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Surgical Consult Tomorrow - Need Pointers!

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Bronzecaramel
Bronzecaramel

Hey guys,

It's been a few weeks since i've posted on here.  Since the last time I posted, I had yet another Diverticulitis attack.. but this one was mild. I refused to fill the meds... I have SO MUCH MEDICINE in my home....   To add to matters, I have also had these recurrent IBS flare ups lately.  Tomorrow I have a surgical consult and im feeling overwhelmed.  I don't know how to properly communicate to this guy how miserable I truly am.  I don't know if he is at all concerned about the quality of life that I am currently experiencing either.  Each day is filled with some sort of abdominal discomfort, whether acute or dull ache.  There are bouts of fevers, aches, nausea and general loss of hunger... and oh yeah, almost always flip flopping between consitpation and diarrhea...  I am able to function, only because I have gotten used to feeling like crap.  It's quite sad actually.  I am not sure about all this surgery stuff.  I have a pompous GI who throws cipro and flagyl at me like nobody's business... refusing to actually empathize with me.  Last time, I didn't even see her, I saw her NP who basically told me "look, you have diverticulitis.. it's a progressive disease and there's nothing we can do about it except antibiotics or surgery...".... i was floored... although i know she was telling the truth.  My diverticular disease has now progressed to the right side as well.  What do  you guys think... elect to have surgery as a hopeful preventative now while im 43, or just keep dealing with the pain and flare ups?   Im so lost as to what to do... and i meet with this surgeon tomorrow.....  any thoughts?  Oh yeah, my wonderful GI cancelled my colonoscopy this friday with no explanation... smh - time to find another doctor I think...

Thanks guys! 

~Bronzecaramel

1 like, 25 replies

25 Replies

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  • susan95516
    susan95516 Bronzecaramel

    Posted

    I am so sorry you feel so rotten. I really don't know what you should do it has to be your decision Here in the UK they don't offer surgery unless you are really bad. I also have IBS which courses me as many problems as my DD I hope you get the answer you are looking for tomorrow. Good luck with your appointment. Sorry I can't be of more help

    • Bronzecaramel
      Bronzecaramel susan95516

      Posted

      Thank you for responding.  I won't jump headfirst into surgery.  I will take my time to make the most informed decision. I don't want to have surgery for something that will happen again anyway... i've definitely heard of that happening. 

       

  • alice29525
    alice29525 Bronzecaramel

    Posted

    You really should start the antibiotic instantly, and actually go to ER, you could get a ruptured bowel, and lead to peritonitis, and/or septic shock, it is life threatening, unlike IBS !!
    • Bronzecaramel
      Bronzecaramel alice29525

      Posted

      Thank you for responding.. I wish that you could see the literal sack of pill bottles from all the antibiotics in my posession... im just sooooo over the pills...  I hear you tho...

      Thank you! 

  • Guest
    Guest Bronzecaramel

    Posted

    Here in the UK the disease is managed mainly by diet, so there is another option to pills or surgery.  But of course in the USA the surgeon wants your money, not for you to manage better by yourself.  And surgery doesn't always work out for the best, particularly as you are still young (compared to me!!).  I have been coping for 16 years now with diet, a soluble fibre supplement and medication when necessary.  What sort of diet are you following?  Have you even been given any advice?  As for feeling bad, that unfortunately can take ages - and I do mean months sometimes - for the pain and discomfort to go.  At times it seems like it never will, but others on this site will tell you for most people it does.  II months and 3 flares later I am now virtually pain free, with just the occasional niggle maybe once a week.

    Yes, and it is time to find a more human doctor!  Good luck.

    • Bronzecaramel
      Bronzecaramel Guest

      Posted

      thank you for your reponse... here in the US.. food is super expensive, and i am unfortunately one of the "have nots" so i eat what is reasonably priced... i don't really know what to and not to eat until i have already eaten it... then im in for a few weeks of suffering for sure....  what is a soluble fibre diet... im on a mission to find out how to heal my digestive system naturally bc honestly i cannot afford surgery and i can't take living like this either... it's horrible every day on some level. 

      Thanks again!  :-)

    • Guest
      Guest Bronzecaramel

      Posted

      If you can afford it, you should get Metamucil powder.  You can get it from Amazon on the Internet.  It is Psyllium husk (a natural ingredient) which you mix with 12 oz water and chug down straight away before it thickens.  It is soluble fibre and it bulks and softens the stools and makes them easier to pass.  It also has a mild laxative effect so you will probably go more frequently.  The UK equivalent is called Fybogel and is used to aid in bothe Diverticular Disease and IBS.  Do you have IBS C, IBS D, or both?

      Then if you Google soluble fiber and insoluble fiber you should be able to find out which is which.  For example, skins like potato, apple are insoluble fiber, so peel your apples, and leave your potato skins.  They are a great source of fiber, but not for diverticulitis sufferers.  Then you can get your vegetable fiber from home made soups, blended down with a processor or stick blender.  Similarly fruit smoothies (but watch the sugar content).  Making them yourself in batches and freezing works out much cheaper than pre-prepared processed stuff, and cuts out all the additives.

      I make veetable purees as well - for example, I cook carrot, swede, potato together, drain, then mash well and season with black pepper.  I personally leave out the butter/cream, as fat is one of the things that triggers my DD and expands my already far too ample waistline!  Otherwise I do peel my veggies, cook them well and chew slowly and thoroughly.

      Some people advise taking probiotics to help replace the good bacteria in your gut which got killed off by the antibiotics.  I don't know what's available in the US, or the cost, but here we can get little pots to drink from the suermarket.  Another good natural internal healer is pure aloe vera juice (not the juice drink).  I take a teaspoon morning and nigth.  It's revolting and not cheap but a little goes a long way.

      If you have to watch your money, then I am hoping that means you don't have takeaways and high calorie fat laden meals.  They can play havoc with the gut and you never know what's inside them.  They could contain all sorts of additives, nuts and seeds which could be triggers for you.  Cooking from scratch I find is both cheaper and healthier.  I batch cook and freeze, and when I was working did all the cooking on Sunday for the week, so I could just microwave when I got home from work. 

      Another thing to watch out for is wheat and gluten, my main trigger.  Do you find you get very bloated after eating bread, cakes or pastry?  That won't help DD or IBS and could indicate an intolerance.  I know you can get gluten free products in your supermarkets, but when I was in the USA I found you couldn't in restaurants.  Here in the UK most places now do offer gluten free alternatives.

      On this site Susan is probably one of the most informed about coping with both diseases together.  If you read her posts you will see she has struggled for months now to find a way to manage things, but does seem more settled and coping better.  As she says, it is trial and error to find out what suits you best.

      All I can say is if you can find food that suits you, you should slowly start to feel better.  Good luck

  • kathy_33400
    kathy_33400 Bronzecaramel

    Posted

    I know all too much about this s****y disease..my gastro surgeon is sending me for a gastrogrsfen enema in a couple of weeks..I love this guy , he is so thorough and doesn't bring you right in to surgery. I've had this disease for 6 yrs and quite sick if it, almost hoping I will have surgery, we'll see in a couple of weeks. I'm sure your GI cancelled your colonoscopy because of your flare up. Mine did the same and said you have to wait for a couple of months after your flare-up . If you feel your DD is controlling your life, then I say absolutely have the surgery. From what I gather it doesn't go away, ever flare-up seems to be more severe for me...I hate the meds, they make you feel sicker than you really are. Let me know what the surgeon says tomorrow and good luck.

    • Bronzecaramel
      Bronzecaramel kathy_33400

      Posted

      Hello there Kathy,

      Sorry to respond 2 days later, but I actually just got around to it.  Ok, so I have mixed feelings about the consult.  Long story short, the surgeon is not convinced that surgery is going to help me just yet.  Part of the problem is that my "wonderful" GI practice did not forward my medical records as they were supposed to do.  So that left him scrambling for CAT scans and such at the last minute.  Secondly, the line between IBS and Diverticulits is very fine... sometimes you can't tell the difference unless there is a positive CAT scan to differntiate the 2.  The only CAT scan he could get was one that showed diverticulits on the "right" side... which he was not willing to touch because he feels that right side dd is extremely rare... as he does hundreds of surgeries a year and only roughly 2 to 3 of them are on the right side...  so that leaves him with questions about the left side dd.  Even though I have been hospitalized twice over the past 8 years, and treated NUMEROUS of times with flagyl and cipro by my GI's... from a surgeon standpoint, he cannot justify cutting me until he knows 100% that I suffer diverticulitis on the left side... I was upset.. but I also respected his professionalism in wanting to be absolute before agreeing to perform such a drastic surgery.  So..... he asked if I would be willing to let his practice of GI's follow me from this point... so that they could effectively identify what the deal really is... IBS, Chrons', DD, or whatever else... I agreed.. and am now just waiting for my next appointment.   Meanwhile, my IBS or whatever, has kicked into HYPER MODE... i can't eat anything without abdominal pain, bloating, nausea, misery.... even water did it this morning... (yeah, it was cold and had fruit in it but still).........UUGGHHH I HATE THIS

      Thank you for your kind response! 

      Take care!

       

  • tricia27339
    tricia27339 Bronzecaramel

    Posted

    Hi

    Sorry to hear you are feeling so unwell. I know the feeling collapsed last May spent 3 days in hospital (UK) then sent home as ward was closing for bank holiday. 2 days later was sent back as emergency as no bowel sounds. Spent the last year basically feeling like I was dying!! Was told could be. Was told could be bowel cancer (my mum died 6 years ago stomach and bowel cancer ) was having scans and sigmoidoscopy every 2 months and they said couldn't get to the site. I pleaded 6 times for them to knock me out and get there !! The surgeon kept saying "well you are 58 and have no dependants and there are others that have young children !! So I didn't matter basically. He told me to eat white bread with butter, mashed potatoes with small amount fish or chicken and nothing else!! Stayed like that for nearly a year until my husband lost his temper with surgeon lol. Was speeedily admitted and put under anaesthetic and they got to two areas. One bad infection and 1 large bowel stricture. Diagnosed DD. Nothing else said so paid to see nutritionist and with her help started eating small and often with some fibre. Went back and told surgeon this his reply 'Will see you in A&E when bowel stricture closes up. Husband said to him what will that mean and he replied if you don't get her here quick enough could rupture up into stomach as stricture is high up in bowel which could mean death. He is not willing to operate obviously I am too old and have no kids !! Long story but just to say I know what you are going through and perhaps as well as seeing surgeon find someone who knows the disease inside out and can work with you to help make you feel better. I now feel good and working with nutritionist have had no pain for 4 months at all and prior to that pain was bad every day. I actually feel alive and not ready to be buried. Perserve and hopefully find the right solution for you we are all different with this disease. Xx

    • susan95516
      susan95516 tricia27339

      Posted

      I live in the UK and I don't care if the NHS is in a mess you should not have been treated like that. If it happens again get in touch with PALS and put a complaint in. I am glad you are feeling better now x

    • tricia27339
      tricia27339 susan95516

      Posted

      It is really bad in the UK I find. Impossible to get doctors appt as at our practice the receptionist determines whether you get an appt or not !! Will certainly remember PALS and if I have trouble in the future will get in touch with them thank you. I am under no illusions and like everyone will have a flare up at some time but currently working hard with the nutritionist to get myself in a good way and it's working 😀 Hope you are ok x

    • susan95516
      susan95516 tricia27339

      Posted

      I hadn't thought about seeing a nutritionist i think I look for one in the morning. Are they very expensive? I am lucky at my GP we can get an emergency appointment on the day also I have spoken to GP over the phone and they have given me antibiotics x

    • tricia27339
      tricia27339 susan95516

      Posted

      Hi

      Mine costs me £55 for first appt which was a long one and I had filled out a very long questionnaire first. She then emailed me a report that night along with very detailed options to try. She kept in contact by email every week until next appt. I now see her every 5 weeks and it is £40 and we go through what has been happening. She added a different probiotic as stomach was swelling constantly and we have now got it right no swelling no pain. We have removed certain foods completely from my diet but we keep extending the the range of foods that I tolerate easily. I even went to ibeza for a week and with her suggestions for meals had a fab hol with no problems at all. She has been worth every penny x

    • Guest
      Guest tricia27339

      Posted

      Thanks Tricia for a really interesting post.  I had a look in my area (mid-Devon) and there were a surprising number of nutritionists.  Something to bear in mind.
    • susan95516
      susan95516 tricia27339

      Posted

      I will try and book to see one sounds like they are worth every penny. Thankyou
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