Not much help or support for Diverticular Disease
Posted , 17 users are following.
I was diagnosed with Diverticular Disease in Dec 2013 after 4 days in hospital and the Drs having no clue what was wrong. After having a CT scan they found the problem. I was 30yrs old and if Im honest I was shocked. I felt this was an 'elderly' thing.
Since my diagnosis I have had 4 bouts of diverticulitis that I have dealt with myself. I take paracetamol and go on a liquid only diet for 4 days and until the symptoms go away. I had a sigmoid colonoscopy in April to see how much of my colon has these diverticula and the Dr said it was of medium severity at this point.
The only way I can describe the pain of a flare up is like having contractions, Ive had 3 children and would take childbirth over this any day.
The point Im trying to make is that I have found there is little or no support for people with this digestive disease. I read conflicting reports on what I should be eating to help live with this and its starting to take over my life. I run a business and have 3 children so I need to be able to manage this.
Natalie x
2 likes, 18 replies
jacqueline01135 natalie36477
Posted
sufferers because we collectively add on a daily basis a GOOD food guide, and a KEEP CLEAR one .Yes there are a few wriklys here but a sense of humour
is absulutely necessary We support each other aith lots of infomation regarding
this evil little toe rag and I for one thoroughly enjoy this gang of refuse collectors.
See you soon Jac
jacqueline01135 natalie36477
Posted
words, but the gremlin under my key board CANNOT spell
nimrod44 natalie36477
Posted
jacqueline01135 nimrod44
Posted
or type in the search thingy x Jac
Emis_Moderator nimrod44
Posted
This can be posted by any user and will not go for moderation.
Regards,
Alan
CauliColon natalie36477
Posted
I was mid-40s before a half-lifetimne of 'slow throughput' led to DD for me, I imagine. When DD became a management project, I was already legally blind and so the time menagement aspect (of DD) was not a significant overhead. But in your situation - with huge quality of life implications for you and your family - I would seriously be banging on doors for a surgical intervention. Quite why peoples gut goes soggy so much earlier in life these days (or so it seems to me) is the project the medics should be looking into, imho. I had a long spell on a medication that was designed to relax/soften 'smooth muscle' - a short time before the DD started to bite. This was for repeat UTI occurences. I don't know how specific that med was in targeting the urethra - rather than the gut walls - or even cardiovascular pipework? Time will tell.
But it does seem that if surgery were likely to remove a limited bunch of diverticula then 'at your time of life' (!) it should be an option open to you. Otherwise it looks like you are in for a long innings. :-(
Good Luck,
CC.
Dixieb natalie36477
Posted
Good luck.
CauliColon natalie36477
Posted
Fybogel has been mentioned. It's the latest in a history of bulking agents (possibly with some small, more active component) that is aimed at constipation it seems (from the nhs site http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?medicine=Fybogel ) The rider in the application speil is that it "may" help sufferers of DD. I wonder if with later onset sufferers if inded they have a composite of DD and either intractible colon or so called IBS? As an engineer (and I've said before!...) keeping the gut motile keeping pockets clear of grot are fairly 'at odds' with each other, aren't they? : You want bulking stuff to grip onto, but that same stuff bungs-up the pockets, surely! Maybe that's why the NHS article says, "may" help in DD. I think this conflict of mechanical issues with the gut is the reason why some people get on better with differing strategies - and the reason why there appears to be no unique, optimal management guidance coming from the establishment? Hence your own topic header is the 'bottom line' too!
All the 'help' appears anecdotal and it seems there is no way guaranteed to keep you on-your-feet, sevem-days-a-week. Which is much more stressful at your time of life. I hope your GP will be more helpful and not just treat you in the generic (nay geriatric) way. ....."Incoming!....." :-)
CC.
tom2424 natalie36477
Posted
justinneed2 tom2424
Posted
i found your post by typing lysein and DD
ive been researching for about 3 days now
you actually stopped my researched answer,
and i want to thank you ,i hope it suits me and others
that i believe in..going with l-lysine & mm ..currently trying
L-glutamine which i have researched for about a week also..
again thanks tom
eribaeve natalie36477
Posted
Haven't had Flare ups only continuous diarrhoea over 4 months so I need to find a way to manage it too.good luck
susan18660 eribaeve
Posted
midbugslife natalie36477
Posted
I have been suffering now for very many years with gut issues and in Jan 2013 I had a flexi Sigmoidoscopy! Which I don’t mind saying was the worst experience I have ever had.
Nothing showed up and was diagnosed with IBS and given the normal Hyoscine butylbromide and more recently have added Mebeverine to that also.
About 3 months ago I started to get a pain in my left side, which subsides with a BM, however it is normally always there.
I have visited many doctors and have many different reasons for this pain,
flare up of IBS
muscle pain
flare up of IBS
diverticulitis (because I was in pain when he jumped on my gut)
and more recently Diverticular
It is normal for me to have BM which switch from solid to lose but over the last 3 weeks or so I have had a few which have been darker than normal, and that with the pain in my left side made me worry so I went to the on call doc who said it’s this Diverticular
Said not much more then what it is, a budge like a sausage? Lol
Have had blood test which have always come back clear !
help, is there any risk of having this, given no pain relief, no guide nothing.
Hope someone can put my mind at rest.
I have a lot of stress at the moment, wife is disabled and farther has JUST had a liver transplant,
Any advice I will be grateful for
theshayman midbugslife
Posted
I was just told today that i have Diverticulosis and i have been suffering with a lot of pain for over 4 years due to a problem after a hernia op but then about 6 months ago my gp put me on ( Durogesic DTrans transdermal patch fentanyl ) patches and i am now on 50mcg / hr patches and it is a great relief because i ended up taking 4000mg per day of Tramadol and Pregablin per day which was making me a bit of a zombie. I do still take 600mg of the Pregablin as well as the patches and as you get used you will increase your level of patch but if you are in a lot of pain as i was its well worth asking your gp about them you will still feel it but its in the background most of the time and i can now sleep most nights as before i would go days until i would just drop. So i hope this is of some help because intense pain is a horrible thing
Well good luck and i hope it works for you
appendectomy natalie36477
Posted