Severe Diverticular Disease

[Nanaedake]

I'm not sure if this is the right place to post this, if not please redirect me. Anyone had experience with diverticular disease?

[edwangy]

Yes, I suffer with it. Pain and constipation most days

[Nanaedake in reply to edwangy]

What do you do to improve things and have you had to take antibiotics?

[edwangy in reply to Nanaedake]

I haven't got diverticulitis (infection) at the moment so don't need antibiotics. Diverticular disease is painful in itself and has caused a thickening of sigmoid colon, this causes constipation and pain. I have tried everything from GP, paracetamol,amitryptiline, mirtazazapine,pregablin,all supposed to help with pain but just cause worse constipation. I was even given tramadol which made me vomit and didn't help pain. At the moment I am taking nefopam from GP which sometimes helps,but doesn't seem to when pain is severe. I've had to get some sleeping pills from GP because this pain is continuous and keeps me awake at night, I'm worried what will happen when they run out as she won't prescribe any more. Other than that, I don't know what else there is, I'm waiting to see the consultant and see if he has any suggestions as CT showed the thickening of colon an sever diverticur disease. The only thing I can think of is balloon streching of the colon or last resort, colon resection which I obviously want to avoid. Please tell me your experiences with the disease

[Nanaedake in reply to edwangy]

Yes, same severe diverticular disease of sigmoid colon. But pain has been on right side and up under ribs as well as general pelvic and lower back pain. That's probably because diverticular are on right side and transverse colon too. It's very painful. I can only take paracetamol. I'd like to know what has helped others. It's made life miserable for last 7 years but only just got diagnosed so have had to put up with the pain as no doctor could diagnose it. Ended up in hospital with acute diverticulitis.

[Krn210]

Hi there! I too have diverticular disease. Mine is in the sigmoid colon. I have had 3 flares of diverticulitis in the past 4 years. I still get pain. I have found that taking a probiotic daily as well as a fiber supplement and lots of water help keep things moving more regularly and consistently. Prior to this I would have days where I went 7+ times and then wouldn’t go for a couple days. It’s frustrating. I recently read about a supplement called Butyrate that sounds like it could be promising. I have yet to try it. For the most part I stick to the same diet and don’t vary much from it. I also exercise most days of the week. I wish I could be of more help. I have been researching and researching trying to find something to help. The Gastroenterologist said if I have any more flares they want to do a colon resection and I am hoping to avoid that as best I can. If I find anything else that works I will let you know. 🙂

[Nanaedake in reply to Krn210]

What happens when you have a flare-up? How does it start and how do you know when to get to the doctor? Have you seen a dietitian and if so, did you find it helpful?

[Krn210 in reply to Nanaedake]

When having a flare there is severe pain. It feels a lot like labor pains. I usually cannot go to the bathroom and if I do, it isn’t much. A fever develops over this time too. The only prior indicators I have noticed are consistency changes and more frequent upset stomach episodes

[Nanaedake in reply to Krn210]

Do you go to the doctor before severe pain develops?

I told the doctor it was like labour pains and she said it couldn't be. But that's what it feels like to me - like severe involuntary contractions so it's interesting you have described it in the same way.

[Krn210 in reply to Nanaedake]

When that pain settles in is when I get a hold of the doctor. The last one I was up all night with the pain wrapping around my hips.

[Nanaedake in reply to Krn210]

Any reason why you don't go to the doctor when you notice consistency changes and before you get severe pain?

[Krn210 in reply to Nanaedake]

Because I don’t know that she would do anything. I was reaching out and kept being told “watch for more pain and fevers”

[Nanaedake in reply to Krn210]

That's not very helpful is it? If you got antibiotics right away you might avoid a lot of pain I would have thought. Do you get blood tests to check inflamation levels when you suspect a flair up? That could help to guide treatment couldn't it? I'm only asking the questions because I'm thinking about how I'll know when to go to the doctor and what I should expect or ask them to do.

[Krn210 in reply to Nanaedake]

I agree with what you said. I think they try to stick strictly to the no antibiotics unless absolutely necessary. My first flare of it I waited too long (a week later) and my blood showed no signs of infection. The second time I went in as soon as the pain settled in. They did a CBC and a c-reactive protein. Those both came back showing infection/inflammation so I was sent for a CT scan. The 3rd episode she prescribed the meds without any testing. I definitely feel off when it happens so if you’re feeling unsure or just not right I’d at least ask for a CBC.

[Nanaedake in reply to Krn210]

So, did you subsequently have a colonoscopy after being sent for CT scan? Or did the CT scan confirm the extent of the disease? It sounds like now you've had disease confirmed the doctor is more ready to prescribe antibiotics right away? I'm hoping they won't make me wait.

[Krn210 in reply to Nanaedake]

Yes, since it has been confirmed via CT scan she trusts that I know what I am talking about. I am actually having my first colonoscopy this coming Monday. They want to see exactly where they are located. They said that if I keep having recurrent flares that they would like me to consider surgery as it can eventually lead to abscesses and perforation. I am hoping that it all looks ok and that I don’t have to think about that any time soon. However; I also know that I am forever at an increased risk for future flares. So only time will tell I suppose. I hope that you get to feeling better. If I can be of any more help, let me know.

[Nanaedake in reply to Krn210]

Thank you for explaining, it's really helpful. I had a colonoscopy too.

[Krn210 in reply to Nanaedake]

I am not looking forward to the colonoscopy at all…ugh

[Nanaedake in reply to Krn210]

It was unpleasant. I guess you just have to think that it might be useful to guide treatment in future.

If you have some anaesthesia it might make you feel odd for a couple days afterwards. I don't think the stuff you have to drink helps either and it put me off food for a while. I felt dreadful for a few days afterwards. So just be prepared for that.

Noone told me how I might feel after so I wasn't prepared.

[Krn210 in reply to Nanaedake]

Those are all the points that I have been anxious about. Well that and the dreaded prep. This is a different prep than I was given the first time. I wasn’t able to keep any of it down so had to reschedule. 🙄

[Nanaedake in reply to Krn210]

I found it helped to drink elderflower cordial after each gulp of the other stuff. Also better to glug it down than take little sips. If it takes too long to drink I found it started to make me feel sick.

[gillyflower7]

Hi, just found your posts. Hope you have had your procedure and that it was ok. Your advice about the bowel prep is good- I drink it quickly through a straw so you don't taste it too much, and follow it up with some lemonade. Divide the doses up to make sure you get through a proportion each 30 mins to avoid feeling so sick. Oh, and some vaseline around your anus to avoid soreness!