few issues with the bag and am really struggling to come to terms with everything that has happened. Just a couple of months ago I was fit and healthy and excited to finally be pregnant. I have been told I cannot have children now due to the damage done from adhesions so I am also grieving the loss of ever having a family as well as the baby I've lost.

I am alone all day and not really sleeping well at night. I do go out to the shops as long as I have someone with me but I can only go out for an hour or 2 before I urgently need to see to my bag. My stoma nurse doesn't know what else to suggest so I have to hope that will improve with time. I am starting to wonder if I am suffering with depression as I am struggling to get dressed or shower, and this is not like me. I hate seeing friends and family because I am constantly worrying the bag will make a noise or smell and I struggle to hold a proper conversation as all I can think about is my bowels! Is this normal at this stage? Will I feel better soon? I don't want to go on antidepressants if i can help it and counselling services in the UK involve a long wait. Does anyone have any advice for explaining to loved ones how you feel as I think some people think that now I'm 6 weeks post my last surgery I should be back to normal and going back to work. I work in health care and often work with stoma patients in a physical role so I'm definitely not physically or mentally ready for that yet!

Sorry for the long post, I just don't really have anyone to talk to about it except my poor husband who must be sick of hearing about my bowels!

Thank you for listening x

Purplehound,

I am so sorry you are going thru all of this. Losing your child is such a heartbreaking situation and to be forced to handle the knowledge that you probably will not have any other biological children and you wake up from surgery with a colostomy. My heart goes out to you.

I had my colostomy in September after being very ill with Crohns disease so my opinion regarding a colostomy is biased. After almost 4 months I am just now starting to feel like my incision won't "pop" open when I move. I am still concerned about noise and smell. M9 drops are wonderful for stopping the smell. Amazing. The noise.....nothing I can do about it. I try to muffle it with my hand and sometimes it works...sometimes not so much. I usually use those moments as teaching moments for Crohns and colostomy educational tutorials.

Returning to work...that is a decision between you and your doctor. Know that others do not understand until they have walked in your shoes.

I wish you the best of luck. You have come to a good online support network. We are here to help, share our own adventures or just listen.

Clo

I was recently diagnosed with PTSD from all the surgical, life support and all the body and mind were put thru. Don't be afraid to get help, the nightmares have subsided some for me, but its all new to me so I have hope they will improve more but not disappear as I am having reversal in 2 months which set off my nightmares.