An alarming lack of care

Digestive health
1

Hi,

I am 56, male and started to suffer with diverticular disease in 2006 when I felt bloated and passed blood.

I was diagnosed with severe diverticular disease and had polyps removed during an extremely painful colonoscopy. I was not given the results of a biopsy and spent many days worrying until I phoned and was told I was clear-which is why no-one had bothered to inform me.

I had another attack in 2008-and only my insistence meant that I was seen again. I was told that it would pass but I should expect a recurrence.

This year on Friday April 9th-late night-I started to pass blood again and felt very unwell. I had the emergency doctor out to me and was prescribed a strong antibiotic. I went to my own GP on Monday 12th April.

I was told that I would need another colonoscopy and to prepare for possible cancer. I was signed off work.

Two weeks later, nothing had happened.I went back and was given more antibiotics and the results of a bloodtest taken on the 13th. I was told to show the results to the specialist.

I tried returning to work, but could only manage one morning. I felt nauseous and very ill so got signed off for another two weeks.

Another week passed. I asked at the surgery why I hadn't heard anything. I was told that the request to the specialist hadn't been faxed until the 18th-1 week late. I was told to contact the Health Authority to see about an appointment.

When I phoned I was told that they hadn't received the request until the 27th April-15 days after I saw my GP. Then, when I asked about seeing a specialist I was told I would have a 6-week wait.

At this point I contacted Benenden Friendly Society who told me I could go privately.

The local private hospital could do nothing until my GP sent a referral. I saw a Locum. He said they were not prepared to help unless Benenden wrote to them confirming payment. I contacted Beneden and had them fax the confirmation to my GP. I had the GP fax the request to the hospital.

I saw a specialist. He wanted me to have a CT scan before the colonoscopy which was booked for today, May 17th.

They lost the CT scan request.

I eventually had the CT scan.

I took the preparation for the colonoscopy last night and then again this morning.

The colonoscopy has been postponed until Saturday 22nd may.

I wanted the CT scan results. The hospital said they would fax them to my GP. I walked to the surgery-only 1/2 mile. They said they didn't have the results. I lost my temper and walked out.

When I got home my GP phoned to say that, yes, he had got them-and nothing showed up.

I'm still unable to eat. My bowel plays up all the time. I feel terrible and can't work-although I tried again for 1 1/2 days.

It's now 5 weeks since I first saw my GP. I am truly disgusted at this lack of care in Thanet, Kent.

I hope other peoples' experiences are nothing like mine.

2

A development.

I went back to my GP today as I needed a further sick note. I asked for some reassurance as well. I have now been signed off for a further 4 weeks and been told that it could be Colitis...so-more reading this afternoon.

I certainly seem to have the synptoms-the oddeat one being an odd rash (very itchy) on my legs! I thought nothing of it until now-just considered it 'one of those things'

Isn't life weird at times?

Colonoscopy on Saturday. Whoopee. I wonder if they'll allow me a bottle of Jack Daniels?

3

Hi I certainly sympaphise with you I know exactly how you feel the only difference being im only 27 yrs old and it took 3 very painfull colonoscopys to final diagnose me I also have hiatal hernia acid reflux and oesophagitis just to top it off my pain is slowly getting worse to the point that about 30 mins after anything I eat or drink im in agony when I walk sit or lie I do not know my outlook yet but i have been doing all the research I can and for people my age the disease seems to be far more aggresive and I will probably need a bowel resection the thought of having a colostomy bag for 3 months terrifies me not only for myself but I do not want my girlfriend of 4 years to have to go through seeing me like that

any replies will be much appreciated and if theres anyone out there my kind of age suffering with the same ccondition i would very much like to talk to them

4

Hello adzdavis83 and Adrian J. Hello to all fellow sufferers.

I can certainly sympathise with both of you. I am double your age adz but have suffered for quite a few years.

There is a total lack of knowledge and sympathy within the NHS! There is a lack of care and also a lack of health professionals taking this awful disease seriously.

It is life changing and life threatening. Sufferers cannot plan from one day to the next. They never know when an attack is imminent. I am fed up with taking antibiotics. I am fed up with having to starve for days on end until I feel a bit better. I am fed with the mixed messages I get about what and what not to eat.

Diverticular disease must be taken seriously. When I was diagnosed I was given a leaflet. That was my treatment!

The attacks got so frequent that I went back to my GP and demanded a consultation with a gastro surgeon. After more invasive tests I was told I had an inflamed stomach and colitis too. The treatment involved being discharged and being told to go to the A&E should it flare up again!

Adrian, I am of a similar age to you. I too am a member of Benenden. They are a good back up to the NHS and paid for my tests last year because I was not an urgent case, according to the consultant.

When I have an attack I cannot walk because of the pain on my lower left. It hurts to pass water. I feel sick. I am totally constipated. I get a fever.

I also have some problem with my immune system. I leaves me with awful rashes, oral lichen planus and something called a scanty mixed anaerobic infection of the genital area.

My GP tells me I suffer all that because of the diverticular and colitis problems. Apparently the vitamins and other nutrients don't get digested properly with my bowel ailments. \"What can I do?\" I asked him. NOTHING!\" he replied.

5

See my reply to adz.

6

Adrian, I also meant to tell you that in the U.S. people are put to sleep for a Colonoscopy due to the discomfort. Is it my understanding that you are expected to remain awake in the U.K.??

7

Hi there,you have a choice of light sedation and you can still watch on the monitor or you can have Gas and Air (Entinox),