I am not quite sure what to do. I have been through a horrible time of illness, however I feel the NHS could have helped more. Although in the end they did give me a life saving operation, so I suppose I should be grateful I am here.
Maybe it would help to hear what others think, I have spoken to my GP who say vahue things like 'You were very unlucky" and "I'm sorry you've had such an awful time"..but when asked about specifics things like, "well I suppose it couldn't have been predicted, it's very rare" (what happened)
The hospital discovered a small lipoma in 2008, located in the descending colon. I was not offered any follow up or monitoring and discharged. I was told that it was a 'lesion' that was not causing any problems and they weren't going to remove it. I was juts relieved nothing seemed to be up, was in the early stages of pregnancy and focusing on that. I wish I'd asked more but didn't, and as i'd heard of lesion before in e.g. a rash i actually thought it was something like a spot and might even be temporary like chicken pox spots can got into the throat, something like that. Especially as the illness that had prompted the colonoscopy had been an ongoing tummy bug which had spontaneously resolved.
Anyway I wish i had asked for more information as it was a 1-2cm lipoma at the time, they are generally slow growing benign tumours which are quite common but usually occur eg under the skin. In the colon they commonly become symptomatic over 2cm, the main first sign of this is abdominal pain. At over 4cm 75% of them are problematic in the colon, as they can cause serious complications such as bleeding, perforation, obstruction or intussusception (where they get pulled along with the peristalysis, the general muscular movements of the gut and pull the section of gut they are attached to along too, causing a telescoping effect in the bowel) This is a condition requiring urgent attention as the blood supply is decreased to the area, resulting in bowel iscemia, infarction leading to necrosis and usually resulting in death within 2-5 days.
So, 3 yrs after it was found, I began to get awful tummy cramps, like labout pains, I had to breathe through them. At the docs I had various prescriptions, for antispasmodics, anti-inflammatories, antibiotics for a suspected UTI, a recent IUD removed, an ultrasound of my womb and ovaries which was fine.
After about 2 months of this it became apparent it was a bowel problem as accompanying the cramps was first mucus, then blood, from the bowel. I was asked about previous bowel problems and told him of the colonoscopy report which had (as I thought) no problems. I was referred for some blood tests but before they came back the next week, I had returned to the GP as I was in more pain, could not eat and had been vomiting bile. The GP called the hospital to ask advice about referring me as an emergency but was advised to treat me as an outpatient and o make a referral for a colonoscopy which should only be about a week's wait. The GP told me to wait for this and if things worsened to go to A and E. I was given some opiate painkillers.
So, when things became very bad with the bleeding and pain I went to A & E, where they did a brief exam and said I had a rectal polyp, again they asked (I think) on entry if I had had previous bowel problems and I said no, believing that I hadn't. So, anyway, I'm not sure if that is why they didn't seem to check my report showing the lipoma, which would have helped with the diagnosis and also showed the lipoma had travelled, as it was not at the rectum. I was told my a diffferent female surgeon that they had checked my ultrasound that was clear, however no mention was made of the previous colonoscopy report. I was given an abdominal X-Ray which showed the bowel was empty but congested, and it was suggested I might be able to have an EUA (Examination under anaesthetic) however there were no available emergnecy slots The next morning I was urged to try to eat something, given lactulose and sent home to wait until the next week for a procedure to loop out the 'polyp' with a sigmoidoscopy.
I struggled though the next week at home and by the time Wednesday came my tummy had swollen up. They couldn't take it out as it was too big, it had reached the size of 7cm and had formed a 'stalk' of 14cm due to the peristalysis and cramps compressing and extending it. The sigmoidoscopy clinician couldn't find the base of it to see where it was attached. I was asked to return the next Monday for laproscopic surgery for resection.
More days and nights of no eating and sleeping went on, I lose about 2 stome in 3 weeks and overall couldn't eat for over 3 weeks. Weirdly I didn't feel hungry, it felt like my body knew it was unable to eat (the bowel was obstructed so I suppose it would not have stayed down anyway.) I was counting down the hours until the Monday and spent more of the time in bath which helped the cramps. It was a bit like being in labour for weeks.
When Monday finally came my tummy was very swollen and I think they told me after the op I was tachycardic (heartbeat had risen) but they had decided to operate anyway. I wonder if this would have put me at more of a risk than if it was normal. It went ok, they had to remove the sigmoid colon as the bowel could not be reduced, ie unravelled I suppose as it had been left too long, I think it degenerates after about 24 hrs. It was joined back together. I have a 14cm scar from where it was removed. I had to have IV antibiotics as apparently it was likely I would have an infection as the site was very contaminated. I supposed that was also due to it being left, I'm not sure.
Anyway i had to stay in a week, things have been ok since then but have to go to the toilet more frequently which i believe is due to the shortening of the bowel, I also need to wee more frequently and the bladder is more sensitive and painful, it sort of feels as if I need to go even when I don't. The GP have tested for cystitis / UTI and it isn't that. I also have pain in my lower left side which seems to be increasing and the GP thinks is due to scar tissue / adhesions. The GP is going to refer me back to the surgeon as I didn't get a proper follow up as he was called away to surgery. I got a doctor but he didn't examine me, I made sure after the 'lesion' experience I got him to explain things however when asked for specific things to look out for in terms of future problems he just said 'anything unusual'. I did ask about when the 'lesion' was first found and how big it was (1-2cm) and why it was not removed then, as it would have to have been 'dug out' and I suppose that would have the risk of perforation or complications.
I just think, if say they had checked it again in 2 ys after the initial finding, they could have then assessed the growth rate to see whether it was likely to cause me problems in the future. Horrible as it was I don't want to think what might have happened if I had been pregnant again, for example. Or in old age, when healing etc might have been worse.
I have found there is no specific guidance for clinicians about monitoring these lipomas in the colon. The general gist seems to be that if it's causing symptoms to take it out, they can be removed up to about 2cm sometimes through loops/colonoscopy, over that with surgery.
If they had told me from the start more specific information especially that the first sign if growth and symptoms was abdominal pain, I would have alerted my doctor to this and requested a repeat colonoscopy. It would have been possible to have removed it before the serious complication started,
months later.
I'm sorry this had got so long, it all went on a bit. I suppose I feel a bit responsibly in that if i had been more aware and asked more at the start then things could have been different. However I think the hospital consultants / surgeons need to explain things more to patients. I wonder if maybe when it was found, they were not entirely sure it was a lipoma, also I think it was not the same consultant who did the procedure, I have a feeling it was a locum and he didn't speak great English. However not sure I should mention that as I am not entirely sure. My brain may have been a bit pregnancy addled, I remember being worried I had had the colonoscopy without knowing I was pregnant at the time and that being my main concern. However I definitely remember the 'lesion' conversation and also seeing a picture of something like a small blob.
I think generally as well as explaining to patients, there could be a more pre-emptive approach for example the monitoring of the lipoma, particulary in my case as in child-bearing years and could have had potential to grow years into the future. Although generally rare in the gastrointestinal tract, the colon is the most common location and generally cause problems in females in age 50+. So, would i be right in writing to the hospital, via PALS perhaps? I am unsure whether to write an official complaint or they can just share the concerns with the staff. I still may have to go for a check and the surgeon who diagnosed me is the lead clinician. He has the reputation for being a very good surgeon and I know the complaints procedure states it won't change your treatment, to complain, but I wonder in reality if it might be a bit difficult.