Just spent some time at the hospital with a diverticulitis attack, something which I'd never experienced before. I'm back home and taking antibiotics and pain meds, and getting lots of rest (when I can).
This is brand new to me, though, so I thought I'd ask what everyone else's experience has been like.
Couple of questions to things started:
I assume this is steroid-related, as just 1 diverticula was found only last fall. I figure it's a natural if you're immunocompromised.
The pain was incredible. Is that normal?
I actually eat quite well (whole bran, salads, fruits & vegetables, plenty of water), get exercise
How long does it take to go away? I feel much the same as I did over the weekend.
What do I need to look out for? I had some bleeding this morning, which I did not over the weekend. Fever of a 100 is new too.
Thanks!
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winfong
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I cannot answer your questions from experience but I wanted to send my commiserations. It sounds very unpleasant and I expect that we are all vulnerable to it with Pred use.
Hi winfong.Firstly, I don't suffer from diverticulitis myself, and I personally haven't read of anything specifically linking it to PMR, but my sister has suffered from diverticulitis for a long number of years (as did my father) and although they both went on to develop PMR after being diagnosed with diverticulitis, I'm not sure whether that was just coincidence or not.
My sister will be well for long periods but then out of the blue, and for no obvious reason, can be hit with a 'flare up' of her diverticulitis. It's extremely painful and can often involve very unpleasant vomiting, but more usually diarrhoea. She is unable to work during an episode and has to take to her bed and rest.
One of these flare ups can last anything from a week to several weeks at a time, and during these times she feels very uncomfortable with strong, abdominal spasms and pain, bloating and fatigue.
She takes a muscle relaxant and antibiotics if required but frequently it eventually clears up by itself.
It's not an easy condition to manage in as much as eating a high fibre diet definitely aids the transit of food through the gut, but still doesn't necessarily stop it becoming trapped in the little 'pockets' or appendages that are the diverticuli. When this happens and infection sets in, the problematic symptoms can emerge.
She exercises regularly with a daily walk as her specialist recommended, both to help her digestion and her general well-being.
Although, my sister can develop a flare-up for no apparent reason, she also knows that certain foods may make her more predisposed to an attack (eg. anything with seeds, like tomatoes or water melon) and stress is also most definitely a factor.
I know this is all information from my sister's own personal experience but I hope it's helped you understand what may be 'normal' and reassured you that it is possible to find ways to manage diverticulitis and minimise these attacks happening.
Hi how I sympathise, experienced diverticulitis some years ago and as you say the pain is so intense. In my case it was before all this so not linked to any medication but it’s something they checked wasn’t present before starting actemera so I think there’s an issue there. In my own case leafy greens and particularly brassicas seemed to increase the discomfort so perhaps keep a food diary. Take it easy and I hope you are soon feeling better
Hi. I don't have DV but my mate has it badly. As it is a physical issue I don't think it is related to steroids but that is my opinion and not a medical fact. My mate was hospitalised a couple of weeks ago and had to have VERY strong antibiotics to calm it down. They thought it may have burst and A&E recommended an urgent scan which he never got cos they couldn't fit him in!!!! Anyway he avoids things like nuts but does eat tomatoes.
I was thinking the tie-in with PMR/GCA/LVV would be through the steroids - i.e., they suppress the immune system, so the likelihood of getting it (it is, after all, an infection) would be higher
Hi, Sorry to hear about your experience with diverticulitis, my friend used to have terrible bouts of this, he never took pred, also my brother who became very ill with this, he ended up having to have a colostomy for a few months, it’s now been reversed, he also never had any problems before and never taken pred, he still has flares and has to take antibiotics every so often. He also has to have a special diet.
Let’s hope you never get it that bad.
Take care.
Xx
Ps, check out the diet for this disease as it helps control flares.
If you have new onset fever - report it to a medic.
Even if you normally eat a high fibre diet, during a diverticulitis attack it is recommended you need much lower fibre until your gut has healed - I assume you were told that?
I'm never entirely convinced by the claim that steroids cause the diverticulitis though it may do I suppose - but what they will do is mask the inflammation developing in an episode until it is worse than it would have been without and so more damage has been done by the time it is noticed. Any abdominal pain should be taken seriously when you are on pred and have a history of IBS or diverticular disease.
Hi, I read your Post with interest. I received a diagnosis (by letter) of Diverticular Disease a few months ago. It did not say how I should manage this, nor have I been able to speak to my GP, who is seeing urgent cases only. I have been unwell for 6 weeks and have taken painkillers, eaten bland food only and rested with a hot water bottle.I looked online for self-help and found many contradictory views on eating certain foods. Do you know of an Association who would advise on best diet for this condition. I hope to speak this week to my Gastro consultant but do not want to waste his time in discussing a diet, as I have other Gastro issues. From reading various Posts, it seems many sufferers take antibiotics, is this a given that ABs should always be taken? Hoping you can help, thank you.
Diverticular disease can mean diverticulosis or diverticulitis. What did your GP say you had? The first is merely the presence of diverticula; the second is when those diverticula become infected and inflamed. The first is relatively benign; the second can be extremely painful & typically involves a fever. The diet for the first is high-fiber; that for the first is the diet you seem to be on now. Definitely speak to your Gastro about diet - as well as clarifying what you have.
If you have diverticulitis, the only alternative to antibiotics is surgery!
Many thanks for your kind reply. The letter from my Gastro consultant in June 2021 said " .....re your recent CT Scan, shows the presence of diverticular disease (small outpouchings of the colon). There is no evidence of polyps or masses........". That's all. With the Covid pandemic, it has been difficult to get further clarity on this condition from my GP, as there is a backlog of patients with urgent needs. I am hoping to hear from Gastro Team this week, as I have been unwell for several weeks, aches, shivers and upset stomach. Many thanks
I am - no-one at any level of HU is medically qualified though. It is basically patient-led social media. Many of us as expert patients in our own area but that doesn't mean we provide medical advice of that sort.
Don’t want to alarm you and everyone is different, but my experience with diverticulitis is the worst pain ever. I developed it about six years ago, and like you was hospitalised and then sent home with painkillers and antibiotics. I ate healthy foods and was active but my condition worsened as time went by. Again and again I was hospitalised and again sent home with more meds. It got to a stage when I thought my end had come. I went back into hospital and after many scans and tests they had to operate and I had an ileostomy because my bowel had perforated due to the diverticuli blocking. I also had gaul stones, kidney stones removed. I had pancreatitis and I was in a bit of a mess. One doctor told me to not eat so much healthy food, yes, he told me it was too much fibre which was aggravating my gut. I had the op last year and since then Ive been diagnosed with all sorts! Even my bladder is now leaking. I hope none of this happens to you and if at any time your diverticulitis pain flares up, don’t hesitate to call doctor and don’t be fobbed off with the offer of more drugs. Get yourself into the hospital and make sure you get the help you need. Diverticulitis does not get better or go away, it only worsens. I know, and now I’m housebound and have to wear a colostomy bag and a cap dressing on other side. Any of what has happened to me will not necessarily happen to you, so don’t worry. Just look after yourself and listen to your body when it’s calling for help.
Does not get better and only worsens , your words. Whilst I feel for you and all that you have gone through it’s important to stress it’s your personal experience
Thanks for your reply. That really does sound horrible. As I understand it, there are 2 types of diverticulitis, simple (which I'm hoping I have) and complex (which sounds like what you have). Hope things start to turn for the better for you
I hope you won’t suffer too much because it is nasty. But please don’t let it go when you feel ill again. See your doctor and get the help. I wish well for future good health.
Rotten luck, my Mum suffered for over 40 years. She never had any fever, though, so that may not be related? Or she may have been lucky! She also had IBS. Both together gave her problems with diet, you need to study that bit, with help from medics, there’s a lot on the web. They advised a colostomy, in her case, but she refused (quite elderly by then). She bled on quite a few occasions, I think you need to report that to your doctor/consultant to see if they advise any action? There is probably a support group or charity, I would think, to check out. Mum was mainly suffering before the internet came along! She did have one pocket burst & was in hospital when it happened (after a mild stroke..totally unconnected!) Take care, I think it’s the dietary ‘bit’ you need to get sorted in order to have an easier, pain free as possible, life.
A low carb diet could help. I’m a member of DietDoctor (a low carb website) so asked for a friend (only yesterday, coincidentally) if anyone on there with Diverticulitis had found low carb helpful. There were quite a number of positive responses. Google ‘DietDoctor Diverticulitis’ for information, which you may find useful.
Sorry to hear that you are in so much pain. Evidence of diverticulosis was found when I had a CT scan a few months ago and although I have never had it flare my Consultant decided not to give me Actemra because this can cause problems apparently. Just mentioned in case you are taking Actemra. Do hope you feel better very soon.
Hi,I had an attack of Diverticulitis in June and was hospitalised. Not too sure whether it's steroid linked however my osteoporosis. and Diabetes type 2 are both steroid linked.
It took a while to clear up and I'm still struggling with tiredness
Hi. I’ve been on pred and mtx since 2017 for PMR. Had my first attack of diverticulitis spring 2020 and the second in the spring of 2021. Never had a problem before. Like you my diet was healthy. Told to take the symptoms more serious due to being on pred and masking the severity. The pain was excruciating. Round of two different antibiotics x 14 days and an extremely low fibre diet with gradual return to regular diet except can’t seem to tolerate red meat. I empathize with you. Things just keep getting layered on in the so called golden retirement years😏.
Hi, just been diagnosed with Diverticulitis after having a colonoscophy, after being told i had ibs for 2years, i can't tolerate too much fibre, i to used to have a very healthy diet - low fat plenty of fruit and veg, then 3 years ago had pericarditis, on steroids for 8months, antibiotics for 3months, I'm sure that hasn't helped, so now i have bouts of constipation then diarrhea, can go on for days, all dr said was avoid raspberries, seeds and nuts, not a great help! Ruins our lives, can't go out sometimes, need to know where the nearest loo is, very limiting sometimes
Hi. I have had several diverticulitis attacks, starting before I got PMR (so not steroid related), and I have several thoughts for you.
1) I agree with everyone -- if you have a new fever, you ned to check in with your doctor right away. That is not part of the healing process.
2) Mirroring what others have said, I want to be sure you are NOT eating high-fiber foods now. Part of healing for me is always starting with no food/clear liquids only for 24 hours, then a low-residue diet, which is super easy to digest for several days. Search online for low-residue diverticulitis diet. It is so awesome -- white pasta and white bread galore! Can I add a link here? If so, here's a food progression suggested by the Mayo Clinic: mayoclinic.org/healthy-life...
3) A suggestion from my friend who is a long-time GI physician's assistant that has served me well: Once you are healed, consider taking psyllium fiber every day. The way she explained it to me: this fiber, when combined with liquids, creates a sticky gel that makes its way through your intestines and picks up anything possibly getting caught in your diverticula pouches. I have been taking this daily for 8 years (I use the capsules, but there is also a drink mix) since I had my first, worst diverticulitis attack that sent me to the emergency room. A subsequent colonoscopy showed I have lots of pouches in there. I have had no attacks at all until a mild one this year that I managed at home (starting with no food for 24 hours and then working through the diet in the link above.) Hang in there! Hoping you feel better soon and get to the white pasta phase! (Can you tell I love pasta lol).
My niece with cystic fibrosis keeps us amused with high calorie beige menu when in hospital!!! One thing I will say for our local hospital is the food tends not to be particularly beige!
I had diverticulitis in late 2020, which I think precipitated my pmr. Severe pain, vomiting, etc. My doc and 5 er docs kept telling me the scans showed mild. Finally changed hospitals after 5 months of suffering. Surgery next morning. Turns out an abscess had formed and they had to take out a foot of colon. Don’t let them mess around!!
Had diverticulitis 3 times so far. Super painful but I never had bleeding and fever. The emergency doc has said each time those are red flags for returning to hospital. Hope you’re ok and good luck. I’ve had great luck so far taking Metamucil daily and have switched to a very low carb diet (as recommended by almost everyone here, haha). The Metamucil was an order from my gastroenterologist. No magic cures, but sometimes it’s great help.
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in there. I have had no attacks at all until a mild one this year that I managed at home (starting with no food for 24 hours and then working through the diet in the link above.) Hang in there! Hoping you feel better soon and get to the white pasta phase! (Can you tell I love pasta lol).
Worries about the drop but under orders for scan
Rosuvastatin Calcium 20mg for High Cholesterol
PMR diagnosed around March 2019
