FED UP WITH FLARE UPS, PILLS, PAIN......!

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Hello there group,

I just want to pull my hair out!  Ok, so im 43, ive been dealing with divertiular disease for about 10+ years now.  I have flare ups roughly 4-5 times per year.  Some of these flare ups have resulted in hospital stays for the default flagyl and cipro drip for about  a week, but for the most part i get the 14 day course of cipro and flagyl.  I am so tired of it.  I flat out refuse to take meds this time.  I was diagnosed last thursday evening with freakin right side diverticulitis this time!  It has ALWAYS been on the lower left side.... what in the world is going on?  How the heck has this thing spread?  Now my GI is talking about a repeat colonoscopy in 8 weeks, and a surgical consultation for bowel resection... neutral  I know I might sound like a brat right now, but I just can't wrap my mind around removing a portion of my intestine.  Especially since it's my understanding that the diverticular pouches can be widespread throughout the intestines and can flare up at any given time....  Honestly, I have a terrible depressed attitude about this.  I feel like if i shut my eyes and ears to this .. i'll be just fine.  Im still young, I have a good job, my children are grown, I am welcoming new grand babies... I feel fine.  Well....not fine... but I don't dwell on it until im forced to.  Anybody feel like I do?  I am a responsible person.  I promise I am... but i'm very frustrated with my body and medical treatment protocols all around right now.  I didn't even know I was sick this time.  I knew I felt tired and heavy in the belly, but no excrutiating pain... until they PUSHED ON IT...... I had no clue I was walking around with a fever either.   It's very hard to pay attention to what's really happening when I have a life to live.  Your thoughts?

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  • Posted

    Hello

    Do you watch what you eat?  I know, I know, nuts, seeds, popcorn, etc. do not cause it according to the medical community but my body says no way to any of these.  Using a food diary, I was able to pinpoint what I ate that caused the flare and it was always related to nuts, seeds, popcorn and foods with a lot of insoluble fiber.  I was in the hospital once and was only seen by a surgeon, no one else.  As he is leaving, he says "Well, I'll see you in 6 weeks to talk about removing that part of your intestine".  I did not like his superior attitude and decided to find another surgeon.  I did and was two weeks away from bowel resection when I really started to do a lot of research on it.  I finally found a gastro doc that says he very rarely sends any of his patients for surgery and just controls it with antibiotics if it is a case of uncomplicated diver.  I would probably think more seriously of surgery if I had an abscess or obviously peritonitis.  I take a dose of Mira Lax every day, stay away from insoluble fiber and  have been flare free now for 16 months.  Before that, I would have a flare about twice a year for the last 5 years.  Just my two cents, everyone is different.  

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    • Posted

      Hello there,

      I have not really monitored what I eat much lately because my genius of a GI argued me down that it doesn't matter what I eat, no matter what I do... this is going to happen because I have diverticular disease....  isn't that wonderful news?  Like I said, I am usually a very conscious, positive person... but this last stupid flare up has me feeling very rebellious and bratty... she prescribed me levaquin bc i had such a bad attitude about flagl and cipro and you know where that god awful posion is?..... yep........ on my nightstand. Today I feel very very bloated, and like... sore in my belly.  It's swollen.  Im at work, and im not in excruciating pain, no nausea and im just sort of waiting to see what happens this 2000th time around the block....  thank you for your kind response!  :-)  Hope you continue to feel well. 

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  • Posted

    Hi Bronze caramel,

    I am exactly same I try to eat sensibility, lost weight gave up my two favourite things which are garlic and onions as these can trigger an attack , done everything by the book and at least 5 times this year already I have flare ups , not serious enough for hospital but two lots of antibiotics , followed by the boring low residue diet and water etc Fed up with it .

    I have tried everything even not eating but then I just feel weak and faint

    Due CT soon so will wait and see what Doc has to say

    I am not sure about surgery either, what if it moves somewhere else these damn pouches can appear anywhere

    I know how you feel and am sure plenty more like us There is not enough research done on this horrible disease and every time I go to Doc it's the same old advice

    I wish you well and be strong

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    • Posted

      Aw thank you, and I wish you well also.  I will eventually get over myself... LOL

      I have no choice right?  Today I feel bloated and pressure in my bottom... if that makes sense... no nausea and very light pain.  Gonna wait it out.!  Take care!  :-)

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  • Posted

    I was diagnosed last week I'm 66 had colostomy yesterday mine is mainly in sigmoid colon. Had really bad left sided pain so had tests that discovered it l must of had a flare as was in bed for two weeks paracetamol to help with pain. I'm going to be very careful what l eat from now on

    Ct scan showed my colon had collapsed which was due to pouch becoming inflammed and narrowed part of colon. After flare subsided colon inflated again. Lot to put up with especially as l also have lupus good luck. I would have colonoscopy if l were you as it will spot any polyps and get rid of them before they turun nasty x

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    • Posted

      I just don't want to find out one day that surgery couldve prevented some intestinal damage.  But... that is MAJOR surgery from what im told... and there is NO guarantee that more pouches won't appear and flare up at will... wouldn't that be just peachy?  Recover from having my guts cut out only to deal with this again anyway????  NO THANKS  anyway, thank you for responding!  Take Care!  :-)

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    • Posted

      After I decided not to do surgery, I found that the medical community once thought that each successive flare would be worse than the last.  This is not the latest opinion.  It is suggested that your first flare is reflective of future flares.  All of my flares have been uncomplicated.  Except for one zealous ER doc who insisted I be admitted with an abscess. After the pompous ass of a surgeon said, no it was not an abscess, the CT was read incorrectly. He also said you are the most chipper diver patient I've ever had.  I should not have been in that hospital on IV drip costing thousands of dollars.  I should have been home, nursing my Amox........

      I do Fitness Pal to track my diet, helps me watch my calories and keeps a record of everything I put in my mouth.  I never see anyone posting the use of Mira Lax.  I hate putting chemicals in my body and hope this won't have any lasting effects.  Mira Lax is a very gentle laxative that only works in the intestine.  I go about 4 times a day, but that keeps everything moving nicely along.

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    • Posted

      Im glad you mentioned the MiraLax.  I use it on and off although i have been told that i should be using it once a day each day forever.  I guess im what you call a nightmare patient.  I question everything, and challenge most other things.  The reason is because medicine is never an exact science.  I have been in the medical field for 17 years and it seems no 2 opinions are the same.  I just want to make educated decisions for myslef based on what feels right for ME... not what some bully doctor or cranky GI is trying to make me do because they are tired of their job and basically see everyone the same.  Im young, and not really willing to accept bowel resection as an option yet.  I go regularly without Miralax, but there are some days that I am probably not moving things out completely... especially if i drink alcohol a few days prior.  I know all of these things... i just want this to go the hell away.  Seriously!!!  I will download Fitness Pal and see how it helps from here.  I appreciate you!  Feel better!  :-)
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    • Posted

      I don't miss a dose of Mira LAX. I also question everything. That's why I decided against the bowel surgery. Future potential complications from that too which could lead to further surgery. Try the food diary. Now I feel in control of this disease. Good luck.

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  • Posted

    I am having a flare up at the moment and so fed up with it. I was diagnosed last year had 3 flare ups since I think I have had DD for years but didn't know what it was They seam to treat it differently in the US in the UK they don't do surgery unless you are really unwell In fact when I saw my consultant I was just given a website for wind I hope everything settles down for you and you don't need surgery.

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    • Posted

      this might sound really crazy, or stupid or both... but i haven't done anything for this flare up.  I haven't taken any meds... i just rested all weekend and drank a ton of water and i actually feel better today.  Go figure?  I did feel bad yesterday afternoon because they had blasted food trucks come to our offices ... I couldn't help myself... I needed a taco... :-)

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    • Posted

      I always have a fever and that's what sends me to doc. If I didn't I would do as you are doing. I often wonder if a bout of food poisoning damaged my colon. Mine started about 6 months after that. Do you remember anything?

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  • Posted

    I was diagnosed September 2016. Before then, I had never heard of this disease. Since my diagnose, I have been hospitalized twice, and have had four flair ups. The last hospitalization my Dr told me I should consider surgery, because I now have not one, but two areas!! I'm terrified of the thought! I have kept a food diary, however, what didn't bother you two weeks ago, or a month ago - now can. Food has almost become an enemy, not fun going out to dinner anymore, so I definitely can relate to your frustration. There certainly doesn't seem to be much information about diverticulitis and the docs seems very lax. It's hard to stay positive when you're hurting - hang in there! One day at a time....

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    • Posted

      I actually feel pretty good today.  yesterday was meh... i was ok until i ate some stuff i shouldn't have... but i was telling another person on this forum that for this 999th flare up, i have done nothing. i filled the prescription for levaquin, but after googling side effects and reading reviews of how it ruined people's lives.. i definitely sidelined it.  Funny enough, i feel exactly as i would feel on meds... better but not GREAT... tolerable and able to work.  Isn't that strange? 

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