Still exhausted after my 1st Diverticulitis attack :(

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Hi all

I had my very first Diverticulitis attack last week, which culminated in me spending 2 days in the hospital on IV antibiotics.  Not an unusual story, I know smile   I'm now on a 10 day oral antibiotic regime and liquids (smoothies, soups, etc)    I can't find any information on is how long will this exhaustion last.  I'm so dead tired I can't stand it!!

Is a week normal for still being this tired?  Longer?

TIA

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  • Posted

    Hi

    I'm sorry to tell you, but it takes a long time to get over an attack.  The medication is very strong and will knock the stuffing out of you whilst you take it, plus a couple of weeks after.  It is common to take 4 - 6 weeks where you have exhaustion, depression, altered bowel movements, intermittent pain, bloating.  So what you are experiencing is totally normal.  If it was a bad attack, or you have severe Diverticular Disease it can take months.

    You are on the right liquid regime.  You should then move on to low residue food, and only slowly reintroduce soluble fibre back into your diet.  Diverticular Disease is with you for life and will require you to make lifestyle and dietary changes to manage it.  You may find that certain foods will trigger symptoms, so you should avoid them.  The doctors will tell you to follow a normal healthy diet with soluble fibre, but you should have small meals, well cooked and thoroughly chewed.  You should also look to ensure your bowels are emptied regularly and easily.  Many of us take a stool softener like Metamucil once the medication is finished (there are different ones available - I take Fybogel).  You should also be taking a probiotic to replace the good bacteria that the medications destroys along with the bad.

    There is loads of information on this forum.  Best wishes.

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  • Edited

    Hi Dena,  I am a 54 yr old healthy woman and this hit me out of no where on Feb. 2, 2018.  I had a CT scan and blood work which confirmed Diverticulitis.  I was put on the two standard antibiotics for 10 days.  I felt good for one day.  Then the same pain hit again in the lower abdomen with a low fever. The first attack I was put on soft foods.  When the pain hit again my Dr. called a specialist who said for me to do full liquid diet and 14 days of the same two antibiotics.  I felt horrible during those weeks.  I found this forum and the advice was so good. Bless you all who answered the questions of others who were confused and suffering.  I was a silent reader who gained a lot of information from those on this forum. I decided to do a full liquid diet based on what those on here had said.  I did it for four days until I could not stand the thought of another drop of chicken broth.  But it really did help.  A week ago I saw the specialist who had me do another CT scan.  The 2nd scan was 5 weeks from the first scan.  It showed the diverticulitis was clearing up but still some infection.  All this is to say to you that it seems to take a really long time to get well.  It has now been 5 and a half weeks for me.  I am a school teacher and I have missed nearly 3 weeks of school because I felt so bad.  So yes it is normal to be very tired and in pain.  I have honestly been nearly in despair I have felt so bad day after day without any improvement at all.  I think typically we get sick, we get medicine, we get better, we get well.  We are used to that pattern but with this particular thing that does not seem to be the case.  Keep reading all the posts on this site.  I read so much more information than I had help with from either of my doctors.  Many people have commented at the lack of information from the medical profession on this disease.  I definitely agree.  I am still having trouble and I am not 100% better yet.  One week ago the Dr. said how much better are you?  I said 25%.  A week later now I could say 60%.  Maybe, just maybe, in another week I may could say 75% and finally 100%.  I know for sure based on what others have said there will be foods I never eat again.  It is not worth it to risk it.  No peanuts or any nuts, no seeds, no red meat, no corn.  I am okay with that.  But I do want my pizza back!  I can even give up the pepperoni!  biggrin

    Hang in there!  There are many of us in this club.  Hopefully we will all be better and get our life back!

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    • Posted

      Hi Georgie, just wondering how your doing..I had my 2nd diver flareup in 16 mos 8 weeks ago in Feb. Exp. Same reaction to meds but slowly regained energy and went about normal activity but continued to have mild spasms/discomfort esp before needing to use restroom, all the while using stool softener and probiotics. 2 weeks ago I rtn'd to GI and explained my discomfort at which time he suggested another course of antibiotics to which I resisted due to horrible way my body and mind reacted to them and the fact I could manage it with diet, probiotics and stool softener. Late last week had another ct-scan that confirmed small area of infection and now 4 days into 2nd course of antibiotics..

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    • Edited

      Hi,

      I am much better in how I feel.  It has taken several weeks to get better.  I hate to hear you are on another round of meds.  I think the hard thing is knowing what to eat.  I am not eating much fiber.  I am taking a probiotic- 20 billion.  I am not doing a stool softener and wondering if I should be.  I am roasting my vegetables which I find is delicious.  I hope that is the right thing to do.  In fact I may post that as a question on the forum.  Now that I am past the initial attack and beyond the soft food stage I am fearful as to what to eat next for fear of another attack.  I am sure you know what I mean!  On the bright side I am walking every single day, and drinking tons of water and have given up soft drinks.  I am trying to look at the bright side of things- oh yes- no fast food. But sadly no fried food, no Mexican food, no Italian food....can you say " BORING"!   Oh and no red meat.  Chicken and turkey and then turkey and chicken.

      Take care and hope you are much better!  At least spring is coming at last.  It has been a long winter battling this.

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    • Posted

      So glad to hear your doing well and being active.. I know what you mean about the food choices being a bore but the roasted veggies sounds like a good choice if prepared properly.

      Funny thing about this disease, food choice for recoveries sake seems pretty clear but what may actually cause onset of flare-up not as easily understood..studies show nuts/seeds not so much the culprit as they were initially believed to be but I still caution against them as I know almonds were a large portion of my diet before last flare. I guess the way you prepare your food, chew it and portion size all play into the equation of healthy maintenance as well as proper hydration, probiotics or naturally fermented foods and activity all as well. Thanks for your response, be well and may God Bless.

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    • Posted

      Roasted veg are good, and tasty as you say!  I too avoid fatty and spicy food, but I can eat pasta and rice with sauces, so wondered what you meant by Italian food - I do avoid pizza, but did you know if you get a chicken breast and bash it flat, you can use that as a base, and put your toppings on that - some strained tomato sauce, mushrooms, roasted skinned de-seeded veggies, spinach, grated mozzarella.  Is this giving you ideas?  You will slowly regain your confidence as you continue to improve - read Susan95516 posts as she had exactly the same issues last year.  She started small trying the odd mouthful of things - I think her breakthrough moment was 2 chicken nuggets!  Take care not to become complacent as that is when you get a flare - the voice of bitter experience and taste of Ben and Jerry's ice cream (sob, sob).

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    • Posted

      Why no Ben & Jerry's ice cream? I am so glad I found this site because reading the forms from everyone who is dealing with this helps me more than what instructions I got from my doctor. I was on a bland diet for 3 days and got so sick of it I finally ate some biscuits and gravy and hash browns. That was three days ago and so far so good. But I'm scared to death about what I eat and don't know how to plan a diet around diverticulitis. Most of the stuff I read says that a high fiber diet helps reduce chances of getting another attack but has anybody had experience with that and how soon did you introduce the fiber after your attack? Any information would be helpful. Thanks.

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    • Edited

      Hi, thought I would reply about the stool softener. I have been instructed by several trusted docs to take benefiber every day to keep regular. There are a lot of foods that really are not good for us; the typical western diet is extremely bad for us; I have a good overall diet, but found something called the FODMAP diet. It is a diet that is quite restrictive in some ways, but cuts way down on the gas and bloating. Anyway, thought I would mention it. I am still in the beginning stages of reading about it, and am careful to see what site I am on while doing it. I totally understand how scared you are about eating ANYTHING!!! Hope you are well!

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  • Edited

    Thanks you two for your replies -- it does help to hear from others that are in the same predicament.  It sooo hard!  I have great moments where I think "oh my god, I'm healing super fast" and then the next day I'll be down and out LOL

    I go to my my gastraentologist tomorrow and he'll review my CAT scan  (had a colonoscopy not quite a year ago and they did see diverticuli but as of that time I hadn't had an attack of any kind.  It'll be interesting to see what he has to say

    To add to all the confusion,   I swear every Dr while I was in the hospital had something different to say, and then so did my own DR.   

    Your next attack will result in:

    surgery and colostomy

    no surgery

    maybe surgery

    we'll track your next attacks.....

    Its like holy hell, which one is it?

    Then the diet;

    Liquid diet

    Soft diet

    Don't worry about your diet

    No seeds

    Seeds are ok

    On and on and on....

    This forum has helped decipher quite a bit but once in awhile I still need reassurance in the form of posting questions that have already been answered smile

    Thank you again

     

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    • Posted

      Hi

      Regarding surgery, in the USA some surgeons are very quick to want to start chopping.  In the UK surgery is only done in emergencies or for very severe Diverticular Disease which seriously impacts the quality of life.  Otherwise it is managed with diet, lifestyle changes and medication when necessary (including daily stool softeners).  I've managed quite successfully on diet and daily Fybogel since 2001, and had just 3 attacks between 2001 and 2016. 

      If this is your first attack and you are recovering I would strongly advise against surgery at this time.  It is not the "magic cure" as DD can recur elsewhere or lead to other complications like a hernia or adhesions.  Don't be conned by the "preventative" speech unless they can prove you have very severe DD and are at imminent risk.  Seek further opinions if necessary.  But for some it has been essential and very successful, so never say never - it depends on individual circumstances. 

      As for diet -  at the first sign of twinges liquid only for 48 hours to see if it settles.  It normally does the trick.  If it develops into an attack, liquid only until the antibiotics take effect, then a low residue diet (ie no fibre, just lovely mash, steamed fish etc).  Time to start probiotics to replace what the pills have stripped out.  After a week approx slowly introduce soluble fibre and slowly build up until you are following a healthy diet with soluble fibre, well cooked, thoroughly chewed and small meals.  In other words what all doctors advise for everything!!  If a food upsets you don't eat it.  Best identified with a food diary.  Many people find they can no longer eat certain foods but everyone varies so there is no definitive list, you just have to try and identify your trigger foods.  For example mine is gluten, but I can eat a little red meat, which is lethal for others.  I live a normal life and continued to play competitive sport for 10 years after diagnosis, and then power walking for exercise until my hip gave out.  All the best.

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    • Posted

      I agree Dina. Information has been spotty at best. This forum is probably the best place to get advice because this is real people dealing with it and telling each other what works. I am asking folks about a high fiber diet and if anyone has tried that after their attack and believe that it helps prevent another attack? Also I read somewhere that salads are permissible but I read somewhere else that raw vegetables or not good so can anybody speak about that?
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    • Posted

      You just sound like me i had colonoscopy which they couldn't complete due to diverticula disease, then had ct scan which showed i had severe DD in my most of my bowel, I'M in uk and the wheels turn very slow . I saw the consultant two weeks ago he said need a bowel resection and non reversible colostomy. devasted in a word i was just having a small flare up at the time he just said low residue diet no indication for how long told me to go to GP so i did but they couldn't advise as no report from consultant,

      various low residue diets conflict and i'm now getting bunged up i'm totally fed up of bland white food i want some spice and tAste,i cant get referred to a dietician wither till they see report argh!,,,,,,

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    • Posted

      I laughed at the list of what you have been told...same here - my experience and from reading here, recovery time is much longer than what physicians are telling us, as well meaning as they may be. I was told I would feel much better after 48 hours on antibiotics - not true at all. Have been on them for 20 days first round, 7 days of a different one the second round and still not so great. Better, but not ready to get back to regular activity at all.Someone in this forum has posted that it is a lifelong situation, and that unfortunately has been my experience (at least this past year, 2 cases within 9 months). I am looking into something I found called the FODMAP diet which lowers overall gas and bloating; sounds interesting and hopefully I will find something good to share.

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    • Posted

      Yes it’s amazing isn’t it that these doctors go from different viewpoints. I had a surgeon said I didn’t have diverticulitis or maybe talk to the G.I. and that he didn’t think I needed antibiotics. Well I did and it was my second bout in the hospital three weeks after the first one and I believe both attacks could’ve been avoided if they had find my abscess in the first place instead of me trying to stomach milk and bread for two months without any fiber Or vegetables or anything else that might’ve helped so my recommendation is to read scholarly articles and look for similarities and overlaps. The first hospital visit told me not to eat seeds or popcorn or anything like that and the second hospital said oh that’s old analogies you can eat what you want so just take it day by day and log what you eat and see what bothers you or not Good luck

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    • Posted

      Feel free to share anything you find as well; I read quite a bit and watch videos on the topic to gain understanding - one doctor or article says one thing, then I read or hear the exact opposite by someone else; I am seeing reputable, caring physicians - high fiber is definitely recommended, but at the same time also causes bloating, etc. So if you learn anything, please continue to reply! Thanks for your thoughts!

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