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.
12 likes, 126 replies
uc53209 barbs55
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barbs55 uc53209
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It is very annoying about 'climbing Everest' etc; most people who have been seriously ill just want to be living a normal life again. I am doing that now, although I did have to leave a job i loved which I wasn't well enough to go back to. My ward at LRI had several people with UC who had eventually had to have a stoma operation done, but they were very positive about the quality of life being so much better with a stoma (pain-free in many cases) compared with everyday life with UC before. I am sure there will be a lot of chat about this in the Ulcerative Colitis self-help forums?
I have gallstones now, and what makes me want to have the gallbladder removed is the very small threat of a gallbladder perforation (I never want to go there again!)
donna89206 barbs55
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ItsTheFitz barbs55
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Thank you for sharing. I worry about this happening to me since I've been diagnosed at a "young" age. Even today, I'm out sick because of the pain and exhaustion from diarrhea. I got warm and had chills. I've never been hospitalized from this illness. I seem to have flares where this happens then I get better. I've been given antibiotics two separate occasions, and eventually the diarrhea goes away. But then I'll have several days where there is blood in my stool. I usually only ever get about a week or two at most where my bowel movements are "normal." Then it eventually returns to constipation, then diarrhea and blood in my stool. I wish there was more they could do for this illness. I've just been told to eat more fiber, clear fluids when I have diarrhea. Oh and avoid seeds and nuts which are usually the cause of these infections, or so I'm told. I have an "anti-spasmodic" med In case of sudden flare that's supposed to help stop diarrhea, but it doesn't.
Hopefully I'm never hospitalized because of it, but it does really scare me. Because apparently the only solution is antibiotics and colon resection. Sounds like a cop out if you ask me.
MeilyMeils ItsTheFitz
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I think maybe you might want to get a second opinion ,I have had flare ups, and infections, but thankful no blood in my stool, I have been to 5 differen GI's in the last 15 years, and the good ones all agree, keep the stool moving,they beleive the stool that is trapped in the pockets of diverticuli cause the infection , I take fiber every day even when I have flare ups, I cut back then but do not stop for more than a day, have you ever had a colonoscopy? to see if you have other issues ? I also try and eat a yogurt a day, and I eat a little , I something ever hr or too, my body does not like digesting a big meal.I hope you get the help you need, the blood in your stool has me a bit worried All of my GI considered that serious enough to do more testing, I hope you have good insurance and can get another opinion, also reasurch on line any doc , before going to see them , find out what they specialize in , when they where last 'Board Certified" and rating of their other patients, good luck Fitz,
keny4 barbs55
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Serena99 barbs55
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I too had a perforated bowel. I have Crohn's Disease and a permanent colostomy and had developed a large hernia at the ostomy site. I had seen a surgeon about repairing the hernia but was told it was too much of a risk and could not be done. Three months later I was taken by ambulance to the nearest University hospital for emergency surgery. I was in intensive care for 2 weeks and in the hospital for an additional month. Because of the infection, the muscles on the left side of the abdomen were removed during this surgery. I was released with a wound vac on to go home and 3 days later admitted to my local hospital with a bowel obstruction and back into surgery for another month's stay. Two years later I was back in the hospital for a new fistula draining stool into the still unhealed previous wound and at that time back into surgery to try to rebuild the abdominal wall. I have just passed the 5 year mark from that first surgery and still am battling complications. Some days are good and some are the days where I just keep my head down and keep plodding along waiting for another good day.
vic_07103 Serena99
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barbs55 vic_07103
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"I wait for good days too but when I read you do, I thought I might go try and make one instead of waiting." Such sound advice. It is about trying to be grateful for what we have rather than wishing things to be different, and some days it IS very hard.
barbs55 Serena99
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I read your helpful advice to Shelly below, especially "So don't be too hard on yourself." That is a hard won idea, and you have definitely been through the mill to get there. Accepting we have good days and bad days is such an importnat part of recovery, Thank you so much for your very helpful contributions to this page and I wish you a lot more good days in future.
shelly50913 barbs55
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I'm thankful you recovered but also sad of a decision that was made10months ago... my mother was rushed to the hospital on 11-19-15 in severe pain. after having a ct she was admitted for a couple of reasons 14 days later she died. she had diverticulitis and was not treated for it. about 12 days after being at hospital after they had sedated her because she was hallucinating they did another ct and told us that my mothers bowels have died and she would not survive the surgery needed to remove them we made a decision to take her off ventilator and any other life saving devices as they assured us that there was no hope. she died 2 days later from sepsis. she would still squeeze my hand up until the day before and I Have regretted not waiting a little longer to see if she would come back to us. she had diverticulitis on her first ct in the emergency room and they missed it. they never let her bowel rest. continued to feed her even though she couldn't hold anything down after10 days of being on pain meds the pain returned and the bloating and the hallucinations. she couldn't sit still. after the last ct the scanned her belly and said it was full of air and that the only blood vessels they seen was get main artery and that's it. they never even told us she was septic. we found out that on her death certificate... I really think she would be here today if only......
Serena99 shelly50913
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I am so very sorry for your loss. One thing I learned through my ordeal is that you can never totally trust the medical professionals. They are only human and unfortunately the tests don't always tell them what they need to know. In my case, I was in the urgent care clinic every other day for a week telling them something was wrong and they kept telling me nothing was wrong and sending me home. Only because of my persistence am I here today. And with all of the scans and tests and everything else, I did not know I had diverticulitis until the perforated bowel and they took out the remaining stump of the colon that had been left from the colostomy in 1997 and this was in 2011.
So don't be too hard on yourself. You did the best you could with what you knew at the time. And I'm sure you did not want to see her in any more pain. Please cherish the good memories you have of her.
barbs55 shelly50913
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I am so sorry for your loss of your mother in such difficult circumstances. I know how we torture ourselves with 'if only's after the death of parent. It is hard to say things to comfort you, except that my partner was told that after sepsis has developed, the survival rate is less than 20%. I was very lucky, and I was fit and relatively young (in my early 50s). The surgery might have only prolonged your mother's pain, distress and indignity, rather than her life. My Consultant told me that diverticulitis is very hard to diagnose, and that if I had visited A&E the day before with my symptoms, they would probably have just sent me home with pain relief, calling it IBS.
I hope in time you will be able to dwell less on the last few days of your mother's life, and more on all the happier times. It is not a year yet and your giref will be very raw and the first anniversay is very hard. Please accept my condolences for your loss.
lola123 barbs55
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Sitting here reading all your stories and thank God, you have all got through it and on the road to recovery.
I'm here on the search for advise for the horror of my brothers life. He is a single dad to his boy with Austism, unable to work from a work related inujury to his back My brother with un-diagnosed diverticulitis, ended up in A & E with severe abdominal pain, must have been bad for him to ask my mum to drive him (an experience like no other). Had to have emgency where they removed half his bowel and fitted a colostomy bag. Cut open from groin to chest. Spent time in ICT, they needed the ICT bed, so while waiting for a bed on a ward, he got stuck in A & E. Naked except for a sheet, no blanket (hot in ICT) not so hot in A & E.
Got on a ward, basically no care or compassion being given at all. He is 41 Years old. Tubes still coming out of everywhere, both sides machines, tubes, drips etc. Pain relief given late every day, has to constantly request it, then it finally gets brought. Then have to wait til it kicks in, for it to then to start wearing off to nothing and the process starts again. Told him he has start to walk, which he has said, if you help me I will. (tubes, wires etc) been in bed now for 3 weeks, so weak and muscle wasting. They are quick enough to get him out of bed to dump him in a chair, but won't give him anything so he can get himself upright. Walking frame to lean on, nothing. Just expected to stand up from sitting position and walk.
He has been complained for the last week, he can't breath properly and noticed a lump under his arm. Being a weekend, waiting til today for a consultant to look at the resluts of the tests that they have carried out to see what they are going to do. Turns out he has a blood clot under his arm and pnemonia. (Probably from when they moved him from ICT to A&E to ward - in nothing more than a sheet)
Due to his back injury he asked for a bed more suitable that he could adjust, to be told they are for the elderly and inferm.
He is now not in very good place, mentally and honestly doesn't think he will get out of the hospital alive.
Me being 65 miles (whole family since he has been in there have had the sickness and diarrhea bug - in one form or another) so couldn't go down at weekends, incase he caught it, 2 kids at school, 1 at nursery and hubby who works all the hours God sends, I can't be with him and fight his corner. My sister tries and complains, but feels like it is on deaf ears. Every visit though it is a stand off over his pain relief. Everyone else in the ward is of the older generation, so he doesn't really have anything in common or anyone to talk to.
Visitors are never there when the Dr comes to ask questions.
What are we to do! I want to go down at the weekend, but now have a cold (run down for caring for averyone else and worrying about him) I don't want to kick off too much, in case his care deteriorates further.
Need help, don't know what to do.
Hans15 barbs55
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I'm so glad I found this, I'm a 21 year old girl who recently went for minor Day surgery that resulted in the surgeon burning a hole in my bowel. I went back to a&e a day later with agonising pain, but unfortunately the doctors/staff did not take me seriously and did no scans till 3 days later when a new doctor came on a recognised how severely ill I was. I was rushed for emergency surgery half hour after my scan, i think I was just in shock and wanted the pain to be gone so I zoned out at the thought I may not survive. I am very very lucky to be alive and very grateful to my surgeon for everything he did, he also performed my surgery laparoscopically so I was not left with any huge wounds. I woke up in ICU with a colostomy, I felt fine and relieved that my stomach no longer felt like it was going to pop. I was in hospital for a month where they found a solid haematoma in my pelvis, then two blood clots in my lungs. It was one thing after the other. But I'm discharged a week today & starting to feel a bit better but still breathless and sore. Your story gave me hope, as some days I'm just so fed up with this, being so far from the active life I once led! But I guess it will heal with time! Thank you x