Diverticular disease
Posted , 5 users are following.
7 weeks ago, I passed a significant amount of blood and collapsed.
i was hospitalised for over a week, and, following a series of investigations, (endoscopy/colonoscopy) was told I had moderate to severe diverticulitis, as well as gastritis. I had had no previous symptoms, and a pretty healthy diet for the past ten years or so (I'm 51).
Once my bleeding had stopped, I was released from hospital, told to eat more fibre and not become constipated. I was anaemic from blood loss, and very tired, so was off work for a further 3 weeks before returning part-time.
Since then, I have not had a 'normal' motion; either I feel bloated and they are stringy and strained or I have cramps and diarrhea. My GP has given me laxatives to address the former and a course of antibiotics for the latter. But, still, after 7 weeks, my gut is not behaving normally. My diet is limited to porridge, Weetabix, chicken, fish and a bit of steamed veg, as all the advise I have been given seems quite contradictory.
Speaking with a GP friend, he expressed surprise that I had not seen a consultant, nor had a CT scan, given the severity of the initial episode, to assess the extent of the diveticulars.
i wondered if anyone had any advice, or had similar experience, as at a bit of a loss how to proceed.
thank you
0 likes, 13 replies
jacob0373 andrew80718
Posted
I had all the same symptoms after my first attack mate. That was 2.5 months ago pal. Since then I've been to A&E three times, and just got out of a four day hospital stay. I now have resection surgery scheduled the 2nd week in January. I'm an expat living in America. I'd see a specialist if you're in the UK. Hopefully the NHS will sign off on it if that'll sort the matter. I've had chronic diverticulitis since my first hospitalization. For some of us surgery is the only solution. Best of luck pal👍🏻
andrew80718 jacob0373
Posted
Sounds as if you've had a grim time of it - and sounds similar to me. Have you had bleeding every time it's recurred? My first attack came out of nothing - I was at the football with my son and had a massive bleed and collapsed. Bleeding continued for about a week. very frustrated as, apart from saying I have diverticulitis, no suggested intervention apart from diet.
I'm seeing my GP at the beginning of January and going to ask to see a specialist and have a CT scan. Good luck with the surgery. How long is the recovery time?
jacob0373 andrew80718
Posted
If I were in your shoes mate I'd see the specialist asap in order to sort the bleeding. I'd also do whatever I could to get surgery if the scope and CT indicate it. Based on your symptoms it sounds as if it's a chronic case. I'm 46 and my quality of life is boll**ks pal. I've gone from running 3 miles every day to living in pain. Consequently l now know where every loo is at Old Trafford😂. One must know where all bathrooms are with this disease. Going on holiday with this disease is simply unthinkable in my honest opinion. After I took a long look at my life I decided sod it, it's time to get my life back--time for surgery. Best of luck mate👌🏼
andrew80718 jacob0373
Posted
Many thanks for the advice, much appreciated!
You're a red?!? It was in the gents at the Etihad where I had my bleed, and I collapsed watching the game! Not sure you'll be that sympathetic now that you know my allegiance!
Best wishes,
Andrew
jacob0373 andrew80718
Posted
Guilty as charged pal😂👍🏻. At least you're not a scouser😉😂. Take care of yourself mate, and get that bleeding sorted.
Best,
Jacob
susan95516 andrew80718
Posted
they only do surgery in the Uk if its really bad i have had it for nearly 3 years i control it by diet but i can still feel bloted and in pain i take mabevarin before meals and fybergel every morning i hope you feel better soon and you dont need surgery
andrew80718 susan95516
Posted
Thank you.
Have you seen a consultant, or is it your GP who gives support and guidance?
What specific changes have you made to your diet? The information I have been given is contradictory. My GP tells me just to eat more fibre, but reading up on the subject, there are a whole range of things that are suggested to avoid (seeds, corn, nuts, red meat, fried food, alcohol, brocolli, certain fruit etc etc).
A friend who is a GP suggested seeing a specialist and said that, as my initial episode was so severe, I should see a specialist to check how damaged and thin the wall of my intestine was, as there may be an increased risk of it being perforated.
Many thanks for your advice.
mjf3814 andrew80718
Posted
Hi Andrew
Unfortunately the standard practice in the UK is control with diet and medication, unless you develop one of the complications. I was diagnosed 20 years ago, and that is how I have been managing ever since, through 6 really painful flares. My cousin had the same condition, and he did have a resection, but only because he developed a fistula between bowel and bladder.
I did have a scan after the last episode in 2016, but only because the Diverticular Disease (DD) was so bad the specialist could not insert the scope. If that was not a problem for you, then they would have got a very clear picture of your insides, and the damage. I still have the snotty letter the Consultant sent to my GP (without bothering to see me) saying "only Diverticular Disease - a benign condition". I hope they get it and they'll see just how "benign" it is!
It is good you are seeing your GP and you can ask for a scan, but unless they suspect cancer (which clearly they don't) you will wait months for an appointment (unless you can afford to pay or have health insurance). As you have already discovered, the information is very limited and confusing, and your GP will probably not help much. Mine freely admitted I knew more about managing the disease than she did.
It can take a long time to get over an attack, as your insides heal. My shortest period was 6 weeks, and the last attack took over a year before the symptoms had finally gone. It is most important you don't become constipated, so my GP prescribed a soluble fibre solution called Fybogel, which I take daily. You have been advised to eat more fibre, but it is important the the fibre is soluble fibre, not insoluble. GOOGLE will help you identify sources, but what you are having so far sounds sensible. Also you should stick to small portions, not overload your stomach, and if overweight, lose weight. Everyone is different and it will take time, trial and error to identify what foods you can eat and what upsets you. For example, I can't take gluten and full fat, but I can eat seeds, corn, nuts, red meat, broccoli, berries.
If you think you are having another attack (not just the healing niggles), then I would suggest you stick to a clear fluid for 48 hours, then slowly reintroduce bland low fibre food, and finally small portions of soluble fibre. If in any doubt, or it gets worse, go to the GP, who will probably prescribe a couple of antibiotics, which do have unpleasant side effects, but clear the infection. If the GP thinks you just have inflammation without infection though, they probably won't prescribe anything.
This is a lifelong condition which needs to be managed. 50% of people over 50 have it, mostly without symptoms, rising to around 75% aged over 80! Best wishes
andrew80718 mjf3814
Posted
Many thanks for that, very comprehensive and really helpful - much more so than anything I've heard from my GP.
is it normal to bleed heavily during an episode? I was passing a significant amount, and collapsed a number of times as my blood pressure slumped. As a result, I was off work for an extended period. Does your diverticulitis impact on your ability to work? I'm returning to work full time in the new year, and am concerned about my ability to cope. I often do 15 hour days, and not sure that is sustainable now.
I am comparatively fit, and exercise a fair amount. I have only felt up to walking since my episode, and, as I imagine is always the case when feeling particularly unwell, I can't imagine being able to do those things I took for granted - swimming, running etc. Once the flare up settles, can I anticipate being able to lead a normal life - diet apart?
Many thanks
Andrew
andrew80718
Posted
Hello again.
Your advice regarding soluble/insoluble fibre is really helpful.
Weetabix had formed the mainstay of my diet in the last few weeks, alongside soup. As it is predominantly insoluble fibre, would I be better served having porridge, which I believe is mainly soluble fibre?
When you say that it has taken up to a year for you to recover from a flare up, does that mean that include your motions getting back to normal ?(apologies, I really struggle to know the appropriate vocabulary!)
Many thanks, your post was so incredibly helpful!
Andrew
mjf3814 andrew80718
Posted
Hi Andrew
Useless me managed to wipe out my reply, so I'll start again!
I had my 1st attack with heavy bleeding at age 50, totally out of the blue. I was told the bleeding was initially a small tear, then after the diagnosis of DD I was told it would have been due to ruptured diverticula. As yours has been so severe, I suggest you keep an eye on it, and if the bleeding keeps recurring, you must go back to your doctor and push for the consultation and scan. If you are concerned about your blood pressure (BP) you can buy home arm monitoring kits. I have one for a different medical reason.
I was an office worker and apart from the days I was at Hospital, took no time off work. I do remember being doubled up in pain over the photocopier, but I never discussed it with my employer. I no longer suffer from feeling embarrassed - we all function the same way.
However, your hours are excessive, and unless you are the boss, I cannot see that an employer would expect you to work 15 hours a day. I do appreciate you may be putting in the hours for financial reasons. Please think of this as your body warning you that at your age it is time to slow down and take good care of yourself - a discussion you may need to have with your family and support network.
Now to the subject of bowels. Most people with DD suffer from bloating/constipation/diarrhoea and I'm no exception. I dealt with it by accepting I was not going to return to my once a day habit. Like susan95516, who I am sure will tell you she remembers being where you are now, I take Mebeverin, for spasms and cramps and Fybogel daily each morning. I normally now have around 3 movements - 2 within a couple of hours of rising, and then 1 in the afternoon/evening. I feel that an empty bowel is a good bowel with DD, as long as you don't strain.
At 50, I was a competitive table tennis player and walker, and once the flares subsided I returned to a normal way of life. These days I no longer play or walk, but do Aquafit 4 times a week instead. I do take certain precautions, by visiting the toilet before I leave the house, or take part in activity. I also carry spare pants and wet wipes with me. It's a precaution and I can count on one hand the times I've used them in all these years. So yes, you will most probably get back to normal, though at first you think you never will. Some people unfortunately, do have ongoing problems which you will read about in this forum, so I won't pretend all in the garden is rosy.
Soluble fibre is a soft, sticky kind of fibre that our bodies can digest. It helps reduce your blood cholesterol and helps ease constipation. It is found in foods such as Oats - porridge. So yes, porridge (proper whole oats, not the powdery dust you get in sachets) would be better for you.
Insoluble fibre is also called ‘roughage’ and cannot be digested. It passes through your gut without being broken down and helps keep your bowels healthy. This type of fibre is found in: Wholegrain foods , cereal, bran. I once read of a person told to eat more fibre after an attack of DD eating a whole bowl of All-Bran and suffered very badly.
These next few months will be a learning experience for you - we are all different and what works for me may not work for you. I'm not a medical person and can only offer what I have experienced. Best wishes.
andrew80718 mjf3814
Posted
Thank you so much, that is incredibly helpful. I really appreciate you taking the time to help.
I think you're right, my body is telling me to take it easier - and I need to take heed!
Incidentally, I play table tennis every week - my favourite sport.
Thank you again.
Best wishes
Andrew
mjf3814 andrew80718
Posted
I played table tennis in various London Leagues from 1971-1999, and for Surrey Veterans. I actually got up to 42 in the English Veterans rankings (once!!). Then once I moved to Devon I played in the Okehampton League until my hip gave out in 2011! I still miss it. And as for football, we were QPR fans and followed them from Carlisle to Southampton (where my cousins lived and were fans!!).
jacob0373 may well be right about yours being a chronic condition, but I hope your flare does die down. As he is also UK and resection being discussed, his clearly is one of the serious complicated cases, so we are showing you both extremes. Best wishes.