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01-22-2007, 08:22 PM
July 1965 -I was born naturally, full-term, with no obvious problems. The day after returning home from hospital I was rushed back with breathing difficulties and diagnosed as suffering with left-sided CDH. I underwent an emergency operation to repair the hernia and I was given a 50:50 chance of surviving this. I’m not sure whether patches were available in those days, but I wasn’t given one. The sides of the hole were stitched together and my mum’s recollection is a little unclear but she thinks the surgeon said he used the lining of the chest cavity / bowel to cover the hole. After a few uncertain days in an incubator, my recovery went well.
1965 – 1997- During the next 32 years I led a normal, active life and even represented my county at cross-country running. Although I did occasionally suffer some pain to my left side as a teenager this was never investigated and I never had any x-rays. After school, I went to University and gained three degrees. I married Jeff in 1992 and I’m now employed as a lecturer.
October 1997 - I gave birth to a healthy baby boy and I suffered no problems in labour or afterwards. Soon after this I fell pregnant again, but this time with twins!
December 1998 - My pregnancy went well until I was 33 weeks pregnant and I attended a routine check-up. The hospital identified that there may be a problem as one of the twins was not thriving so I was admitted to hospital for observation. During this, I was sent for a scan and while getting on / off the bed I twisted my side and then I experienced a lot of pain under my ribs and around my back. The pain got worse throughout the night until I was in agony, but there was little the nurses could give me as most medications would affect the babies. The pain persisted and the doctors could not identify what was wrong with me, but whatever it was the twins were now suffering so I was booked in for an emergency c-section. My twin daughters were delivered on 9th December and although they were premature and very small (three and four pounds) they recovered well after a week in SCUBU. After the epidural had worn off, the severe pain in my left side returned and I was given pethidine, morphine and voltarol but nothing touched the pain. The next day my stomach started to expand at an alarming rate – I was told that it was wind and perfectly natural, but by the end of the day it was clear that something was wrong. At 11.30pm I was given a barium enema to investigate whether I had a twisted bowel. The results of the x-ray were a total shock to us all. They revealed that there was a length of large bowel in my chest and that it was going through a large hole in my diaphragm. I had an emergency operation during the early hours of the morning, but the surgeon was unable to free the bowel and so left it in my chest and disfunctioned it by giving me an ileostomy.
Unfortunately, during this time my bowel had perforated and this wasn’t noticed during the operation. Over the next two days I became very poorly and I was eventually diagnosed with peritonitis. I was rushed to another hospital and given caecostomy to disfunction the part of the bowel which was perforated. I was on a ventilator for 2 days and in intensive care for 6 days with septicaemia and pneumonia. Eventually, and very slowly, I recovered enough to leave hospital at the end of January 1999.
April – August 1999 - As soon as I was a bit stronger, another operation was needed as the loop of bowel was at risk of strangulating within my chest. Although I was weak, the surgeon operated and inserted a PTFE patch to repair the hole in my diaphragm and removed the bowel from my chest. He said the hole was a lot bigger than he expected (around 3 sq. inches!). The recovery from the operation was very slow and only 2 weeks after leaving hospital it was apparent that I had an infection in the wound / or in the patch. I was given various courses of antibiotics throughout the summer and eventually when these didn't work I was re-admitted to hospital. My surgeon said that once infection had been introduced into the patch it was nearly impossible to get rid of and that he may have to remove the patch, leave me for 6 months with a diaphragmatic hernia and then put in another patch once the infection in the area had cleared. I fought for an alternative course of action and as a last resort he inserted a subphrenic drain (via CT-scan) under the diaphragm to drain off the infected fluid and this also enabled us to inject antibiotic liquid directly to the site. This eventually worked, although it did all seem like trial and error. The amount of infected fluid gradually reduced and after 3 weeks the drain was removed and I returned to part-time work.
January 2000 - Once I was free all infection, I had an operation to reverse my two colostomies and put my digestive system back together again! This was successful and I suffered no problems after this operation. I returned to full time work in April 2000 and experienced no problems until last year.
April 2004 – December 2004 - Without warning, my thoracotomy scar started becoming very red and raised and eventually a painful lump developed. After a number of visits to the outpatients departments and a course of strong antibiotics and anti-inflammatory drugs, the surgeon recommended an exploratory operation to remove the lump and identify it’s cause and swab for infection. In June, a thoracotomy revealed that I had a large infected area – probably coming from the patch. The surgeon put in a drain and this was left in situ and drained fluid for 2 months. During this time, I was treated with 9 different antibiotics, but unfortunately the infection persisted and the infected fluid kept draining. Eventually, I was admitted to hospital in early October to have the PTFE patch covering my diaphragmatic hernia removed. This was successful and after contracting MRSA I finally made a full recovery and felt well enough to return to work full-time in January.
March 2005 - I'm really well at the moment - I although I do get really tired still. My situation now is that I have nothing replacing the PTFE patch, and I am held together by an awful lot of scar tissue caused by the excessive amount of infection! The prognosis is good and my surgeon believes the scar tissue will hold together as it is a very strong material. I have been extremely fortunate so far in that I haven’t needed another operation to insert another patch.”
Written by Jacqui (Great Britain)
2005
1965 – 1997- During the next 32 years I led a normal, active life and even represented my county at cross-country running. Although I did occasionally suffer some pain to my left side as a teenager this was never investigated and I never had any x-rays. After school, I went to University and gained three degrees. I married Jeff in 1992 and I’m now employed as a lecturer.
October 1997 - I gave birth to a healthy baby boy and I suffered no problems in labour or afterwards. Soon after this I fell pregnant again, but this time with twins!
December 1998 - My pregnancy went well until I was 33 weeks pregnant and I attended a routine check-up. The hospital identified that there may be a problem as one of the twins was not thriving so I was admitted to hospital for observation. During this, I was sent for a scan and while getting on / off the bed I twisted my side and then I experienced a lot of pain under my ribs and around my back. The pain got worse throughout the night until I was in agony, but there was little the nurses could give me as most medications would affect the babies. The pain persisted and the doctors could not identify what was wrong with me, but whatever it was the twins were now suffering so I was booked in for an emergency c-section. My twin daughters were delivered on 9th December and although they were premature and very small (three and four pounds) they recovered well after a week in SCUBU. After the epidural had worn off, the severe pain in my left side returned and I was given pethidine, morphine and voltarol but nothing touched the pain. The next day my stomach started to expand at an alarming rate – I was told that it was wind and perfectly natural, but by the end of the day it was clear that something was wrong. At 11.30pm I was given a barium enema to investigate whether I had a twisted bowel. The results of the x-ray were a total shock to us all. They revealed that there was a length of large bowel in my chest and that it was going through a large hole in my diaphragm. I had an emergency operation during the early hours of the morning, but the surgeon was unable to free the bowel and so left it in my chest and disfunctioned it by giving me an ileostomy.
Unfortunately, during this time my bowel had perforated and this wasn’t noticed during the operation. Over the next two days I became very poorly and I was eventually diagnosed with peritonitis. I was rushed to another hospital and given caecostomy to disfunction the part of the bowel which was perforated. I was on a ventilator for 2 days and in intensive care for 6 days with septicaemia and pneumonia. Eventually, and very slowly, I recovered enough to leave hospital at the end of January 1999.
April – August 1999 - As soon as I was a bit stronger, another operation was needed as the loop of bowel was at risk of strangulating within my chest. Although I was weak, the surgeon operated and inserted a PTFE patch to repair the hole in my diaphragm and removed the bowel from my chest. He said the hole was a lot bigger than he expected (around 3 sq. inches!). The recovery from the operation was very slow and only 2 weeks after leaving hospital it was apparent that I had an infection in the wound / or in the patch. I was given various courses of antibiotics throughout the summer and eventually when these didn't work I was re-admitted to hospital. My surgeon said that once infection had been introduced into the patch it was nearly impossible to get rid of and that he may have to remove the patch, leave me for 6 months with a diaphragmatic hernia and then put in another patch once the infection in the area had cleared. I fought for an alternative course of action and as a last resort he inserted a subphrenic drain (via CT-scan) under the diaphragm to drain off the infected fluid and this also enabled us to inject antibiotic liquid directly to the site. This eventually worked, although it did all seem like trial and error. The amount of infected fluid gradually reduced and after 3 weeks the drain was removed and I returned to part-time work.
January 2000 - Once I was free all infection, I had an operation to reverse my two colostomies and put my digestive system back together again! This was successful and I suffered no problems after this operation. I returned to full time work in April 2000 and experienced no problems until last year.
April 2004 – December 2004 - Without warning, my thoracotomy scar started becoming very red and raised and eventually a painful lump developed. After a number of visits to the outpatients departments and a course of strong antibiotics and anti-inflammatory drugs, the surgeon recommended an exploratory operation to remove the lump and identify it’s cause and swab for infection. In June, a thoracotomy revealed that I had a large infected area – probably coming from the patch. The surgeon put in a drain and this was left in situ and drained fluid for 2 months. During this time, I was treated with 9 different antibiotics, but unfortunately the infection persisted and the infected fluid kept draining. Eventually, I was admitted to hospital in early October to have the PTFE patch covering my diaphragmatic hernia removed. This was successful and after contracting MRSA I finally made a full recovery and felt well enough to return to work full-time in January.
March 2005 - I'm really well at the moment - I although I do get really tired still. My situation now is that I have nothing replacing the PTFE patch, and I am held together by an awful lot of scar tissue caused by the excessive amount of infection! The prognosis is good and my surgeon believes the scar tissue will hold together as it is a very strong material. I have been extremely fortunate so far in that I haven’t needed another operation to insert another patch.”
Written by Jacqui (Great Britain)
2005