First Acute Diverticulitis - Advice please
Posted , 10 users are following.
Hi all, I am 46 years old and was released from Hospital 3 days ago with Acute uncomplicated Diverticulitis. I was on IV Antibiotics for 2 days and now on tablets for 7 days. I was admitted to hospital 12/2 following feeling shivers and cold, slight fever 37.6c, tenderness in left flank and general discomfort throughout stomach particularly when twisting or moving. Bowel movements have also not been great and lot's of ongoing gas. I also has tachycardia on admission. heart rate sitting on about 110bpm while laying down. I stayed for 2 days, EKG and bloods done. All showed OK except for CRP and white bloods slightly elevated. Was discharged.
We thought I had kidney issues because I had been exercising a lot to lose weight and possibly I was dehydrated because I was sweating a lot. I went to Dr on 14/2 and had CT scan with contrast which showed 3 diverticula with abdominal wall thickening coupled with fat stranding consistent with diverticulitis. I got an urgent call from the radiologist to go back to my Dr who suggested going to ER.
Right now am at home recovering. I generally feel better but from hour to hour I might feel some slight discomfort in the suspect areas. Left flank pain has gone but about 5cm below below button sometimes I feel a twisted bowel type feeling and upper right below ribs I feel a funny sensation which I'd give a 1/10 for pain.
What did I feel leading up to this
- For the last ~2 years my stools had not been consistent. Morning usually firmer but during the day I could have 1 or 2 diarrhoea episodes
- I have had lots of flatulence over the last 2 years
-around August 2018 I felt nagging pain about 3/10 in my right abdo below ribs. It lasted a few weeks. I put this down to me being overweight
- In November 2018 I was diagnosed with UTI. I took antibiotics and while pain when peeing went away I was still left with disomfort below belly button and across pelvic area and put this down to an inguinal hernia I have unrepaired
- Progressively this stomach issue got worse in December and early January I started taking anti inflammatory tablets which helped but now I know were bad.
The ER would like to do a colonoscopy to rule out something bad, I guess they are referring to colon cancer because the surgeon said Diverticulitis can mimic this. I have since read colonoscopy is standard after a first case of acute diverticulitis and I am assuming if I had very bad colon cancer it would have shown on the CT scan with contrast. But I am scared to death. Surgeon is waiting about 6 weeks to let colon heel
Diet Post Hospital
I was exercising a lot prior to this issue. 2-3 hours per day and lost about 12 kg. Since hospital I have lost a lot more weight and my wife has commented my stomach looks so much thinner. I am guessing the bloating has gone away and possibly I was bloated for 2 years? I was only on liquids but now I am eating Mash plus probiotics. My calorie intake is insufficient but with the niggly feeling I have which comes and goes in my lower belly button and right flank under ribs I am petrified to eat.
Keen on views if it is possible that my change in normal bowel movements and flatulence for 2 years could have been down to an inflammation which was left untreated and hence progress to an infection vs same symptoms applying to colon cancer.
Any other advice? How long before these niggly feelings go away? This is doing the brain in of my wife and I. Diverticuli, Diverticular Disease, Diverticulosis, Diverticulitis.!!!Nothing on the net refers to these symptoms I have been experiencing (for anything other than Diverticulitis) or which I read on this forum from the vast majority of people that references ongoing symptoms like we are experiencing. Maybe my diverticulosis was causing all these issues
A guy in the ER told me he had a bad case of diverticulitis and was admitted to hospital but for 15 years he has since had nothing.
Thanks again for listening
0 likes, 59 replies
yevetanderson danny_1989
Posted
Hi Danny,
It sounds almost like my story.. I have had three assumed UTIs and found out it wasn’t a UTI at all but given so many Antibiotics but it did more damage than good. . Now they want me to have an endoscopy and colonostopy in And out of the hospital on a regular basis with the same symptoms. I personally am scared to death of the two procedures they want me to take
j_09263 yevetanderson
Posted
I have had them both and neither is bad and I was wide awake for both. Most people are drowsy to asleep. Don't worry they are easy tests.
brannie42 danny_1989
Posted
Hi Danny,
I'm sorry you have been going through such a bad spell.
This sounds very much like diverticulitis to me. I went for years with niggly pains and twinges and eventually episodes of abdominal pains and cramping. I began to notice blood and mucus in stool 5 years ago. The cramps and pain would last up to 24 hours and then go away and I would feel better for a few weeks until they came back again.
My last flare was 8 months ago and it took a good 6 weeks for me to feel better.
I often get niggles and still see some blood from time to time but a diet high in soluble fibre and low in insoluble fibre has worked for me. I have not had the painful cramps return.
A colonoscopy is done to check the colon after the inflammation has gone. Please don't be scared, it will give you reassurance and check on the degree of diverticulosis and narrowing.
Guest danny_1989
Posted
Hi Danny
I've read your post and all the replies which are spot on, in particular j_09263. What you describe is totally typical of Diverticular Disease (DD), which is the name covering the various states. A diverticulum (plural diverticula) is a pouch in your colon wall. If you have pouches it is called Diverticulosis. If the pouches become inflamed and/or infected it is Diverticulitis. The bowel can become scarred, narrowed and twisted through the disease as well leading to an overall description Diverticular Disease. I hope that sorts out all the different terms.
UTI and apparent UTI go hand in hand with this disease. I've never been given a medical reason for it, but I did wonder if the inflammation causes pressure on the bladder and hence the urgency. I just know that when I am recovering from a flare of Diverticulitis, I can be running every 45 minutes or so. As I recover from the flare the need to urinate also decreases. But NSAID's are a strict no-no. They can inflame the stomach and insides and can cause bleeding. So very bad for an already inflamed colon. I take paracetemol only for the pain (I think the USA equivalent is Tylenol, but best check).
Changes in toiletting - constipation and diarrhoea - are also common. I am prescribed a daily dose of Fybogel (Metamucil in USA) which bulks and softens stools and makes them easier to pass. If your system is cleared out regularly it does help to reduce the chance of recurring infection. There are other products mentioned in these posts which are alternatives if one does not suit.
Many of us went undiagnosed correctly for years - I was told it was IBS - and I was only diagnosed properly with first a colonoscopy then a barium enema after I started bleeding. Like you I was terrified it was bowel cancer, but that is a totally normal first thought. The CT scan would have picked up obvious signs of cancer, and the colonoscopy will confirm your diagnosis (which like others I think will very likely be DD only). It will also deal with any polyps you may have. The doctors do have to wait for the acute stage of Diverticulitis to calm down before they can perform a colonoscopy, to avoid the possibility of a perforation. Since then I have had a further colonoscopy and a CT scan 15 years later, which monitored the progress of the disease. I have severe narrowing, twisting and multiple diverticula throughout the colon.
Now the good news. I was diagnosed 18 years ago, and after the first attack, I had 6 clear years until the 2nd and then a further 4 years clear. But the disease is with you for life and does progress. You do have to alter your lifestyle and diet and find out what foods affect you. Everyone is different - some people find many things affect them, and some only a few. In my case it is gluten and fat, so I follow a low fat gluten free diet. If I slip up I get niggles but I now know why.
The majority of people only ever have one attack, but others do have multiple attacks particularly those with other medical issues, or who have gone on to develop one of the (rare) complications. Most people on the forum fall in the latter group, so you do not see posts from people who have an attack, recover and do not return to the group. So you need to remember this when reading the posts. Recovery from the pain does takes weeks, if not months, with the niggles slowly decreasing. So you must remember that for most people things do get better, although it seems to take forever. I had 3 quick flares in August 2016, and the pain was daily for almost a year. It slowly subsided to intermittent by January 2018 and I have been pain free since June 2018.
Fear of eating is very common and many people do lose a lot of weight. If you are overweight that will actually help, but it is important to try and get essential nutrients on board. I know some people would disagree with me, but I did take meal replacement fortified drinks to ensure I got the essentials. My father was prescribed them when he was in hospital, and a friend has recently been advised by the hospital dietician to drink Complan to supplement his diet. I found that if the pain was just niggles, not the severe pain of a flare, I got used to them and lost the fear of eating. But the meals should be small, regular and foods you know you are OK with. It is important not to overload your stomach and will help get you down to a healthy weight. Exercise is also good, but be careful not to overdo the tummy bits. I did a lot of power walking.
As for the pain on your right hand side, I suggest you pursue that separately with your doctor, as it could be a sign of gallstones. I don't think a CT scan for DD would look in the area of the gallbladder so may have been overlooked. But you have not mentioned your ethnic background - people of Oriental descent for some reason do have diverticular pain on the right hand side rather than the left.
This is a difficult time for you and your family, and it will take time to adjust and settle. You have not mentioned that your work has been affected, so that is good and I hope will continue. But for the vast majority of people, settle you will. You will hopefully adapt your lifestyle and just get on with things. Best wishes
danny_1989 Guest
Posted
thankyou so much for your reply. it was a very interesting read. i have been of work for 1 week but going back monday. the niggles should not keep me away. 70% of my issue right now is psychological including regrets of why i waited so long to deal with my symptoms including my weight. i'm also weak after hospital. thanks again for your reply
Guest danny_1989
Posted
Hopefully you will be able to manage just fine, as long as work is not too physical. I have read horror stories of people in the USA who have lost their jobs and pensions because they cannot get back to work in the ridiculously short amount of sick leave time they are given. Here in the UK we seem to be much better protected. There are procedures to follow, and pensions are frozen until retirement age.
You will feel weak after hospital, and also from the side effects of the drugs - they normally take time to work their way out of your system. But you are not alone - there are many thousands of us who have been through exactly the same, although most people have never heard of DD. Regarding the colonoscopy, it's not the nicest of procedures, but for many, the worst bit is the prep. You will not be able to work when taking it. In fact you won't be able to get off the toilet! There are plenty of posts offering advice on how to manage - I found plenty of wet wipes, cream, plenty of nice soft towels, music and my Kindle. You are lucky in the USA as you are normally put out. Here in the UK they don't and they've cut down the sedation to very low levels. I look forward to the day when it is all done by swallowing a camera pill and retrieving it at the other end!
j_09263 Guest
Posted
Great post .I would just like to add for colonoscopy prep I read stop meat and cheese 2 days before you start the prep. I did this and my prep was easy.
danny_1989
Posted
Thanks everyone for your comments and help. Just an update
Once again thanks for your support. Makes me feel better
danny_1989
Posted
update.
pain is probably 2/10 and has improved.
my stool was looking ok with mashed potato daily.. i ate chicken soup today. just the water from boiled thigh fillets with nothing extra added. could the fat content in the soup (i could see the oil residue on the surface of the soup) have caused me diarrhoea about 3 hours after drinking the soup?
Guest danny_1989
Posted
The diarrhoea could be a side effect of the medication, or it could be fat. When I cook chicken, I add a chopped carrot and celery. Then I drain the liquor and put it in the fridge or freezer. The fat rises to the top and sets. I then scoop it off and just use what remains to make soup. You could just use the set liquid, or boil up other veggies like potatoes, squash for example in it, and puree the lot.
danny_1989
Posted
Thanks. Given I have not had this diarrhoea all week on antibiotics and this was my last dose yesterday I'm assuming my 2 back to back episodes of diarrhoea were from the fat in the soup. Very strange my body rejected fat like this
Guest danny_1989
Posted
Many people find that they can no longer tolerate certain foods. For me it is products containing gluten and full fat. I now have very low or zero fat products only, including skimmed (0%) milk, fat free cottage cheese, reduced fat mature cheese, and milk substitutes like almond, soya, rice milk with my cereals. I trim all the fat off before cooking, or skim it off the cooking liquid. I bake, steam, boil or pot (water) roast - no frying or roasting in fat. The fats I do have are those naturally occurring in fish like salmon, mackerel, plus I do take an Omega 3 supplement daily.
You are very early in the recovery stage and as your pain is subsiding daily, I am hopeful you will be one of the people who do end up pain free, just needing to watch what they eat. For the first time in many months I woke up with a niggle this morning, plus the runs, but I realised it was because I ate something containing gluten whilst I was out yesterday. So easy to do.
danny_1989 Guest
Posted
thanks felinia,
I must say I am so freaked out about the potential for having colon cancer. I am a nervous wreck. My bowel movement this morning was broken up string type stool. I know I have only eaten mashed potatoes but the issue which is in my brain is I have had this type of intermittent normal stool one morning then diarrhoea or stringy stool another day or in the evening for nearly 2 years. I don't believe I am constipated because the food I am eating is coming out daily like clock work. It is just that it comes out in an not ideal way.
I thought when the infection went down for the Diverticulitis things should have started to improve. One of the major call outs I read for colon cancer is a change in bowel habits. I have had this for more than 1 year. As mentioned sometimes formed and sometimes not with a lot and I mean a lot of flatulence. The good news is the flatulence has really improved a lot since I have taken the antibiotics and reduced my diet.
There have been times where my stool was reasonably formed but other times like I have it.
All so scary.
glenda_82112 danny_1989
Posted
Awww Danny hang in there. I'm pretty sure that thought crosses everyone's minds . I was the same way because colon cancer does run in my family. Believe me, it is one of the first diseases the doctors check for.
danny_1989 glenda_82112
Posted
Thanks
has anyone had ongoing loose stools eg, mushy, flaky, pencil like mixed in with normal stools for say 1 year plus with a lot of gas? I'm talking about to 2 bowel movements a day.
Guest danny_1989
Posted
I think if your doctor had been concerned about colon cancer, a lot more tests would have already been done. Once you get the colonoscopy you will have the definitive answer, but all your CT scan showed was diverticula. Regarding your bowel movement, if all you are putting in is mashed potato and liquid, you are not going to have normal stools coming out. And if your diet was not brilliant before, that too would have affected your "output". It is so hard at the beginning of this disease to accept how long it takes to get back to normal. The antibiotics will have stripped out all the good bacteria along with the bad and it takes time to build up again. Probiotics will help. I take Fybogel to bulk my stools but they go make me go more often, 2 - 6 times a day sometimes. But I have been like that for years now and I don't have cancer. Please try and stay positive.
brannie42 danny_1989
Posted
Absolutely YES!
brannie42 danny_1989
Posted
Danny, this sounds very normal to me!Got the mug and the T-shirt! Diverticulosis can also cause a change in stool consistancy and frequency without even having a flare up of diverticulitis. You will have the colonoscopy soon and it will put all these fears to rest.
I have had so much anxiety over the years due to this disease but colonoscopies have shown that it is just that...diverticulosis/diverticulitis. There have been times that I was convinced I had bowel cancer as I felt so poorly and passing blood and mucus periodically.
I hope you are feeling better but try not to let these fears take over your day. Know that you are on the recovery road!
x
danny_1989 brannie42
Posted
Thanks so much for the reassurance. When I see pencil type stool or Diarrhoea, makes me so anxious.
My pain is currently a 1/10 but bowels.....welll I ate steamed fish, banana, some gluten free corn flakes and plain steamed potato and now appear constipated and cannot go. I've gone from one extreme to another.
I wasn't like this 2 weeks ago before I started this fluid diet, antibiotics etc. Yes my bowel movements were not great...... flaky etc. but only 1 or 2 per day. I have never had constipation so this is a first. I tried glycerin suppository last night that we use for my baby and it did nothing. I've lost 10 pounds since 14 Jan.
By the way I did notice when I tried to exercise on a cross trainer after about 20mins I felt an increased feeling of discomfort below my belly button. I read on this forum in a few places that some exercises can cause this
danny_1989 brannie42
Posted
Also what can I take for the constipation. I feel pressure near rectum
brannie42 danny_1989
Posted
You might like to try psyllium husk. It works for both loose and constipation. I don't know where you are in the world but it goes under various names. Here in the UK it is called Fybogel but it also comes in a capsule form which works for me. It's called Metamucil in the US.
There are similar things you could try if you find that psyllium doesn't suit you. You will need to start with a low dose and gradually increase it over a few weeks.
x