Number of Flare Ups

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Can anyone share on the number of flare ups they have in a year?  I have had a flare up ( uncomplicated) almost every 6 months.  My doctor said she would rather deal with that then have surgery.  I don't know what is causing this but have stress issues dealing with anxiety/menopause issues.  The number of flare ups is scaring me a bit and I don't think its a good idea to be on antibiotics that much even though its the only thing to relieve symptoms.  

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  • Posted

    Please do not avoid the antibiotics. I did and had a major bleed which involved a stay in hospital and 4 units of blood. Also my Dr was not happy with me as you can imagine. He said I needed the antibiotics and should have taken them. The problem the system is fighting is people who do not need antibiotics or will not benefit from them.
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  • Posted

    I also get twice a year and no surgery is recommended.  I can live with that right now.  If I had more that might change.
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    • Posted

      Do you notice anything specific you are eating or maybe stresses causing the flare ups?  I’ve added fiber to my diet and feel like I eat pretty well. I’ve stopped eating popcorn and seeds so I’m not sure why I continue to go through this 2x each year?
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    I had 3 flare ups in 6 weeks Antibiotics were not effective I was hospitalized and a infectious disease specialist had to culture After a 3 day period the right combination of antibiotics was formulated and interventions given for 3 days in hospital and 7 days at home Because of ineffective antibiotics the infection welded my small intestine to my large Surgery was required ( twice in 2 weeks) Please take your antibiotics and b thankful that they work My life has changed I wish you the best take care
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  • Posted

    Hi,  I have had so many in the last year I have lost count! Approximately every 6-8 weeks. Seeing surgeon tomorrow. 
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    • Posted

      Hi hilary please ask lots of questions If you still have appendix surgeon will almost automatically take that to and will also take some of small intestine My surgeons intent was to do lapiscopic but couldn't get good view and had to do open Recovery has been harder than ever imagined I don't think I would do it again mine was emergency due to antibiotics not working But most do well with surgery

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    • Posted

      Hi Ellen, I don’t think they are intending to do surgery or even consider yet. Even though I was hospitalised with severe pain, high CRP levels and on IV antibiotics, the ultrasound came back as no infection or inflammation in the diverticula.....very odd. Having said that, the pain is unreal and so debilitating. 
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    • Posted

      I'm so sorry about the pain high CRP is inflammation it has to b somewhere The pain was me doubled over literally on the floor dog's licking me in the face and unable to get up and docs still saying inflammation I sure hope you get some answers if your insurance allows get another opinion

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  • Posted

    How can you tell when you have a flare up?I have pain in my left side worse after a BM. Have had DD. Last sigmoidoscopy last week showed no infection but inflammation. So Dr insists I need only pain meds and Bentyl. Neither agree with me. Don’t blame you about antibiotics. Unless you’re sure you are infected you certainly don’t want them. My question I guess is how can you be sure it’s an infection?
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    • Posted

      I have almost constant low level pain.

      It is when I feel ill or there is an increase in pain. For example as we drive along every little bump or turn is really painful, I know then I need to start the antibiotics and try to hit it

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  • Posted

    I have had 3 or 4 this past year. The last was when I ended up in the zeR with perforated bowel. Now waiting to have surgery. It's no longer an option.

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    • Posted

      Oh wow bless your heart. Mine just hurts like the devil. He just keeps telling me I need stronger pain meds are increases my Bentyl.  What do you all think? 
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  • Posted

    Hi Cindy

    Are you in the UK?  If you are and are only having 2 uncomplicated bouts of infection a year, then the NHS will not do anything apart from giving antibiotics.  They are unpleasant, with nasty side effects, but that is better than developing one of the very serious but fortunately rare complications.  It does take time to get over an attack, 4 - 6 weeks or more.  I hope you have modified your diet and are following a healthy one, with a good amount of soluble fibre.  Stress can trigger DD so I would suggest you look at relaxation methods, like yoga or massage.

    If it is just inflammation, not infection, then all you will be told is to take pain medication.  My own GP won't prescribe antibiotics any more unless essential, due to fear of antibiotic intolerance.  It can be difficult to tell the difference in the pain between just inflammation, or infection.  Infection usually comes with fever, chills, nausea, cramps, passing blood (or some combination).

    If you are OK in between attacks, then you would seem to be less affected than many people who post on this forum.  They have complications, or additional gastric conditions, which sometimes make surgery essential.  I have coped just fine with uncomplicated DD for 17 years, having just 3 flares in 14 years, then 3 in quick succession in 2016.  But I am fine now, although it took over a year before the pain finally went.  I lead a totally normal active life, just watching what I eat.

    If you are outside the UK, then it's different.  In the US the usual treatment is far more aggressive - hospitalisation, with a far greater volume of antibiotics, and surgery is often suggested for preventative measures after 2 attacks.  It is not something to be taken lightly as it's major surgery and no guarantee it won't return. 

    The posts here will give you plenty of information - all the pros and cons, but you should be aware that posts are biased towards people with complicated problems, or ongoing issues.  For these people surgery has been life changing and essential.  Those who recover after medication usually stop posting.  Best wishes

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    • Posted

      Hi Felicia,

      I am not in UK. I’ve only been hospitalized once for this which was 10 years ago.  I started having flare ups in 2016 and have had one about every 6 mos since then. I usually have fever and just pain/cramps.  I’ll take an antibiotic and am ok in between except for a little IBS her and there. I read that low seretonin in your system can cause multiple flare ups. Stress is a factor too   

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    • Posted

      Hi Cindy

      Well if you're having the fever/cramps as well, that is infection I guess and each will leave a bit of scarring inside and take that bit longer to heal.  It will also narrow the passage and make it even more important to keep the stools soft and easy to pass.  I think you need to be extra vigilant and careful with your food and really try some of the relaxation techniques suggested.  Also I take a liquid fibre supplement every day which keeps me loose - you DON'T want to become constipated with this.  But you need to be sure it doesn't clash with whatever you are doing for your IBS.

      As you do have IBS as well, poor you, your case becomes more complex, like some of the other responders to this post.  If it were me, I would try and avoid surgery if I could.  That was the advice given to me by my cousin who was in the medical profession, and who had seen the problems and complications suffered by some after surgery, like recurrence, incontinence, recovery times.  If you are told you do need surgery, do make sure you do plenty of research before making a decision and ask many questions.

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