Diverticulitis and possible colitis...in some pain and hungry

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Last year I had a a severe infection, piles of antibiotics and then food poisoning. Then diagnosed with colitis and something they didn't focus on... Diverticulitis! The colitis drugs weren't working and my gp gave me pred. Foam where I peed blood for nearly two weeks.  Only seeing the hospital once before and the useless nurse who discounted everything... I saw the head Thursday... Not realising I wasn't well then the focus was is or isn't it colitis.  Friday night I woke up with a 'stitch' in my side by my hip... Sort of where it was sore from the foam.  Saturday I didn't eat until about 8 pm and very little since then.  A trip to the hospital found I was suffering diverticulitis on Monday . I am a bit better... Sinus infection I'd been fighting is gone.. But still bloated with the odd niggly bits on both sides.  The surgeon I saw said I was borderline for being admitted but thankfully I was well hydrated albeit very bloated and in pain... Given drugs.. Sent home with a number to call if I got worse plus an emergency outpatient CT scan due next Wednesday ... Told to eat bland but..... Ok now I'm to the crux of it.... I love my food but it makes me nauseous but I'm sooo hungry.  Even the hydrating drinks are turning my stomach at just the thought.. Anyone else go through this vicious circle.... I want roast beef or pork chop suey or...I just want to stuff my face.... But if you put it in front of me I'd cringe!!!!!! Even though I want it!

thanks 

val aka fluffe 

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  • Posted

    I can only speak of life as it is for someone with Diverticular Disease. First bout of infection in 2006 - so have lived with it a long time.  Usually about three bouts a year; then a period of ten months with a bout every month and ill more than I was well.  Started taking Acidophilis from Holland and Barrett health stores (UK) in July last year and have not had a bout since!! I feel I have my life back - all because of a tablet....and of course being very careful NOT to eat seeds, nuts, pips or skins - so that rules out several fruits inc the centre of bananas; and all dried fruit like sultanas, currents, figs etc - never forget, when the fruit is dried; so are the skins and pips....so just don't have them!!  Some spicy foods give me pain within hours (anything with garlic and I am in pain) but this varies from person to person.  Some cannot tolerate cabbage or broccoli - the barasica family can cause wind; and these foodstuffs you will learn for yourself the hard way - not an infection; just a nasty and painful reaction to certain food types.....east to mistake for an infection as the pain can be as bad.  My advice is to take high dose 20 billion Acidophilis every day (keep in fridge).  When you are in pain; be it from a reaction to a food; or from an infection - the less you eat the better.....and bland; bland; bland....white rice; white chicken; white toast etc clear soups or meal replacements like Complan or Slimfast - to give your gut a rest.  Never over eat.  You will get pain quite quickly.  Better to eat little and often.  There. That is the advice from me; others will have different stories to tell - but there is generally a common theme of no seeds, nuts, pips, skins, heavy spices - and try foods in every food group outside those items with caution til you know your gut is OK with it.  Lots find they cannot eat onions; but I am so far fine with them.  The illness is never the same from one person to the next - but the pain is diabolical....!!
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  • Posted

    Thanks Christine.  At the mo I am 3 days into the drugs but it's been an awful journey so far.  Never coul tolerate onions or raisins but loved them both.  I have been taking those since November and another brand I got in the states while I was there.  I think the pred foam really set it off but maybe after all this time I may get an answer finally since really I haven't stopped bleeding since May 2015. I did manage a tin of spaghetti at lunch but have had mashed potatoes with a bit of marg and a few creamed crackers but ugggg.. It's not sitting well! Oh well... At least I'm still sitting albeit feeling full on very little but still the brain has said its not enough!
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  • Posted

    When my mother was very ill; she had eaten little for days but then asked for a jacket potato (in hospital) that I could mash for her.  I said it was too heavy for someone who had eaten so little.  She insisted and we mashed it well - but it was still a potato and as such was way too "heavy" for her - to say it did not sit well was an understatement.  She had the most awful gut pains for many hours.  It really is best to stick to the lightest foods possible when the gut is inflamed - boiled or scrambled eggs rather than "heavy" potato or pasta.  Or liquid meal replacements. Clear soups and broths. We all have to learn; sometimes we take the advice of others; sometimes we suffer because we make the wrong decision about what we thought was best for us; and get it badly wrong.
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    • Posted

      Thanks Christine... Definitely staying away from potatoes.  Didn't have the pains like your mum had - I'm so sorry your mum had those terrible pains- mine was that nauseous feeling.  I've had a few digestive biscuits and they seem to be sitting well and have helped with that need to chew something...but slim fast with lactose free milk has always made my brain want more after five minutes!! Though scrambled eggs sound nice since I can tolerate them again! (I had a sensitivity to egg yolks many years back but my body hasn't minded them for the past few years albeit they raised my cholesterol a bit!). It'll be a while tho before I can look at chicken soup tho!  That 'boughten' stuff did not stay down.  I did say to my hubby that I miss his mums chicken soup! 🙂  Thank you thank you. I really do appreciate your help in excercising my restraint! 
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  • Posted

    This pred foam, did that go up your back passage? I was given stool pills, voltatol once in er. I was in pain to start with but it was 10 times worse after. I don't think it's a good idea, rectal medication in diverticular disease. It really, really hurt bad
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    • Posted

      yup ... only managed four days of it and the burn was right at the point of where the flare happened. I bled heavily... bled clots just plain old bled. It was a few days before we went on a long weekend (I defo wasn't not going to go) and I could feel stuffing tearing past the area - even at the specialist's the Thursday before last where he had wanted to do more tests rather than anything. Since being diagnosed in August of colitis.. (no mention of diverticulitis).. nothing had worked  Problem was I'd only seen one of the specialists at the hospital once since the diganosis (with the exception of a quick in and out we got to do more tests on the thursday before the ER) and when the nurse decided to play doctor and told me to keep taking the other medications even though they weren't working and making me worse as it was all in my head.  The pentasa was up the bumb too (my goodness.. have never had so many things up my bumb!) The Octasa made me gain weight and I experienced skin rashes and a general feeling of being really unwell.... (I learnt some things in that ER!!!)

      I've just taken the last of my tablets... somehow managed to mess up missing one despite being really ummm.. anal... about taking them and now I'm very concious of the spot and it feels also a bit higher... and while there is the occasional dull ache, the stabbing pain is gone albeit the niggle in the RH side is still there.  Still experiencing the sensation of shortness of breath which seems to be less when I'm on my tummy and trying to stretch and while somewhat nauseated, I have been able to eat a bit.  Scan is Wednesday though calling the hopsital today to make sure this is normal now that I finally have a contact number albeit to the doc I saw in emergency last week.

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    • Posted

      What scan are you having? Ct? mention the shortness of breath to your doctor. I was found to have water on my lung on the right where I also had my gut inflammation. They never told me about it. I read the results myself. I do remember being short of breath. I think if you are short of breath on rest ie just sitting down you need to call up and be seen sooner. Its a sign of emergency. It may be water on lung but God forbid its a clot. The reason you feel it less lying on your tummy is because your lung expansion is optimised lying on stomache. This is pointing more to water than clot. however, you have your doctors number. Call and describe symptoms if new since last consultation.
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    • Posted

      I did call this morning and was supposed to get a call back.  Even emailed my surgery with a letter though this has been on and off since November actually when they heard the first rattle in my lung after I passed out on the train and made everyone late for work.  They did take Xrays last Monday and the CT is wednesday but they didn't say what scan it was. I can only assume a GI one because it's something you drink.  Freaking hopsital has been a nightmare.  I will mention it before the scan if the hospital and surgery doesn't bother to get back to me. I only got the number by 'accident' since the IBD nurse was runninga good blockade to get to actually see the doctor. (My GP had to write) The last consultation was about two minutes.. i.e. they wanted to check the 'colitis' issue further which is Monday coming.  I'll let you know what they say... taking my hubby with me and he's not gonna hold any punches!
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    • Posted

      Low hb can also cause breathlessness. Have they drawn any blood on you? You mentioned you had blood loss from the colitis. Its a shame you don't get more prompt treatment and diagnosis.
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    • Posted

      They have but haven't said anything.  Still not heard from the specialists secretary from yesterday (though she did say she would call) but did get a prescrip from my doc.  Though last night I experienced a searing pain in my right side which moved up and around to my chest and it was off to emergency - it took two hours until I felt I could even catch my breath. Apparently the infection is gone so I don't need the other course despite still bleeding..... lungs seem clear and he thought it was my body's reaction to the pain and suggested stronger pain killers. I have opted to be just a paracetemol 'junkie' for the moment as I don't relish becoming bunged up.  At least the CT scan is tomorrow and he thinks if there is anything it will show up. Fingers crossed I get to the bottom of this!!!! :-)
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    • Posted

      To the bottom you will get ; ). Hang in there. I hope your scan goes fine today. Diverticular disease can be tricky, ten times trickier combined with colitis. Good luck today,!
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    • Posted

      Thank you. It was much easier than I thought for the scan.  I thought I'd be moving in and out and in and out and it was only like a couple of times and then it whirred like our dishwasher.  Another test Monday and am supposed to see the specialist (who wanted to do this test - sigmoidscopy) right after.  I did eventually hear from the hospital late last night... the nurse I've been dealing with - even though the secretary said she'd call back the day before called... and said the message you left for the doctor... well actually it wasn't left for that doctor but the other one I'd seen who wanted an update. She even mentioned an appointment this time rather than blocking me from getting one.  Grrrrr... she's been a right one. If I'd had an appointment back the end of October last year - this wouldn't have dragged on.  (Sorry for going off the deep end! :-) )  Anyhoo.. hopefully brighter days ahead huh! I've still got a lot of things on my bucket list that might scare me the way I've been going rather than not doing these things and still doing it - if ya catch my drift! (mischevious grin!)
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    • Posted

      HEY! Me again! Well it seems the doc has said it is now colitis (along with I assume also the initial  DD).  Apparently the pentasa wasn't doing its job and while it's got worse he's said my symptoms are atypical but it's idiopathic - whatever that is. (I call it the 'idiot's disease' which is what happened with my eye 8 years ago and the docs there never were able to determine what really happened)  The talk afterwards with him did not happen as promised. sad  I've been put on predisone - have to now chase for an appointment as it's only 28 days of high dose if I don't hear from his secretary cause as I understand it - you don't come right off the stuff cold turkey.  Anyhoo.. let's hope this stuff works huh! :-)
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