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
leigh0203 barbs55
Posted
Hi there
?i found this forum yesterday and wish that i had found it about twelve months ago when i was in need of a bit of positive reinforcement. This is the first time i have told my story and i hope it helps anyone who might need a pick me up or maybe a good ending...
?I am going to make this as condensed as i can otherwise it may resemble a book if i went into great detail.
?In April 2015 after 2 months of increasingly bad stomach pains i found myself admitted to hospital. I actually had thought i had torn a stomahc muscle. i was a very fit 49 year old, 6 foot , 92kg Australian guy who apart from the odd cold had never really been sick. I dont really remember being admitted, my fiancee organised it as i was in the most severe pain i had ever experienced. The cause was a bowel blockage created by diverticulitis. I dont remember going into surgery either and after nine hours of operating the team had removed 30cm of bowel in the worst case of the disease they had seen, There was also a fistula between my bowel and bladder that had to be fixed which resulted in having some of my bladder taken out as well because they feared it was cancerous. The surgical team decided to staple the end of the bowel that had to be refixed and give my body some time to be out of anaesthetic and go back in the following morning to re attach.
?During the night the tissue gave way to the staples and the contents of my intestine spilled into my abdominal cavity. This resulted in fecal perotinitis, septic shock and in essence an extraordinary bad case of sepsis. in the following few days there were 7 subsequent large operations to try and "wash me out". I was put into an induced coma for 20 days to try and stabilise me. i started coming out of the coma and took weeks to start to comprehend what was going in . First memories were fear, pain and confusion. it was probably 2 more weeks in a drug hazed world that i started to understand what i was facing. I had woken with a stoma that i didn't understand, i had a tracheotomy and i was hooked up to a ventilator so i could not speak, i was catheterised (which lasted 7 months) and i had lost 30 kgs or 1/3 of my body weight and did not have the strength to lift a hand of the sheets. i was being fed through a gastric pipe going up my nose. Now i realised i was in real trouble. It was only much later that we were told that i was given a 14% chance of survival.
?Apart from the ongoing pain the 2 worst things were not being able to communicate
?and the ongoing vivid, brutal nearly demonic dreams. I think a cocktail of morphine, pethadine, fentanyl, ketamine and a million other drugs is the common cause but all the same really disturbing and still vivid today if i allow myself to go there.
?I ended up in ICU for 53 days and had to learn to speak and eat again when finally this huge contraption was removed from my throat. I had lost all muscle mass so had to learn to hold my head up and walk again. I spent another 7 weeks in hospital and then made it home where real rehab started. I was desperate to get home but things were really tough there.
?My amazing , remarkable, loving wife was with me every single day in hospital and was my part time nurse at home. If not for her i dread to think where i would be now.
?Today is 20 months since the initail op. There have been many returns to hospital, far too may antibiotics and a long battle with infection that has been won.
In the last 6 months we have got married , finished building our new house and i can finally say i feel good. There was many many dark days but i tried to keep a postive attitude throughout and knew there had to be way forward. Through a pretty tough and painful rehab involving good food, exercise and gym work i am back to 85kg and all blood indicators are back to normal. I am not silly enough to think i am totally out of the woods and there are ongoing little issues like living with a stoma for the rest of my days and so many huge scars to remind me of what happened but in the big picture thats easy. Life will never be exacly the same but i now appreciate it far more. The cliche of stopping to smell the roses could never be more true. if i can be of any assiatance to anybody on thier journey i would be delighted. I heard a quote the other day that said "going through adversity should not define who we are , it should help refine who we are".
cheers
?Leigh
barbs55 leigh0203
Posted
What an awful history you describe, and I am so sorry you, and your family, have had to go through all that. I wrote my story because I couldn't find anything about it online. There is now much more publicity about Sepsis, and the UK Sepsis Trust has been doing a lot of good work and publicity to make people more aware of Sepsis and its aftermath. I am so pleased you have had a positive outcome and survived, but it has been a long hard journey I am sure. I also hope that our stories will give encouragement to those who are currently in the middle of all this. Thank you so much for sharing, and good luck for the future.
julian150767 barbs55
Posted
hi bards55
?ive just read you story and it maid my reply to you to tell you about my mum's story. my mum is 72 on 16/12/2016 on the 15/11/2016 she was schedule hip replacment op.that went find but when she came out of hospital she kept being sick not holding her food down, this went on for another week not eating or drinking she got weeker and weeker then after a CT scan she went for emergency surgery for a perforated bowl. how this was mist and went on for so long is beyond me . now she is in ICU with all the tubs amd machines round her. the op was a success she is responding to treatment with a chest infection it is heatbreaking to see her like this but she is in the right place for all this she cant speak but she knows that we are there by nodding her head or squeezing ower hands. i'm very glad you are fine now your story has given us all some hope that my mum will make it all the best for the future
regards julian
barbs55 julian150767
Posted
julian150767 barbs55
Posted
Thanks barbs
For your kind words well it's been a long week she is responding to
Treatment and she is siting up in bed I can't believe that she is such a
Strong woman and it her 72 birthday all is going so well we are so happy baabs
rogers49635 barbs55
Posted
On March 29, 2009 a close friend of mine rushed me to St John's hospital in Clear Lake TX. I had a ruptured colon. I had a resection of the descending colon done on an emergency basis. I would know nothing for the next 45 days as I passed from St. John's to the VA hospital in Houston to a nursing home/hospice. I was not expected to live at any of the institutions. I spent many days on life support, held in a coma for more than 15 days. Then semi comatose for 30 more days. I had a colostomy and a wound vac. Unlike you I did not have a lot of pain but I had a premonition that I was gravely ill. The VA reversed the surgery due to a complication of the stoma. It took me nine months to recover. When I woke from the nightmare I also had hallucinations mostly from the trauma and morphine. I was paralyzed from the neck down due to not using any limbs for 45 days and other causes. In all I had a ruptured colon from diverticulitis, sepsis, peritonitis, total renal failure, double pneumonia and total paralysis. I was still laid open even after the second surgery to reverse the first surgery. I had a third surgery the following year due to a second infection because the stoma never closed. I also had to have a major hernia repaired with 6 layers of mesh. I am currently writing a book about my ordeal. Since my recovery, I can do most anything I wish. I had to learn how to walk, talk, feed and dress myself and slowly graduated from total bed bound to doing anything I desired. I have a twelve inch scar and a place where the stoma was excised. Just to make matters worse I was a diabetic, spinal arthritus and other major problems from military service. I have since traveled to China 6 times where I met my wife. All in all I lost 3 years to the hospitals. I live a full life because I refuse to give in to anything. I believe that God and the Angels protected me in my great hours of need. None of the doctors expected me to live. Of the first 20 days I remember only 5 minutes clearly. Of the next 25 days I remember very little except the hallucnations are a burning memory. One of my caregivers in the nursing home died of a ruptured appendix during my ordeal which shows how critical your care is under these circumstances. I never met the doctors that saved my life. I plan to do so soon. I live a full life on my 2 1/2 acre small farm and just finished building several structures in my barn. I have renovated the house which had been flooded by hurricane Ike on the property and made additions to my tractor barn. I am currently building some cabinets for the house. Renovations included new bamboo flooring and tile for the kitchen, repainting everything and cabinets for my new woodworking shop. I have built a complete water treatment plant for the well. Fenced in the farm and built platforms for the barn to get out of spring flood rains. My structures ca hold my truck and tractor if necessary. The farm is in a flood prone area due to poor drainage in this area. I was 62 when I began this journey. I am now 70 years old. With the right medical staff, rehabilitation and determination and a strong belief in God, I have made a good recovery. My wife does not understand much about it but then she is still struggling with learning good English. She means well and can be a delight. She works hard and thinks I can do anything. I had no one back in those days except a few good friends. Some of my friends I lost to cancer and heart attacks since that fateful day. To survive in my case was determination and strong will. Besides, I still have to finish restoring my sailboat. I hope to travel to England someday to see where my ancestors are from. The ordeal has left PTSD scars but I deal with that quietly as no one understands anyway. Life is good if you let it. I follow my advice not that of those who do not understand where you have been. I can get moody at times. I have sleep issues some days. Unless you have been down this road yourself, understanding is not possible not even for doctors. I have been told that I died several times in the first few days. I would not know for much of the first 45 days is a mystery. Waking up paralyzed from the neck down was the part that will remain with me forever. I refused to accept that fate so my work began. When I left the hospice, I cooked for two days and returned to the hospice and presented the entire staff with a feast as a show of my gratitude for giving back my life. My book is close to being done. Survival is not easy but recovery is even harder. I had to learn everything all over again. I had no family closer than Florida. Only friends could visit me in those dark days. Funny, one of my nurses was from Okinawa. I had met her mother while stationed there in the late 1960's. Small world department.
julian150767 rogers49635
Posted
Wow Mr Rogers
Your story has touched the warmth of my heart . I can't
Imagine what you have been through by the grace of God you
Are still here thank the Lord for that. As for my mum she is doing fine at 72 she is learning to walk again and each day she is getting stronger and stronger she is a fighter to it is tough
But she will get there in the end . At least we have a happy
Ending all the best for the future take care Julian bridgeman
From Amersham England
rogers49635 julian150767
Posted
Thank you for your kind words. I tell people that the prayer I said just before entering St. John's hospital made the difference in my initial survival. My prayer was simple. "Lord I need you help for I can not do this on my own." Many of my care givers believed in God. Now I am not a everyday church goer but I firmly believe in God and the Angels. I said this prayer again when I came out of the coma 45 days later. I am an Episcopalian, was an alter boy and rceived training when young. I am a Marine biologist and a US Army veteran. To me failure is not an option. Rehabilitation was a key factor. I do not give into pain. Hate taking unnecessary drugs, give the doctors hard time when they need it and the nurses and other care givers love. The first thing is to pick your hospitals carefully. In a crisis, I pick faith based hospitals such as Catholic or Episcopal hospitals are the best in loving care with government hospitals much lower. After my recovery I gave myself a present, a trip to China and then a few more, 6 in all. I never give in or give up even when tempted. I only take ibuprofen for pain and then just for sleep. Tell her a good recovery is possible but you have to ask God for the needed help. I did and it made all the difference. God and the Angels helped me because I was willing to do the work required. Life can be good if you believe and then put forth the effort. My scars both visable and invisable are ugly but life with friends and family is beautiful.
May God bless and bring your num full recovery.
From Galveston TX.
rogers49635
Posted
May God Bless and bring your MUM full recovery.
(gotta read before hitting my submit button.)
From Galveston TX
elizabeta93 barbs55
Posted
I recently had an emergency surgery for dead bowel. 75cm of my ileum was taken out. I'm 23yr old female... I've been trying to find survival stories from other people who had this happen to them but I can barely find any at all... and it's kind of worrisome... it's crazy that this can happen out of nowhere. My emergency room experience was crazy though. I showed up screaming in pain and the CT scan showed nothing so they discharged me and I came back couple hours later with an ambulance screaming in severe pain, and they doctor told me I was faking my symptoms because he thought I wanted drugs so he told me he's not giving me pain killers and that I need to stop faking my pain. I was discharged and sent home again with a taxi, and sure enough I start throwing up blood so I return again. They still didn't believe me they thought I was a druggie meanwhile I don't even take Tylenol and never did drugs in my life. Hours went by and I got worse and worse until they finally realized something was wrong so they made me get another CT scan and saw a lot of air and fluid everywhere.. had immediate emergency surgery. They told me I was septic and almost died. I'm still kind of traumatized from the whole thing and now I'm 7weeks from the surgery, I feel better but I keep reading that people get organ failure and so many complications months later. Not really sure what to expect from this point on but it's all in God's hands !
julian150767 elizabeta93
Posted
What a horror story that was you must have been absolutely
Petrified but only 23 years old . My mum went through a
Perforated bowel surgery at 72 and she nearly died but she
is doing fine now. She was so week after the surgery but it
Takes time to get better .when she is fully fit she is going to
Have is reverse surgery so she will have no stoma and the hole
in her stomach sewn up . You will be fine just hope your family
and friends support you and you will come out the other side
Smileling good luck to you.
Regards Julian London England
elizabeta93 barbs55
Posted
I recently had an emergency surgery for dead bowel. 75cm of my ileum was taken out. I'm 23yr old female... I've been trying to find survival stories from other people who had this happen to them but I can barely find any at all... and it's kind of worrisome... it's crazy that this can happen out of nowhere. My emergency room experience was crazy though. I showed up screaming in pain and the CT scan showed nothing so they discharged me and I came back couple hours later with an ambulance screaming in severe pain, and they doctor told me I was faking my symptoms because he thought I wanted drugs so he told me he's not giving me pain killers and that I need to stop faking my pain. I was discharged and sent home again with a taxi, and sure enough I start throwing up blood so I return again. They still didn't believe me they thought I was a druggie meanwhile I don't even take Tylenol and never did drugs in my life. Hours went by and I got worse and worse until they finally realized something was wrong so they made me get another CT scan and saw a lot of air and fluid everywhere.. had immediate emergency surgery. They told me I was septic and almost died. I'm still kind of traumatized from the whole thing and now I'm 7weeks from the surgery, I feel better but I keep reading that people get organ failure and so many complications months later. Not really sure what to expect from this point on but it's all in God's hands !
elizabeta93 barbs55
Posted
I recently had an emergency surgery for dead bowel. 75cm of my ileum was taken out. I'm 23yr old female... I've been trying to find survival stories from other people who had this happen to them but I can barely find any at all... and it's kind of worrisome... it's crazy that this can happen out of nowhere. My emergency room experience was crazy though. I showed up screaming in pain and the CT scan showed nothing so they discharged me and I came back couple hours later with an ambulance screaming in severe pain, and they doctor told me I was faking my symptoms because he thought I wanted drugs so he told me he's not giving me pain killers and that I need to stop faking my pain. I was discharged and sent home again with a taxi, and sure enough I start throwing up blood so I return again. They still didn't believe me they thought I was a druggie meanwhile I don't even take Tylenol and never did drugs in my life. Hours went by and I got worse and worse until they finally realized something was wrong so they made me get another CT scan and saw a lot of air and fluid everywhere.. had immediate emergency surgery. They told me I was septic and almost died. I'm still kind of traumatized from the whole thing and now I'm 7weeks from the surgery, I feel better but I keep reading that people get organ failure and so many complications months later. Not really sure what to expect from this point on but it's all in God's hands !
leigh0203 elizabeta93
Posted
wow what an awful story of people just not believing you, that must have been horrendous.
i too scoured the internet for stories of survival and they are really difficult to find. I tend to believe that a lot of us that have expereienced something that traumatic dont want to write about is it addresses the pain and anguish all over again. My original operation was nearly 2 years ago and as much i feel fit and healthy there are times when i wonder am i really out of the woods. Information i have read about organ failure and large complications tend to fall into an older demographic so you being so young your resillience will bounce you back as long as you keep that really strong mental attitude which i beleive is enormously important. To write about it shows bravery so keep up the good work and be proud of yourself. Because i was so dangeroulsy infected (53 days ICU and 20 days in a coma) i still get a monthly blood test by my infectious disease specilaist. It gives me piece of mind and we have found some niggling infections a couple of times we could then deal with before they caused more problems. It sounds like a cliche but listen to your body and if something is odd follow up.
i have tons more info i am delighted to share if you like, so if you have any questions let me know.
take care
Leigh
its not a quck recovery Elizabeth but
barbs55 elizabeta93
Posted
So sorry to hear your story, and how awful to not be believed. I can only say that Sepsis and perforated bowel IS hard to detect and Emergency rooms (A&E in UK) do frequently miss it at first. There is a big campaign in the UK at the moment by http://sepsistrust.org/ to get info out there to medical stuff. I want to be very positive however and say to you that I posted here originallybecause there was no information out there, but since then there has been a lot more published and a lot more understanding of what we have been trhough. It is my 10 year anniversary this year, and I am basically OK now. A lot of the complications are often a result of the original surgery, and if that goes well you may not have any of these (hernia/stoma reversal etc). You are only 7 weeks from surgery which I should estimate will take months to get over. (they say here a month of recovery for every hour you were in theatre?) and the shock of sudden illness affects you for a long time. You are doing really well so hold on to that and take it a day at a time. Recovery is a slow process but you will get there. One day this will be just something bad that happened to you in the past and you got over it. Best wishes.
elizabeta93 leigh0203
Posted
Thank you so much for responding back to me, it makes me feel a lot better to hear other people's stories. I can't believe you were in a coma, wow that's scary but shows how strong you are, I'm glad you're doing better ! I'm curious though, did you feel sharp random pains in your abdomen after the surgery? I've been feeling it and asked my doctor but they said as long as there's no vomiting or fever than it's not too concerning. I think I might have slight PTSD from the whole experience since everything I feel a sharp pain I'm like, oh God, please not again. 🤕 It's nerve wracking but I'm trying to listen to my body and hopefully I'll get through this.
elizabeta93 barbs55
Posted
Wow 10 years, that's amazing!!! I'm so so happy to hear that. I'm glad you're feeling great! Did you experience sharp random pains in your abdomen after surgery? I'm currently having some but doctor isn't too concerned, I'm not really sure what to expect ! Like what's normal and what's not. It's hard to determine even for doctors to diagnose if it's something serious. I was in the hospital for a total of 3 weeks. I got a C.Dif infection (soo horrible), then I got a wound infection, THEN they discovered an abscess so I had to get a drain put in my stomach. So my body has been through quite a bit but it could've been worse. I only had like 2 and a half feet of small intestine taken out and I've read that others had much more taken out so I'm grateful for that at least.. but it does worry me about what's going on inside there and the fact that's i was sepsis, idk how my kidneys will react in the upcoming months... hopefully it'll be okay (trying to stay positive)
barbs55 elizabeta93
Posted
Wound infections are VERY common after bowel surgery and most of us had them. Random pains in the abdomen after surgery is also normal, and goes on for a long time, sometimes it's internal stitches pulling, sometimes it's adhesions that form after the surgery. I found you just have to try and accept them and not dwell on then too much. Trying to stay positive is the best attitude to take, whilst expecting that as your body has been through a LOT it will take a long time to heal.
leigh0203 elizabeta93
Posted
Hi There
?i can only go on my experience which is pretty extreme in regard to your pains. I had 7 consecutive major ops to help "wash me out" over a really short space of time. the amount of scar tissue and general healing happening inside you is enormous. so yes there will be pains of varying intensity that you will get for quite a while. Sorry to be the bearer of bad news!! You know your body though and it wont take long to determine if something is really out of the ordinary or just more "healing pains" I dont really use terms like PTSD but rest assured you have been through some trauma and it takes a while to reconcile what you have been through mentally along with physically. This forum is such a great tool for you. I live in australia and found nothing at all nationally when i was searching deperately for info probably as you are now. Everyday will be different and put forward new challenges and before you know it your mind and body will settle down.
?cheers
Leigh