Conflicting advice

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I was diagnosed 15 months ago and told not to worry. Five days later I was in ER with what I thought was maybe a cyst on my overy. Dr said diverticulitis and I was so shocked I could have fallen off the bed. To present I have had 4 attacks 3 of which needed antibiotics. My doc who did colonoscopy said 2 days liquid then immediately to 30 grams of fibre. EVERY other doctor has said low residue. This last flare up started 7 weeks ago and family doc did not give me antibiotics fast forward Easter Sunday I am in ER with pain everywhere from my ribs down on both sides and down the middle. CT scan we don't see anything must be your DD so take these antibiotics and follow up with surgeon (still waiting to get to that appointment) fast forward 2 days ago pain is getting worse so I went to non life threatening ER told WBC is fine (whew) but here are more antibiotics you can take if you need them. I said I never get a fever so how will I know and the doc looks right at me and she says "you'll know and don't come back here go to proper ER" She also said my WBC was 10000 on Easter and I did not need antibiotics then. WTF? I didn't need them at 10000 but at fine you give me antibiotics. I am so confused. I see the surgeon on the 30th and he is going to say have it out just like he did in October. His rule is two minor attacks and out it comes btw this is the 30 grams immediately doctor. Does any of this make any sense to anyone? I am so confused. Any feedback wouldbe helpful. I have as many days of pain as not but most of the time the pain is just there no need for pain pills. Thanks. Julie

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  • Posted

    I had a cyst on my ovary and I know the pain.  Once it burst I was fine so it doesn’t seem like that.

    I have had many DD flare ups and been hospitalized 3 times.  All tunes IV antibiotics and sent with some to take for a week after.

    I don’t feel really well for about 3 months.

    I avoid fiber!!! Only in small amounts.

    The last almost flare up I applied heat, took Bentyl an antispasmodic and liquid diet for two days.  Gradually increased to soft low residue diet.  No skin, seeds or raw veggies. I have been good but I’ll still be very aware of what I eat.  

    High carbs work for me but it’s difficult to keep weight off.

    Everyone is different. A food journal helps.

    I did see a surgeon twice.  He said keep your bowels open.  I tried Metamucil but it did not work.

    I take Miralax often.  It works for me.

    Prayers you’ll get the correct diagnosis.  Maybe an MRI?  Just guessing!

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  • Posted

    Thank you for replying. I am sorry you had a cyst. I was lucky not to have one. I am doing low residue with no fibre no skins and def no seeds. I hate this disease!

    I take benefiber to keep things moving and keep a food diary with a long list of suspect foods that I think may have triggered any of my attacks. Apperently I am doing almost everything right but it isn't helping. It is so co fusing what to eat what to not eat and my family think I am bonkers when I say can't eat this or that but they don't understand.

    Anyway thank you for your reply.

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  • Posted

    Removal of the colon after just 2 minor attacks is far too aggressive, but a typical response from a US surgeon looking to make a buck!  And 30gm fibre after just 2 days into the attack is asking for trouble.  The low residue diet is the correct approach.  Were you ever given any information about changing your diet and lifestyle to manage this condition - that is how it is managed here in the UK.  Surgery is not an option unless there are life threatening complications, or the quality of life has become impossible.  Also doctors here are becoming concerned about people becoming resistant to antibiotics so prescribe them less. 

    First you need to know it can take months for the pain to subside after a bad attack - in my case 10 months and I still get niggles if I eat the wrong things.  Second, I think you should see a different surgeon, as you clearly have no faith in the current one.  A second opinion never hurt.

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    • Posted

      Thank you for the information. Yes I have been given the info on low residue diet and food journalling. I find walking really makes my side hurt. I am going to ask for a second opinion but here in Canada my surgeon is so well known no one wants to see me so he will have to refer me. I don't believe in the 30 grams of fibre right away but since the ER doc said the same thing I tried it. I WILL NEVER DO THAT AGAIN! I believe this attack was worse and longer because of the extra fibre. With free health care I am surprised they push so hard for surgury as wait times for all surgeries is a long time but my friend told me my surgeon makes more money off of every elective surgury he brings in so he will make more off of me for the colon resection then he did for my burst appendix which was emergency surgery. Money makes the world go round unortunately.

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    • Posted

      I have hundreds of relatives in Canada, and they are not complimentary about your healthcare system, including an ex-nurse!  I understand the waiting times are horrific too - my cousin waited 18 months to get an MRI scan.  Our NHS has its problems - seriously strapped for cash, but excellent in emergencies, just not routine stuff like hip and knee replacements. 

      Sounds like your friend has this surgeon pegged - of course he's going to push for elective surgery.  If he's going to have to see you before referring you, try asking all the difficult questions.  Why elective surgery NOW?  So he'll give you the waffle about "so it won't give you any more trouble" (who's he kidding).  Next questions: "what are the statistics on recurrence in a different part of the colon" (note I have been specific, not the vague - will it come back - many people know it does).  "What is the incidence rate of hernias developing after surgery"?  "How will it affect my diet and toiletting"?  "Will I need a stoma and colostomy bag, and if so will it be reversible (another operation) or permanent"?  "How long is the recovery period to full fitness when I can do everything I did before".  (People have reported recovery times from 3 - 6 months to a reasonable recovery, and up to 18 months for full recovery).  I don't mean to belittle the people for whom surgery is essential - in an emergency or where they have no quality of life - they have no choice, and my deepest sympathy.

      Are you one of the thousands, if not millions, who stand to lose their jobs if they are off sick for more than 2 weeks in a year?  If you are that's the last sort of stress you want.  And getting another job with a poor health record will be more difficult.  I can't see any employer being sympathetic about elective surgery - many of them are ruthless even when it comes to faultless accidents, emergencies or life threatening illnesses - again anything to save money.  Of course you know every GA carries a risk, and every operation the chance of developing an infection, with more and more being antibiotic resistance.

      Getting over an attack does take months, but if you have time, patience and don't try and push yourself too hard too soon, you may well be able to manage without surgery.  I have managed for 18 years so far, with just 3 attacks in the first 14 years, and 3 since.  During that time I lived a normal life and took part in competitive, but non-contact sport.  I just take great care in my eating.  I'm no saint and do get problems when I slip.  But a couple of days liquids only followed by a couple of weeks low residue normally brings things back under control.

      Bottom line - take your time and get all the information before making any decision.  And give your body a chance to heal.  You'll always have the condition but it can be managed.

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    • Posted

      Thank you felinia this is excellent advice. I will write down those questions and ask the doc and won't accept vague answers.

      I don't work due to an anxiety disorder and my family doc who has seen me for 8 years said don't do the op your anxiety can't take it and who will help you when you are home? I live alone and if I went to my mom's the stress there would make things so much worse.

      Thank you again.


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    • Posted

      I live alone and recently had to cope by myself with my leg in a brace and elevated for 6 weeks, plus a broken hand, following an accident.  I have no close family, and none of my friends live close - the closest actually can't drive, and there is no suitable public transport to my village. 

      So I had to rely on supermarket deliveries of microwave meals, plus my next door neighbour picking up basics from the village shop, and taking paperwork and me to and from the doctor. 

      I know how difficult it was for me to cope alone, so your doctor's advice is very good.  He knows you and your needs, and whether or not you really do need surgery.  Good luck.

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    • Posted

      I can so relate. In 2006 I had a horrible accident that left my dominant hand & wrist useless. I still don't have full use by get by now ok but back then was a night mare. I don't know how many frozen dinners landed on the kitchen floor. I know one night I made 4 frozen dinners before I was able to eat 1 in tears. I had to learn to do everything with my  "wrong" hand. But somehow we always get through it. I sincerely hope all is better now with your leg & your hand.

      Less pain tonight YAY! Thank you for your knowledge and help.

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