My perforated bowel - a result of undiagnosed Diverticulitis

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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.

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  • Posted

    Thanks for telling your story. I have recently been told I have extensive diverticulitis following a colonoscopy undertaken as it was thought I might have cancer. I dont which is great but now have been placed on antibiotics and steroids and told I might need to have some bowel removed.

    It seems so awful what you have been through but if my operation prevents what you experienced it will be worthwhile.

    I have terrible pain and diarreahand often cant leave home with my problems so I hope to get more help soon!

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  • Posted

    I really sympathise with the pain and diarrhea which was a feature of my life with diverticulitis. But I had no treatment so hopefully the antibiotics and steroids will improve things. If you have to have some bowel removed (and I understand it's much easier done as elective surgery rather than as an emergency) I can tell you that without that last bit of bowel I hardly ever have diarrhoea, or any bowel pain, and my day-to-day life is much improved as a result. Not the way I would have chosen to get here but a positive outcome anyway.
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  • Posted

    Hi, how awful for you. I can sympathise and cannot begin to tell you how strong you must have been to survive what you have been through. I too, am a victim of a perforated bowel and at present I am in a state of limbo. One morning in June I was teaching when I doubled up in pain. I became worse over the next two hours I left work and drove myself to the hospital. I was admitted with a perforated bowel.I was told it may be cancer and I may have to have emergency surgery. I was nil by mouth for 11days, then puy on a soft diet and given 6 weeks of antibiotics and sent home, thankfully I did not need surgery. I was told that I had diverticuler disease. Last week I had a colonoscopy which was excrutiating agony, they removed a small colonis polyp and said the perforation had healed, but i would get an appointment in ten days. Needless to say I am still getting so much tummy pain and bloating, I am so anxious that they have missed something, as the colonoscopy report that I was given does not even mention diverticuler disease, yet I was assuming that the pain of the colonoscopy was because of just that! I am totally confused, fed up of being so tired and feel so alone with my symptoms! Before my bowel perforated I had no symptoms apart from a little bit of bloatedness!
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  • Posted

    It sounds like you need more information from the appointment to discuss the results. I think having some diverticular disease is quite common as you get older so isn't necessary a big medical problem unless something gets trapped in one of the diverticula setting up an infection which can become an abcess and is when that abcess bursts that you get bowel perforation. Fortunately they managed to control it in your case with antibiotics and avoid surgery and colostomy etc. You really need to ask questions at the appointment about the continued pain and bloating and whether it is caused by diverticulitis. There's some information here I found helpful

    www.corecharity.org.uk/Diverticular-disease.html

    It will take a while to recover from what happened to you so be kind to yourself.....best wishes

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  • Posted

    Thanks Barbs55, I will read the link you have passed on Thank you! I have phoned the hospital to get an appt asap. I really need to speak to someone and get some answers with my on going symptom. I will let you know how I get on. I need to get back to work asap as I have no wage coming in and bills are mounting up. I will take it easy and will not over do things. It is not the best case scenario but needs must! In the meantime take care and look after yourself and thanks again!
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  • Posted

    Thank you for posting this. I am currently in a nightmare similar to yours. My mum is currently critically ill after a bowel perforation in November from un-diagnosed divertivulitis, which was fixed but has subsequently been re-admitted with severe sepsis from untreated left over infection from inital perforation. Her bowels and stomach are now not working also, so is currently being parentally fed.

    I have taken great confort from your story and am very hopeful that my mum makes a similiar recovery. Thank you

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  • Posted

    I am so sorry to hear about your mum. I was parenterally fed in ICU and nasally-fed for quite a while when back on the Ward because the bowel tends to stop working in these circumstances and needs to rest. in my ward i was opposite another middle-aged woman with a perforated bowel who also made a good recovery. I really hope you have some good news soon.. I am pleased you have taken some comfort from my story, and send you and your family my best wishes.
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  • Posted

    I was recently urgently admitted to hospital with severe diverticulitis. My stomach had swollen up huge. The doctors were considering doing an op for a bag for a bowel. They put the tube up the nose and down to the stomach which released lots of air and all I remember is feeling very ill. Nil by mouth for over a week, not that I felt like eating anyway. Eventually I came home and went for a 'virtual colonoscopy' which replaces the barium enema they said. It was a scan while they injected dye into me and put a tube up to insert a bit of air into the bowel. After all my worrying it was nothing to worry about. Today they say they want to do further investigations, for 'completeness'. I am frantic. I feel well, have no bleeding, just a bit of pain in the side which I have had for years with the diverticulitis.
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  • Posted

    Hi Barb, My experience is very similar to yours. After a day of pain, at 4am I finally got my husband to take me to the ER. A CT scan immediately showed that my colon had burst. Emergency surgery was called for and as I was being rushed down the hall, I begged one of the nurses to look after my husband who was not well himself. I also underwent a long surgery and I came out of it with a stoma.

    Unfortunately, when I awoke, my husband was not by my side. While I was out, he had suffered a massive heart attack and had actually been in the OR, having open heart surgery at the same time that I was being operated on. He was then in the ICU with me.

    I recovered enough to go home in a week, with surgery to reverse the stoma scheduled to be done in 8 weeks. I also had a long incision, however, it healed nicely.

    My poor husband, however, unable to be weaned from the respirator, stayed behind in hospital. He fought hard for 2 months, but finally lost his battle before my second surgery.

    Going through all of this alone was very difficult (I have no children) but I made it. I believe that my concern for him so out weighed fear for myself that my body healed in spite of anything I did. I never even thought of the stoma as a permenate thing. The hole almost healed up before the reversal was done.

    Two years later, I also developed an incisional hernia. That was taken care of laproscopically and I only spent one night in hospital.

    The docs could never tell me why the perforation happened. There was and continues to be no underlying disease and except for desperately missing my husband, it might have never happened.

    Thanks so much for sharing your story. I'm so glad I found it.

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  • Posted

    Thank you for letting me read your story and although I am so pleased to hear you have made such a good recovery, I am also so sorry that you have lost your husband, and at such a difficult time. Please accept my heartfelt sympathies.

    One of my Doctors suggested that we just look at it like an Appendicitis - it is just one of those out-of-the-blue things that sometimes happens. I am glad you found this site helpful.

    Best wishes for the future.

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  • Posted

    Your original post sounds exactly like my incident in Apr 2013. Nothing apparently wrong one minute then the blinding pain ,and waking up 6 days later in intensive care at Heartlands in Birmingham ,and had an emergency colostomy ,but was discharged after a speedy recovery in 2 weeks ,(my surgeon was amazed !!!)The human body is a fragile thing and we ,well at least I HADNT appreciated the damage we do with eating inappropriate food .

    I am due to have my reversal soon and am apprehensive about it ,as the last time I was operated on was seriously ill, and I have no ideas what to expect following the procedure ?

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  • Posted

    Very impressed with your speedy recovery the first time, which does indicate that the reversal should go well too. Someone pointed out to me that an 'elective' surgery when you go in knowing what is going to happen, is always easier to recover from than the sort of traumatic emergency admission we both experienced. I certainly found the reversal surgeries easier, and with a quicker recovery time. Some surgeons/hospitals do a reversal in two stages, where you have the colostomy reversed but a temporary ileostomy put in whilst it heals (this is what I had, so I had a reversal from one to the other in July, an then the final reversal in November. Other places do it in one go - my surgeon said it depended what they found when they went in!
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  • Posted

    Thanks Barbs ,This reversal procedure has been explained by the surgeon who will be doing my operation ,and he said there is a slight chance of a ileostomy ,But just two days ago I had to have the dreaded camera passed through my bowels and the consultant who did that said all looked good to do it in one go. I Don't know what to think as he also said my bowels (for a 58 year old man ) were in great condition ,a minute amount of diverticulitis , local to the stoma ,which will be removed when I get the reversal done .

    It took me a while to come to terms with the " WHY ME " as I was and am quite an active person ,whereas im sure your the same and see overweight smokers /drinkers living a normal life .But everyday I just thank my lucky stars that im still here !!

    Lastly if anyone else reads this ,When and if you need the endoscopy (camera) you do not need sedation when it goes through the stoma ,but you certainly will when they check your back passage .Not pleasant !!!

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  • Posted

    I realize I am not from the UK but I have been desperately searching for information and I found this forum and it sounds like most here had circumstances like mine. On November 6, 2013, I was at my desk working in the afternoon when I began experiencing abdominal pain. I left the office at about 5:00 pm and during the hour and a half commute home the pain continued to increase. By the time I arrived home the pain was intense and I told my wife I was not going to eat the dinner she had already prepared. I decided I was just going to go to bed and sleep it off. After preparing for bed I collapsed and fell to the floor from pain while walking down the hall. My wife said she was going to call an ambulance and I said I was just going to go to bed and sleep it off and I would be fine in the morning. She insisted I go to the hospital. We went to the hospital and within a very few minutes I was examined and a doctor was running tests. X-Rays and a CT scan originally diagnosed a perforated duodenum and I needed emergency surgery to repair it. A surgical team was called in and surgery began just after midnight, the doctor told my wife it would take about an hour. As it turned out, I was misdiagnosed. When the surgeon opened me up he discovered my bowel was perforated and he had to remove ten inches in a surgery lasting about four hours. I of course knew nothing about this until the next day when I discovered myself in a hospital room with 8 tubes in me. When the doctor came in the room later that day some of his first comments to me were “you are an extremely lucky man”. I was sort of groggy about it and did not understand and he said “number one, you’re alive and number two, you don’t have a colostomy bag”. Every medical person I have talked to in the past 33 days have basically told me the same thing. I was in the hospital for ten days and the hospital staff was wonderful and I could not have asked for a more compassionate group. I had nothing to eat or drink for 7 days, not as much as an ice chip as my doctor did not want anything to pass through my system. I had an NG tube keeping everything out of my stomach for these 7 days and I must admit, this was probably the worst part of the situation. Because of the leakage from the intestine into the abdomen, I had a significant amount of antibiotics. By IV while in the hospital, then another 7 days by pill form when I was sent home. I had two drain lines installed during surgery that remained in even when I was sent home from the hospital and I had to measure the output and keep meticulous records of the output until they were removed ten days later. The surgical incision itself was open when I came home from the hospital and my wife was taught at the hospital how to pack the wound and redress it. For two weeks she changed the packing and dressing every day. The open wound closed last week. Like other stories I have read here, I had diverticulitis but was never told to watch my diet or anything and that is the only thing the surgeon can point to that may have caused this to happen. So I am now in a position where my insides just randomly exploded without warning, there was nothing (apparently) I could have done to prevent it, and I had no warning it was happening. How do I prevent this from happening again? I’m recovering well I believe but I’m still tired a lot. My stamina is not where it was but what do I expect so close to surgery. I’m reluctant to do much more than minor things and the doctor has me on some restrictions. I went back to work today and it was difficult (desk work, administrative) to make it through the full day but I am riding with a co-worker so I needed to work his schedule. I’m 56 years old and although this is not the first thing I have had repaired in my life it sure is the most serious. Right now I’m tired all the time still and I don’t really feel like doing much of anything. I still have some residual pain but not real serious, I suspect it is scar tissue. I follow up with the surgeon in two days and I will discuss it with him then. I have trouble laying comfortably on my side as it feels like everything sort of falls over when I lay on my side. I would really like to get some sort of idea of a realistic recovery time I can expect.
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  • Posted

    dmheil ,I Don't think anyone can answer the question of an expected recovery time ,I recovered well others on this forum still have issues ,But as we are still here and able to write our thoughts says it all really .The only other alternative to recovering at all fast or slow was "Not "

    I will say this expect the tiredness to continue for some time ,what everyone here had was major .

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