Patient experience of diverticular disease

One of my patients has kindly written about her experience with complicated diverticular disease for the benefit of others

Living with Diverticular Disease – a patient perspective.

Five years ago, at the age of 45, it was a shock to be told that I had the bowel of a 70 year old! The following is my personal account of living with the condition and how it has affected me.

Originally from Goa, India, but born in East Africa, I was brought up on a balanced diet that included lots of high fibre fruit and vegetables. Fresh food has always been a staple part of my diet, and is something that I have tried to instil in my own five children.

With three daughters, twin sons and a full time job, life has always been hectic. I had no significant abdominal problems until the birth of my youngest children, my twin sons, in July 2000. The twin pregnancy, along with the fact that they had to be delivered by caesarean section, took its toll on my body and resulted in me having to have a total abdominal hysterectomy at the age of 42. At the time, my consultant informed me that I had adhesions from my caesarean section.

Approximately one and a half years after my hysterectomy, in May 2008, I went to my GP complaining of sharp intermittent lower abdominal pains that were beginning to give me concern. I was told that these were likely to be adhesions from my caesarean section, and so increasing my fluid intake was the best thing to do to relieve the pain.

A year later, I required further surgery to correct a prolapsed bladder and bowel that had occurred due to my hysterectomy. My consultant also performed laparoscopic adhesiolysis.

After this I kept generally well and began to exercise more frequently as part of my normal lifestyle. I did occasionally experience episodes of left sided and central abdominal pain, but put these down to adhesions since the pain was similar to the pain I had in 2008, and hence did not seek medical help. Each time it occurred, I simply increased my fluid intake and managed the pain with paracetamol and Neurofen. Retrospectively, my bowel habits had started to change as I had increased frequency and my stools would regularly change from soft to hard, constipated stools.

It was in April 2011 that the abdominal pain was becoming more consistent and was radiating to my lower abdomen. It made me feel unwell, and the pain was not being relieved with over-the-counter medication. I also had low-grade pyrexia.  Having seen an out of hours GP, I was referred to the Royal Sussex County Hospital with query diverticular or gynaecological pathology.

I was admitted under the care of Mr Etienne Moore, and fortunately I responded to IV antibiotics and pain relief. I was discharged home with a view to having a follow up colonoscopy and enteric MRI scan to investigate the possibility of Diverticular disease.

I saw Mr Moore in an outpatient clinic in July 2011, and told him that I had started to notice that certain foods exacerbated my pain, for example when I ate celery. I was shown a photograph of my bowel where he had removed some faeces that had got stuck in the diverticulum at colonoscopy. The tests showed that I had “impressive” diverticular disease throughout the colon from the caecum all the way to the sigmoid colon. Although diverticular disease is not common in Asians, there is a strong family history in my case as several members of my maternal family, including my mother, suffer from the same condition. Mr Moore advised me to maintain a high fibre diet when well, and to switch to low fibre diet with increased fluid intake when I felt unwell. I was then discharged back to primary care.

Later that year, I had several episodes of the disease that required antibiotic therapy. With each episode, I started to feel tired, with occasional rigors and a high temperature. I was spending longer in the toilet and had increased frequency, but was only passing small amounts of stool each time. The pain was getting significantly worse and I would often scream in pain. Given my diagnosis, I accepted that this was now my norm and controlled the pain using paracetamol and Neurofen. I had changed my diet to a low fibre one, as advised previously by Mr Moore, but the bout I had in December of that year forced me to take a short time off work. In 2012, I had two consecutive episodes in June, followed by a further episode in February 2013.

By Summer 2013, my general health was a lot worse. Prior to a holiday in Turkey in August, I began to feel unwell and so switched to a low fibre diet again. On my return back to the UK, my symptoms had not improved and so I sought medical advice from my GP on 29th August. By now, I was going to the toilet 8-16 times daily, but was still only passing small amounts of stool with mucous which had not previously been present. My GP was quite concerned so prescribed antibiotics, and told me to return if there was no resolve. Whilst on the course of antibiotics, I was unable to control my high temperature with paracetamol and Neurofen, and so it remained constantly above 38 degrees C.

Having completed the course of antibiotics I had not improved, and the pain was beginning to be unbearable. I went back to the surgery on the 9th September and saw a different GP who prescribed different antibiotics, metronidazole, as well as codeine for the pain. I was told that there was no point in sending me to hospital, as they would only give me stronger pain-killers. I tried to explain that the pain was severe now and caused me to sweat, despite a reduction in bowel movement. However, seeing as I showed no evidence of ‘guarding’ on abdominal examination, I was sent home.

Within 48 hours at home on the new antibiotics I started to projectile vomit and experience severe headaches, both of which were listed side effects of the drug. My husband called the GP surgery and asked for a home visit as I was feeling very weak, and was constantly going to the toilet. I was seen by a different GP to the ones I had seen previously, and on examination, I was very tender over my left iliac fossa area and was guarding. I told the GP about not being able to control my temperature, and my husband expressed concern that I was not getting any better.  At this point I was referred to hospital.

Admitted into hospital with a white count of 20 and diverticulitis, I was asked why I had waited so long before coming in. I was told that in future I needed to come in earlier given the severity of my condition. I asked to be referred back to Mr. Moore but unfortunately was told that this was not possible because he was no longer actively treating me and he was not the emergency consultant on-call at that time. At the hospital, I was treated on IV antibiotics and pain-killers, which helped me to start feeling better. My bowel habits also began to improve. A CT scan was performed and showed a likely enterocolic fistula, however, the consultant I was under the care of felt that a fistula was unlikely, as I would have had “more raging diarrhoea”. I was discharged home after six days to primary care, and was told that I would receive a follow up appointment in two months to have an endoscopy.

Initially whilst at home I started to feel better, but before long, my bowel habits returned to being excessive again. On the evening on 20th September 2013 I started to pass blood with the small amounts of stool. I had no temperature at this stage. The pain was unbearable each time I went to the toilet, and I was sweating profusely. Although I did not want to call 111 due to a previous awful experience with the service, I did recognise that I needed medical advice regarding the bleeding. Whilst out getting more paracetamol with my husband, I noted my GP surgery lights were on.  I asked my husband to stop outside my GP practice and ask if there was a GP available for advice. I appreciated it was a Saturday, so if this was not possible, I had resigned myself to going to A&E.  Fortunately, I managed to see my GP after a somewhat difficult dialogue with the receptionist.  My GP consulted the hospital and was advised that providing I was stable I could stay at home over the weekend, but if the symptoms worsened I should go to A&E with my relevant patient records. I lasted at home until Monday 23rd September, but seeing as I did not feel better, I went to A&E.

On arrival to Royal Sussex County hospital I was admitted under Mr Moore’s care. Initially examined by one of the SPRs, I was told that surgery was almost inevitable, and the possibility of a colostomy was mentioned. This made me worry inwardly, because despite working on a bowel surgical ward as a staff nurse, the thought of having a colostomy, and the impact it would have on my lifestyle, was frightening.

On 24th September I was seen by Mr. Moore and I informed him of the results of the CT scan and what I was told by the consultant that cared for me during my recent previous admission. I was informed that I needed surgery urgently due to my decreasing strength, as antibiotics would only provide a temporary relief. We discussed the need for a colostomy, and I recall breaking down in tears. Although I understood the need for this, it was not what I wanted. The stoma nurses that came to see me were kind and helpful, but I could not stop crying.

I had surgery on 25th September. At the point of surgery, it was only when I saw the anaesthetist that I realised the magnitude of my illness, as he proceeded to talk about the central venous lines and arterial lines that I was going to need. It was then explained that there was concern over whether there was more than the large and small bowel involved as it was thought that my bladder might also have been affected. Consequently, I was told that the chances of having a colostomy were 80%.

I was transferred to HDU on the Digestive Diseases unit following 4.5hrs of surgery and 6hrs in recovery. As I came round, I was devastated to know that I now had a colostomy. I recall being told that I had had surgery just in time, since my abdomen was covered in pus balls and my bowel had perforated. The surgery performed was a Hartmann’s procedure, with the formation of a colostomy and I also had to have a small bowel resection.

The first couple of days in hospital were uneventful, though I was in tremendous pain. However, I then had some post- operative complications associated with pain control, but these were dealt with efficiently. My stoma took a few days to work, which was not helped by the fact that I started to vomit. An x-ray showed that I had constipation, and so I was initially given glycerine suppositories. These had no effect, so I was also given Lactulose. I was also encouraged to mobilise, despite the pain. The first bowel movement via the stoma was the most painful; I could feel every movement of peristalsis. After this, it got easier.

I had the common challenges of very sore skin and leaking bags. Recalling knowledge from my nursing days, I asked for the two piece system which meant I was not having to rip adhesive from my skin x2/3 daily. My previous nursing skills came in handy, and soon I was managing my colostomy with relative ease.

The care I received from all concerned was outstanding during my hospital stay, and I was discharged home after 10 days. I was advised that I could eat a normal diet but that some foods may give me more flatulence than others. Though I had the worst part of the bowel removed, I was still conscious that I still had diverticular disease through the rest of my large bowel.

Once stronger I ensured that I ate a balanced diet and did not exclude anything, with the exception of carbonated drinks. If I ate foods that gave me flatulence, I ensured that I was in a place where I could let the air out of the bag, as the smell was quite potent. There were some issues for the first few weeks with my rectal stump. Given that my surgery was an emergency, I still had faeces in the stump, which started to slide up and down thus giving me a sensation of wanting to go to the toilet but not being able to produce anything. Eventually as my body healed and I got stronger I managed to pass these and then also passed mucous stools every 2/3 days. After 8 weeks, I was able to return to work, albeit phased initially.

When I was seen by Mr Moore as an outpatient, he re-iterated how sick I had been. Now, in a better frame of mind, I started to question the events prior to surgery. I was told to talk about my emotions openly and that my emotional state was a post-traumatic stress effect following the extensive surgery.

Although I did not want the colostomy, I know that it saved my life, and once all the obstacles were dealt with I was thrilled to be pain free and was grateful that I could lead a relatively normal life. I did not have to change my wardrobe too much, although I did miss doing abdominal exercises – the one thing I was now told not to do!

My personal goal was to have a reversal done, and after an examination in November 2013 my consultant agreed to perform this in March 2014. I found myself extremely anxious this time because of the possibility of having a second open laparotomy if there were too many adhesions present to perform keyhole surgery.

To my surprise Mr Moore persevered with the laparoscopic surgery for the reversal procedure. I remember him telling me that he hoped that his pain was my gain. My abdomen was full of adhesions, and before Mr Moore was able to re-join the bowel together, he had to deal with these first.  My rectal stump was stuck to my small bowel and had also embedded itself around my ovary and fallopian tube that had been left in place when I had my hysterectomy. This could explain why I had so much post-operative pain from this area, and also why the phosphate enema pre-op caused me so much discomfort.

Again, the period post-operative was uneventful until the third day when I started to vomit and the pain was increasing. I was quickly made nil by mouth, and after resting the bowel I was allowed fluids and then a solid diet. I was discharged home after 9 days. Opening my bowels for the first time was painful and I needed haemorrhoid cream to deal with anal fissures from the surgery. My first proper stools came after 8 days post surgery.

My second day at home was probably the worst as I felt as though I needed to go to the toilet, but was not able to produce very much. I took a dose of lactulose, and after 10 visits to the toilet, I passed a mixture of constipated stool, soft stool and diarrhoea. That night I slept really well and gradually started to feel better as each day passed.

At the time of writing, I am three weeks post-op, and my body has resumed a more normal bowel function now, though I still go to the toilet about four times daily.  I can eat all foods and am already tolerating a medium fibre diet as well as a high fluid intake. I look forward to being able to exercise again in the near future.

Despite surgery I still live with diverticular disease. I am aware that I ended up with complications that don’t affect the majority of people, but writing this article has shown me that I was showing signs of the disease long before my diagnosis, and this is a common pattern for patients who suffer with the condition.

Diverticular disease is often referred to as a disease of the West associated with not enough fibre in the diet and so it can be controlled with a well-balanced diet. However, there are many myths out there about what to eat and what not to eat, which should be put to rest in favour of comprehensive dietary advice for patients to follow. For me, the dietary advice given to eat a high fibre diet when well and low fibre diet when unwell has generally worked; it is just unfortunate that I have a severe form of the disease. I feel that there is a need for better education and information for patients so that they are better informed of the disease they have.

Furthermore, I believe that more research should be invested in to look further into the causative factors of diverticular disease. What other factors are involved? Once diagnosed, how many courses of antibiotics should you be given before being referred back to a specialist? Generally this condition has been associated with an older age group, but is this still the case or are we now seeing people being diagnosed at an earlier age?

I would also like to let others know that I found the following website very helpful regarding physiotherapy after my abdominal surgery.

I was very fortunate to receive the right care in the end. In the emergency setting, the quality of care was outstanding and I was lucky enough to be treated by a very skilled colorectal specialist consultant.

Written by a patient in April 2014