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How to live/cope with diverticulosis

Posted , 14 users are following.

ItsTheFitz
ItsTheFitz

I have had what appears to be called "flare-ups" since my mid to late twenties. I am now 31. I finally buckled down and gathered the courage to tell a doctor about it a couple years ago, since I couldn't live with the symptoms I was experiencing. I had a colonoscopy done last year and that's when I was diagnosed with Diverticulitis and IBS, luckily no signs of IBD. She flushed the two infections I had and gave me antibiotics. After that, I was given some instruction on changing my diet, eating more fiber, etc. I felt so much better. I felt like I was finally cured, and it would never be a bother again except maybe symptoms from IBS. 

This past month I had some symptoms off and on, which I figured to be IBS. Then last week, it had escalated to where I was calling out of work, so I went to my gastro again. I just knew my symptoms were just how they were last year, and suspected another infection. Sure enough, my doctor confirmed what I thought, and I'm back on the antibiotics(Metronidazole, Cipro and Flagyl). My symptoms have improved somewhat. My question is: how do you go about explaining to people what your 'illness' is? I tell most people and they think, oh you just have diarrhea, no big deal. Go to the bathroom and move on with your life. It's very frustrating that no one seems to understand what it's actually like to experience this. When I have a serious episode, I'm wiped out for the day. All I want to do is sleep because I don't have energy to move. 

Obviously, I'm going to continue to have 'flare-ups'(yay), so I am trying to figure out the best way to cope with this. Another ongoing discussion is... SEEDS AND NUTS. I'm supposed to shovel fiber into my mouth, but I can't have seeds?... really? How many vegetables and fruits do you know DON'T have seeds?! I'm having a hard time wrapping my head around the fact that I can't have seeds or nuts ever again for the rest of my life. Also, the recommended fiber supplement is absolutely disgusting.(Konsyl) I guess this is more of a rant/question than anything. Any advice or positive experiences you have would be helpful. Even if it is just an emotional story of your own. Thanks.

0 likes, 16 replies

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  • linda59603
    linda59603 ItsTheFitz

    Posted

    I just tell people I have IBS when I have a bad flare up as most people understand to some degree about this. Not everyone has the same issue with nuts and seeds some on here do eat them you have to find what triggers your symptoms. As for fiber supplements I take Benefiber which Boots often have on offer. You just stir into any drink and there's no taste to it. It works for me. Hope your symptoms improve soon.
  • donna89206
    donna89206 ItsTheFitz

    Posted

    HiFitz,  Sorry you are stressed out with your diverticular disease.  It certainly does that to everyone that has it.  Once you have determined you have an infection and doctor has given you medication to clear that up it is a good idea to go on a clear diet for 2 -3 days to help your system clear up the infection.  That is clear fluids only. Water, tea, coffee, appe juice, jello, clear soup broths.  If you do this you will feel better more quickly.

    Then you need to ease into eating food again that your system can tolerate. Cooked, soft lean meat (chickenm mince, etc) with cooked vegetables such as green/yellow beans, squash,mashed potato, soft boiled or scrambled egg etc. that are easy to digest.  Canned fruit for dessert. Salads and very fibrous foods will be hard to tolerate at this stage.

    To this take 2 doses of Bene-fiber daily. One in the morning and one in the evening to get enough fiber to keep your bowels open and functioning.  There are other fiber suppliments out there but this one works for me. You can mix it into tea, coffee, juice, water and it has little or no taste and does not get thick in your drink.  You can also add it to soups that are easy to tolerate. 

    As for your co-workers - tell them that disease is erroding the lining of your bowel and it is very painful.  (Which it is)

    I was able to work until age 48 and then needed to go on disability and retire. I hope better for you.

    Donna

    • donna89206
      donna89206 BA21_3RU

      Posted

      That was the conventional wisdom when I first started having problems with diverticulitis.  Unless blood tests indicate you have an infection (white cell count elevated etc.) the doctor may suggest just a clear diet for a few days to give your bowel a rest and then start back on small soft food cooked meals, accompanied by a fiber suppliment. I also take a pro-biotic but to be honest I don't know if it helps that much or it is coincidence that I start to feel better. Still - it can't hurt.
  • BA21_3RU
    BA21_3RU ItsTheFitz

    Posted

    Hi I had dititulitis since 2006 in and out of hospital on iv drips etc I try all diet but no matter what I do I still get flaire ups don't know what brings them on I get very depress crying spend at least 3 days in bed each time I hate the antibiotic and try my hardest to keep it under control and not take them , I just don't know what to do
    • ItsTheFitz
      ItsTheFitz BA21_3RU

      Posted

      :-( I hope things get better for you. I was happy to discover this support group.
  • madge07350
    madge07350 ItsTheFitz

    Posted

    You need to avoid repeat courses of Cipro. The fluoroquinolone antibiotic class can have very bad side effects some of which can be permanent. Each time you take this drug you increase the risk of being "floxed". At the first sign of a flare up you need to go on the liquid diet. Often this will settle the flare up without any need for antibiotics. In Scandanavia they use bowel rest rather than antibiotics for diverticulitis without complications.
    • donna89206
      donna89206 madge07350

      Posted

      Yes I did say in another entry that the current wisdom is NOT to take anibiotics unless you have tests that indicate infection in your blood tests.

      Liquid diet is important as I state above, but this or any diet does not solve the problem once you have it.  It does reoccur over and over again until such time your bowel has narrowed from repeated attacks that you can no longer pass a stool and the bowel or part of it needs to be removed. 

      A rotten awful disease research takes very little interest in.

    • ItsTheFitz
      ItsTheFitz madge07350

      Posted

      Thank you for letting me know. I had no idea. It just seems like the liquid diet doesn't take care of the problem. It seems to calm the upset but when it becomes a concern when you lose a certain amount of blood. So, next time cut back on fiber, go to a liquid diet and that should help?
    • madge07350
      madge07350 ItsTheFitz

      Posted

      When in the throes of a flare up fiber is the last thing you want. I have never lost blood with my attacks even the first one when I ended up in hospital on IV antibiotics. That was 14 years after being told I had a few diverticula aftef a barium enema. Since then I have had 3/4 flare ups. Now that I recognize the pattern I go on the liquid diet for a few days then the low fibre diet and so far this has worked. My colonoscopy after the first attack showed far more pouches despite having a high fibre diet in the intervening 14 years. My gastroenterologist wants to remove 15cm of colon but I'm not keen. After having a bad reaction to the Cipro I am not eager to have an operation that might involve further antibiotics. The destruction of the beneficial gut flora that all antibiotics cause is very bad for overall health not just digestion.
  • DestinyP
    DestinyP ItsTheFitz

    Posted

    Hi, I'm 33 and was diagnosed Feb18, 2016 with my first bout of the Big D via Ct scan at the ER. (MULTIPLE DIVERTICULA IN SIGMOID FOUND DURING COLONOSCOPY A YEAR AGO) What brought me there was an intense feeling of dizziness and fatigue w/ bloating, slightly tender tummy but nothing too uncomfortable. (No fever) was initially put on flagyl and cipro but could not hold it down so switched to Augmentin also probiotic Culturelle. Took about 2 1/2 weeks to feel like my old self again with liquid, bland diet. Today I feel like I may be relapsing. After days of stomach bloat, Im experiencing much stomach pain, started on left radiating across lower stomach expecially when up and walking. BM'S soft but feeling incomplete. Nervous to see doc because affraid of the "SURGERY " convo. Being so young this ways on me, thinking about the effects of this in the future and knowing I have a long road ahead of me with this disease, hoping for the best

    • ItsTheFitz
      ItsTheFitz DestinyP

      Posted

      Well from what I've read here, it doesn't necessarily mean surgery is the only answer. Try to avoid food high in fiber and eat easily digestible food. See if that helps. I'm not going to just refill the antibiotics every time I have a flare. Repeat doses of antibiotics has negative side effects as well.
  • maryanne46
    maryanne46 ItsTheFitz

    Posted

    Hi I got given Metronidazole this week. Have come of them.after a day as they have made me feel.spaced out and tired. Have you had the same symptoms?
  • salvagedfaith
    salvagedfaith ItsTheFitz

    Posted

    I'm so sorry! I can totally empathize and its at least a relief to know we aren't alone in this. I'm trying to figure out how to live with this sometimes debilitating disease too. It's painful and frustrating esp trying to know what I can eat for sure and all the food that I can never eat again. I also suffer almost 24/7 with bad nausea for 11 months now. It's hard to live a normal life and people just don't get it. I've had to call in sick to work so many times in the last year. It's causing me allot of depression and anxiety, esp not knowing how I'm going to feel from hour to hour. Any advice and prayer would be appreciated. I have IBSD, Diverticulosis and also an umbilical hernia.

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