My perforated bowel - a result of undiagnosed Diverticulitis
Posted , 48 users are following.
On the morning of 17th July 2007 I was particularly happy. Summer Term had just ended so I had 6 weeks of holiday from my Teaching Assistant job ahead, my husband was coming back from a 3 week research visit to Australia on Friday and my first grandchild was due in August. Life seemed very good – I was listening to Women’s Hour, and my 16 year old son was asleep as usual upstairs. I felt a need to rush to the downstairs toilet and whilst sitting there fell forward with agonising and unexpected pain. I recall trying to shout my son’s name but being able to do so only weakly. After what seemed like hours, he arrived sleepily at the toilet door and asked what was wrong. I replied ‘this is the worst pain since childbirth’ (already acknowledged in my family as the gold standard for pain after two 3 day labours!) and he said’ better ring an ambulance then’……I recall a paramedic trying to open the toilet door to get to me, and then…….
I awoke 8 days later in Intensive Care.
So this part of my story is what everyone told me later. I was admitted to A&E and there were several hours of uncertainty as to what was occurring. Fortunately an experienced Consultant passed by and noticed how ill I was and took over the case, sending me for an X-ray which revealed air in the abdomen which meant a perforated organ, probably a bowel. He arranged for emergency surgery as the contents of the bowel would be leaking into the body effectively poisoning my system. My son called his best friend’s mother (and my friend) who came to the hospital and spoke with the consultant who said that my husband should be called as there was an 80% and rising chance that I would die in the next few hours. She made the call to my husband in Sydney and then passed the phone to the doctor who explained that I was to go into emergency surgery for a perforated bowel, would probably not survive and he needed to return at once. My husband immediately left for the airport where Singapore Airlines got him onto the next available flight to the UK with 32+ hours of travel ahead not knowing what he would find on arrival. As my son was only 16, they also called my brother as someone could be needed to make life and death decisions and my friend was asked if my husband would trust her to make those decisions in the meantime. The operation took place in the middle of night and lasted several hours – nearly a foot of bowel was removed and a stoma created to allow the bowel to heal. There had been a lot of bowel content dispersed over the body and severe sepsis had set in and after the surgery I was taken to ICU ventilated and sedated and not expected to survive.
My elder son was also called back from Sri Lanka where he was volunteering in a children’s home – he was called by his elder brother, my husband’s oldest son, who also arranged for a car to meet my husband at Heathrow and called him in Singapore to update him on the situation. It would be his story to describe his feelings but it doesn’t take much imagination to realise what a nightmare journey that must have been.
He arrived back very early Wednesday morning and the taxi driver rushed him to Leicester from Heathrow and to see me in ICU – the usual frightening scenario with lots of tubes, machines breathing for me, feeding me through tubes and monitoring all my vital signs.
Over the next few days his life had the nightmarish quality you would expect – hours at my bedside and then going home to deal with phone calls from family and friends and feeding the children, doing the washing and trying to keep some sort of normality in the home, whilst being told that the staff were concerned that I had not come round and each day like that was increasingly worrying.
I meanwhile was in a horror movie in my head where I was being held prisoner in the desert in the Middle East and then taken to an institution where I was to have my organs harvested whilst I was still alive. (I later learned that such hallucinations are normal and a result of both the drugs given and the general sedation experience).
When I awoke I saw my husband hovering at the end of the bed like a hologram and assumed it was some new Skype phone development where he could send me his picture whilst telephoning from Australia. He was unable to convince me that he was actually in the UK or that I had had emergency surgery and a colostomy. I assumed that the staff were lying to him too (paranoia is also a key feature of a stay in ICU).
Eventually I was transferred to a general ward where I spent 5 weeks recovering, and was discharged with a colostomy and a massive 11” long open wound – my abdomen had burst open after the surgery because of the systemic infection I had. Naively my husband and I thought that the wound would close in a few months and I would regain my strength and become one of those people where others said “Isn’t she marvellous, she’s had a colostomy but you’d never know”.
In fact the wound was still open when I returned to the hospital 11 months later to have to colostomy reversed - it never healed. This second surgery resulted in an ileostomy which was also reversed 6 months later, and another 12 months later I had my fourth surgery in December 2009 to repair the large incisional hernia the other operations left me with. I adapted well to having a colostomy, being in a wheelchair for a period, and to every aspect of my life being medicalised. I found the support of organisations like the Colostomy Association invaluable but was increasingly irritated by the stories of how so-and-so had climbed Everest with a stoma, or travelled round China or the Amazon basin. I’d never wanted to do those things before I was ill and I certainly don’t now. I found the incessant cultural clamour to be a ‘brave’ patient, to bear quietly and stoically my misfortunes, and to keep quiet about them as the months went by and family and friends were ready to move on and I wasn’t, particularly difficult.
I can only thank all the NHS staff who took care of me so well in those three years.
It is now over three years later and I am writing my story down because I couldn’t find out anything about perforated bowel when it happened to me, and I want someone to read this knowing that they are not the only person it happens to, and you can return to health afterwards. I would also recommend the website ICUsteps which is very helpful to people who’ve been in Intensive Care.
12 likes, 126 replies
rogers49635 barbs55
Posted
You have to select you hospital wisely. Now, a Catholic hospital in Pensacola, Sacred Heart Hospital, saved my life from a PE. I had been in the hospital for the removal of blood clotted veins. It is called vein stripping. This was caused by phlebitis. That was in the 70's. I remembered that. So when I knew I had a rupture (just felt like a problem with my colon) I chose St. Johns Hospital in Clear Lake TX knowing that I was in very serious trouble. I only remember a few minutes of the ER. I only remember a few minutes of the 20th day when transferred to the VA. I remember very little of the next 25 days. On the 45th day my mind finally cleared from the morphine and discovered that I was in a hospice nursing home. I recognized t because a friend of mine had worked there while living with me. She had lost her apartment from TS Allison. I was still cut wide open and paralyzed from the neck down. I had been revived several times during the initial surgery. I was in a coma the entire time in the first hospital and most of the VA time. I did not know what was going on during that first 45 days. I had the reversal surgery at the end of summer. but I was still split wide open. A third surgery a year later because the stoma did not close and I got another massive infection that they denied! When they finally did a ct scan, it showed a massive infection. I was homeless at the time camping out near a friends home while rebuilding it from Hurricane Ike. I had little money. I eventually got my RV back and lived in it for several years. I had a massive hernia that had strangled my colon and had to go a third surgery to fix that for another 9 months. That surgery has failed and I must have another surgery to remove the mesh they used in the third surgery. I am 70 now and this started when I was 62. I am writing a book on this.
rogers49635 barbs55
Posted
rogers49635 barbs55
Posted
birminghamcityfan barbs55
Posted
elizabeta93 barbs55
Posted
Has anyone had their hair fall out A LOT after the surgery??? I'm 2 months post op.... and my hair is coming out IN CHUNKS it's horrible. Did anyone else experience this and if so how long did it last for? And will it grow back again? Ugh. It just keeps getting better and better lol 😭
Guest elizabeta93
Posted
barbs55 elizabeta93
Posted
My hair did fall out for about a year after I think. I understood this was a side-effect of being in Intensive Care, but whether that's beause we are so ill or because of the drugs they give you in ICU or just the general stress/trauma I don't know. It DID stop eventully and my hair is fine now! My skin peeled off and all my nails had cracks/ridges in them too.
leigh45630 barbs55
Posted
barbs55 leigh45630
Posted
Forward and one Back. Hold on to the fact that recovery does happen, just taking longer than we might like! Good luck.
elizabeta93 barbs55
Posted
Thank you all for sharing your stories and giving your advice. This kind of thing is so rare so it helps to find others that have gone through it and have that emotional support. I was wondering.. has anyone here gotten pregnant after this surgery? I just turned 24 last month and I keep thinking of my future and I always wanted kids badly. I'm afriad of what'll happen. My surgeon said he didn't touch my uterus and there should be no issue getting pregnant, but my gynecologist told me that's not true because there could be scar tissue blocking the Fallopian tubes from all the inflammation I had from the surgery. I just wonder if anyone here had babies after this? And how was your pregnancy experience? My scar is about 10inches vertical on my entire abdomen.. and it hurts to stretch so I wonder how will pregnancy go..
And has anyone here had their illeocecal valve removed? Mine was removed because it was necrotic, and now I have an overgrowth of bad bacteria and similar symptoms to IBS. It sucks that this all happened from a simple laparoscopic appendectomy. and they weren't careful enough and caused this mesenteric ischemia. Oh well. I'm grateful to be alive. Just a sucky situation.
barbs55 elizabeta93
Posted
I cant answer your questions personally as I was 53 when it happened to me, but I do know people who have got pregnant after previous surgery and with scars and adhesions. I don't know where you are in the world, but I would hope a gynaecologist would be able to give some reassurance.
It does indeed suck that all this happens to us and you are right that we have to focus on the postives of survival. Good luck with falling pregnant.
lynn87242 barbs55
Posted
Has anyone had to decide to do the colon surgery on an elective basis? 4 months ago I was having lower abdominal pain was weak and couldn't eat-the doctor started treating me for a bladder infection 2 weeks later they ordered a CT scan I had to go straight to ER I had a perforated bowel an absolutely in
RDUSA1 barbs55
Posted
wendall barbs55
Posted
Hi Barbs I have just come across your very personal story regarding a perforated bowel . I hope you are doing well now. I sadly lost my mum in October form perforated bowel. Y mum did have diverticulitis but she wasnt given enough support of help in how to manage this. For years she had problems with painful swelling of the abdomen. And had test after tests. They said she had IBS.
On the cthe Friday my mum was in a lot of pain and her stomach was so big. Much bigger than before. my cousin called theGP and they then called for an Ambulance to transport her to hospital. It's. bit of blur as I was in London. When I arrived at the hospital mum was in ICU . I asked the doctor when he though the rupture had occurred . He informed me that it had actually ruptured on the Thursday ..
I was horrified that they hadn't investigated this on the Friday she was admitted. We were informed that mum was doing ok but had a chest infection which she had before being admitted. I sat by my mums bed all day and night. On the mondY they said she wasn't absorbing her food which was through a feeding tube. We were called into a room and informed that mum was very ill indeed. They said they still had a few options left. They were to increase her antibiotics andd a differed breathing mask... why did they not give her the max antibiotics to begin with. Surly by the time they operated they were totally aware how bad this was and sepsis could set I. If it hadn't already. There are so many answers I need to know regarding her care and treatment.
mum was not responding to anything I told them she was in pain and they told me she had a buzzer she could press to administer pain relief. I told them she was totally unresponsive and could not do this. So I sat with her and clicked it myself. She was clearly in pain and discomfort.
A doctors was standing by the door to the room we were in talking to the nurse inside and just came out that she had phumonia. She didn't inform me at all. Mum was wet through with sweet and she had swelled up through her entire body. On the Wednesday we were called into a room to say there was nothing more that could be done for my beautiful mother. She has Sepsis and phimosis. And was not able to breath unaided. I went into a fog I and could only think of the errors that were made by her own Gp and the hospital. This was so raw I had just lost my dad 6 months prior. We decided that the best thing to do for my mum was to switch of the machine. She had fought so very hard for 6 long days. I lied in the bed next to her kissing her and singing songs taliking about our past and all the fun things we had done as a family . And I told her she can go now . It took 26 minutes for mum to pass away.
Through my experience regarding mums condition and being admitted I feel there should be more awareness of how Diveticulitus and to inform the elderly and do regular scans . Especially as mums stomach wS constantly up and down. I really should have realised when I visited her the week before that it looked unusually bloated even for my mum. I'm sure this could have possibly been prevented had they done checks to see if she was constipated or had any blockage through her bowel. Especially with her long history.
Its still very very raw but it's nice to read you journey and. Very happy outcome. I just hope somewhere there would be more available information and monitoring. Mum had so much to live for . I hope my story can help other to keep a eye On the sighs get checked out. Remember just because you open your bowels or may be even very loose does not mean you don't have a blockage . Mums kept saying yes I've been .
Thank you you for reading my personal story and I hope it helped other.
barbs55 wendall
Posted
I am so sorry to hear how you lost your mother in such difficult circumstances.
I remember asking my Consultant about the Diverticulitis, which like your mother I had diagnosed as IBS, and the bursting of the Diverticula that causes the perforation of the bowel. He said Diverticulitis is like an abscess on the bowel and if it is not spotted and treated, like any boil type abscess, it will eventually burst. He said that even if I had come to Casualty (ER) with my stomach pains during the days before it burst, they would probably not have been able to diagnose that it was going to burst. Sometimes people are given antibiotics and the abscess goes down, but often that does not work either. He basically said that it is like a burst Appendix, an accident of nature that you cannot control for. Unlucky, rather than mismanagement in my case.
As well, discovering that it HAS burst is quite hard for Doctors, and similarly spotting that Sepsis is developing is not easy. There is a big campaign in the UK at the moment at https://sepsistrust.org/ which you might find helpful. This is to raise awareness and help Doctors to diagnose Sepsis earlier, as too many people are dying because they are not diagnosed quickly enough. Mine was only spotted by the luck of an experienced doctor walking past my bed and recognising the symptoms, so you have no need to feel guilty for failing to spot it - its not easy.
It must have been very hard losing your mum so soon after the loss of your Dad and I hope you've had some support through this. I am pleased you were able to be with her at the end, which would have been a great comfort to her. Best wishes for the New year.
gemma39613 wendall
Posted
hi Wendy you sound like you went threw the same as me i also lost my mother from a perforated bowl and watched her in pain for 6 long weeks not been able to help her it was heartbreaking she had also been diagnosed with cancer 6 months before and only had 12 months left to live as it had spread to her lymth nodes she fought so much with her cancer lost her hair was so weak but never gave up bless her then her bowel perforated she had so much going on all at once she just didn't stand a chance someone up there wanted her and she put up such a good fight i held her hand 2 years ago and watched her fade away iv never been the same person and i still don't believe she's not here anymore i really just cant get over it i do not cry alot still after 2 years as i am still in total shock and since my mum passed i have had 2 spine surgeries and docs think it was down to stress as my stress muscles are in my back and were i haven't greived properly the greive took it out in my back im not sure that can even happen but docs said stress can cause anything to happen im now waiting to see the spine specialist again for a poss 3rd opp to fuse 3 discs if it really is down to stress i think i need to get myself sorted but i don't no how and was wondering how you have coped is there any advice you can give to help me deal with it as i try so hard to just ignore it then when i think of her its like my heart crushes and it feels like it just lost her all over again in total shock and disbelief 😓
wendall barbs55
Posted
wendall gemma39613
Posted
it is a blur I had to clear my mums house out on my own deal with all the funeral arrangements the wake etc. It didn’t seem real at all.You asked how I cope . Well I take it’s hr by her day by day. The thing I feel help me the most is knowing she is at peace. Even if mum had survived the op the recover would have taken its toll her her fragile body. They said it would have taken years especially due to her age. Mum would not have been able to go back home even with the carers she already had . And would have gone into rehab for a long time then into a home. My mum would not have coped with having to leave her home. The other thing is the bag .. They would not have been able to reverse it which would have meant her having to deal with the bad situation which she had no idea had happened.
You see my dad passed 6mths before he had cancer and beat it but was left with a stoma bag for his bladder. It’s was hard looking after pa and having to help him with this bag which he hated. It would leak all over his bed which meant him having to wash in a cold bathroom in the middle of the night with only a heater l dad wasn’t the same once her had his bag. The problems he had which a difficult in a younger person let alone a 75 year old who had dementia setting in. For mum to have a bag would have brought so many painful memories for her and having to cope with bag change days etc would have been to much.
My my mum had so much stacked against her also due to other medical conditions many spinal surgeries cronic pain throughout her body. As much as I wanted her here and did not want to turn the machine off it was the correct thing to do for my mum. What gets me up each day is knowing she is a peace no more pain no more hospital appts go home visits etc. Mum had no idea what had happened to her for that I’m greatful. She knew if she didn’t have the surgery she would die and she knew the odds were very high re surviving etc and she agreed totally.
I am totally lost lost with her it’s those who are left behind that feel the pain isn’t it. Take comfort in knowing she isn’t conscious of anything and is free at last. You were there every step of the way and held her hand throughout everything. You mum would have know this for sure . You were a great daughter and you know our mums would not want us to be sad I’ll n very down. I can here my mum now. Don’t worry my love you must get in with your life as I don’t want you to be sad for me. So I try to remember this. Some days are worse than other but time does heal some of our pain and it’s not so raw.
You say say you will never be the same I totally agree how can you be the same when the most important ad influential person had gone from you life, but look at all the things she tough you how she raised you into this world to be a strong independent women. And yes to have feeling of great sadness . I also look a pictures of happier times when she was fit n well. Laughing and having a gd time. I try to hold on to these imagers and not the ones I saw in the hospital.
Gemma there is one certainty in life for us all which I think of is that we are all dying from the moment we are born . Some are taken far to soon as well. We all have this in common. We know it but it’s still a shock when it does happen. Try hold on to the happy times you shared together I try every day to be the mum she was for my children that is a great legacy to have. I know my mum loved me with all my hear and she would be deverstated if she saw me sad deppressed etc. So I do it for mom. Doesn’t always work but that a true tester meant to how great our mother were.
Im sorry to hear about you spinal problems and your many ops. I to suffer from same ish. I was due to have a decompression and stabilisation in my lumbar spine but had to cancel due to my par passing away last Mach and now my mum . I’m worried it could leave me more disabled than before, I also live with chronic pain , Rynards bladder problems fibromyalgia chronic fatigue anxiety depression among a few. I don’t know if I should have it done as I can walk atm well n a gd day . Oh I’ll just have to see how I feel. Living with chronic pain S so hard had problems sine the 80s. Then had back injury in 91.
I hope I’ve helped a little bit . Plse know you arnt alone. M here any time you need to talk. It’s nice speaking to people who are going through similar experiences.
Just take it day by day but R.E.M. to have you Time . It’s so important weather it’s relaxation candles n the bath plucking you eye brow getting your hair done. You need to look after yourself and reach out for help . I’m sorry it’s so long . Plse look after yourself and hope to chat again. Our mums are at peace now and that’s a great comfort. Love wendy x
vic_07103 wendall
Posted