Diverticular disease.. what do I do now?

[Willow2117]

Hi, I'm after some advice please.In January I finally went to my Dr about rectal bleeding. I was terrified, and knew I should have gone months ago. I have a history of piles which bleed occasionally, but this bleeding was on a whole different level. Every time I sat on the toilet, I would have a lot of wind which would spray blood over the entire toilet bowl and I would be able to feel blood dripping out of me. I also get lots of cramping and changes in bowel habits.

My Dr did a rectal exam (which was not as terrible as I was expecting, I had never had one before!)

I did a FIT test which came back as greater than 200. I then had a colonoscopy and was told I had diverticular disease. I was given a leaflet about eating more fibre and sent on my way.

Does this mean I have to put up with the bleeding? Is this now something I will always have? Or will eating more fibre stop the bleeding?

I don't feel I have been given much advice and I hope some of you kind people who may be having the same problems can share some insights with me.

J x

[Buvin]

I have had diverticulitis for about 4 years now. I never had the bleeding so I can't help you with that. I manage mine by making sure I have plenty of fibre in my diet and if I need to I will take laxative ( fybrogel ) so I don't get constipated. Sometimes I get a flare up which gives me pain but not so often now. There is plenty of information if you google it. Good luck.

[suzie44na]

Hi, I have just had the same issue. I had bleeding, pus and mucus not nice at all. All my tests came back abnormal, so I was sent for colonoscopy within two weeks. This was two weeks ago, still awaiting my biopsy results, but it is looking like I have colitis or Crohn’s disease going off what he put on his report. Hoping they see no cancer when I get my biopsy results. They don’t seem to tell you much about the test at the time. I had a polyp removed also, had these before, think they are common. So I too are hoping for more help with this problem. My own doctor gave me antibiotics good job I think. Maybe they will give you some if you have bleeding to clear things up, ask your own doctor. Wishing you all the best.

Suzie

[Willow2117 in reply to suzie44na]

Thank you Suzie. I hope your results are good. Luckily I had no polyps or signs of cancer. I just feel like they told me what it is, but haven't given any advice on how to cope. Maybe i need to speak to my Dr again. X

[Gardeningbuff]

Hi . This isn’t really going to solve your problems, .by all means increase your fibre , but I was a lifelong vegetarian and always ate plenty of fibre but I still ended up with severe diverticulitis. It’s a very unknown disease at this stage. I have noticed in the UK diverticulitis is taking very lightly. It’s a serious disease. I don’t want to panic you but I ended up having a bowel resection because I had a nasty infection and I had an iliostomy bag for three months. The specialist I was seeing while I was having the attacks had no idea what was going on. It was the surgeon that I saw privately here in Adelaide South Australia that diagnosed me with an abscess that I had for five months After the infection that put me in the hospital. It wasn’t followed up.. I would seek more help with this problem ,sorry I don’t want to panic you but that was my experience. Please ask any questions, I don’t mind answering.

[Willow2117 in reply to Gardeningbuff]

Thank you, don't worry, you haven't panicked me. I agree, it doesn't seem to be taken seriously here. From the bit of research I have done, they seem to say eat lots of fibre to stop diverticular disease from forming, but once you have it, there doesn't seem to be much advice on chopping with it day by day. For instance, the bleeding, they said that was why I was bleeding, but no advice on how to stop it. Does this mean I just have to put up with it. I guess I need to go back to my Dr. X

[Gardeningbuff]

yes I think you need to be pro active. I have no bleeding but I had pain and sickness for years and every time I went to the gastroenterologist that was treating me, my husband would say he’s not doing anything at all to help you and doesn’t seem to know what’s going on. And that all culminated in the massive infection I had that caused the abscess. Once it was diagnosed I had a wonderful surgeon who did my bowel resection etc. Three surgeries altogether. I still have issues I still have discomfort in my bladder which was affected as well. And as I said I always say lots of fibre because I’m a vegetarian and have been for 50 years(I’m 67) I was very fit and healthy and a normal weight. I agree with you once you have it fibre may help but it doesn’t go away. So I would go back to a good doctor and perhaps get more information. Here in Australia they take it quite seriously, I am lucky enough to have private health care. That doesn’t mean we’re well off ,We’re not, but it’s affordable here , it just means a bit more money out of our pension and superannuation but I wouldn’t be without it now. And any time you think you have an infection you go straight to the doctor because you need strong antibiotics. Have you had antibiotics yet for? Because if you’ve been bleeding I would think you would need them. But I’m not a doctor this is just my experience. It’s a nasty thing to have.

[West987]

Hi, I have a different set of problems for which I am getting a colonoscopy this Saturday but just wanted to say that I feel for your situation and it must be very scary what you’re experiencing. My only advice would be to be proactive chasing up your health status. If you feel you haven’t understood something feel free to ask ‘ok, can you explain to me a little more about that?’ , ‘What does that mean?’, ‘I see, so what are the next steps?’ Feel free to take notes while they are talking and you can also request a copy of your medical file on the issue. It is sad that we have to do investigative work ourselves but I am convinced that often time doctors do not have enough time, resources or skills to address issues holistically and in detail. For example when I told them about an episode that escalated and produced blood after a bowel movement, they checked for anemia to support the claim that I did not suffer a great blood loss, however to have lost such volume of blood after a single bm would have been life threatening, so the message taken was ‘come back when you are gravely ill. Similarly, they were not especially keen to help me on the fact that I had a nasty painful diarrhoea for 2 months, which has now set in soft yellow stool and bottom soreness and I was constantly told that ‘colour’ is not important.. Never the less I had to keep pushing and some action is taking place but if my Clnsp comes clean I will continue pushing until I find out what is happening to my body because they don’t seem to understand how deeply the quality of our lives is been impacted..

Please remember to advocate for yourself and wish you best of luck and great results in resolving your issue x

[Nat107]

hi Willow, hope you get the right help very soon .

Iv had ibs for years, lots of scopes to look at my bowel as had occasional blood in pop and wiping it, had pikes inside very high up once that couldn’t be felt that were elastic banded to drop off but last week was a whole new ball game. Started with stomach pain resulting in goi g loo and bad loss of diarrhoea somewhat like you get from the scope prep, pain was so bad I nearly passed out, everytime I went for pee after I was just spraying with blood from my bowel involuntary like you experienced, early hours I passed a huge blood clot dark red & bright red and was in so much pain, next move my felt like ribbons of blood forming a mass of blood in toilet bowl, the pain and blood loss continued until Sunday afternoon resulting me going to a & e on Saturday morning as I was in so much pain and really scared to be honest, done a bacteria test in sample as trying to say it was a stomach virus that was negative. Sending out a fit test without a referral which I’m shocked at as Iv always been straight away referred for any blood loss but not this time when it’s been more than Iv ever lost before. Could I ask if you list a lot of blood and how long it continued for, did you have any clots, I only had the one which was nearly the size of the toilet bowl in the water below