Worried and new to this disease.

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4 weeks ago admitted to hospital and had a diagnosis of diverticulitis. Was on intravenous antibiotics and oral ones once home for 2 weeks. Was starting feel beter, but with persistant lower back dull ache, which eventually eased. Then 4 days ago started to feel sore in lower stomach, not sharp spasms pains. Still eating, still going to toilet regularly. I have no temperature. Uncomfortable to walk around too much znd bd on my feet too much. Booked in for a colonospy in 5 weeks. Surgeon has given my hardly any info, told me to eat what i liked, tho i have been a fare careful not too much fat or spicy food. Do i just put up with pain and hope it goes away, or shoould i be concerned and go to hospital, my doctor (who i am sure has just left to practice up north) or surgeon. Any adviced would be appreciated.

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11 Replies

  • Posted

    Hi Karen sorry you are still suffering Im fairly new to this disease myself having been diagnosed by way of colonoscopy in April. I do know that it can take months and months after a flare to recover completely it took me 5 months to get over mine and I wasn't hospitalised or given antibiotics. I have changed my diet and now just eat little and often which has helped me. This is a brilliant forum and you will be given lots of good advice I know I wouldn't have survived the stress of this awful disease without this site.

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    • Posted

      Thank you for your reply, glad i have found some where i can get some information that isn't contradicting itself. Think a life changing diet is in order, tho have always eaten fairly well and follow the 5:2, not for weight loss, but healthy living. Seens like a lot of trial and error.

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  • Posted

    Karen I'm new to this awful disease too. Had a colonoscopy and have been told I have severe diverticulosis with scarring and a narrowing of the bowel. I've now got to have a virtual colonoscopy on Friday so they can see the rest of the bowel as they couldn't get the scope through any further. Like you I have been given no info on what and what not to eat so did my own research. My pain only went yesterday (the half bottle of red wine for Xmas day probably helped haha). I'm taking 2 sachets a day of fybogel, very important to keep your bowels regular. Tastes of orange but it's like wallpaper paste in consistency. I'm taking multi enzyme tablets which do work in taking away the pain. They make your body break down the fat, protein and carbs more efficiently. I'm also taking termeric which is a natural anti-inflammatory for your gut. Don't eat seeds, nuts, sweetcorn, popcorn or anything with skin on it, low fat foods preferable. Keep a food diary and once the pain has gone, make a note of anything that makes it flare up again and then remove it from your diet. Hope this helps, It's awful isn't it? Sue

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    • Posted

      Thank you so much will start looking into the the fybogel,enzeyne and termeric, anything to make tbe pain go away. Vetting frustrated. Best of luck for Friday. Have tried the drinks for pain, maybe not drinking enuff haa, will try again.
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    • Posted

      Drinking lots of water in the Summer isn't as much of a struggle as it is in the Winter! Not looking forward to Friday, but it has to be done. All the air blown into your bowel doesn't help the after pain one bit, so no doubt it'll be back to square one again pain wise for a few weeks, until my large bowel settles down again . Hopefully this will be the last test I have to have. Do try the termeric and multi enzyme tablets all from Holland and Barrett. Fybogel is a must to keep your stools soft and easy to pass. This horrid disease has to become a way of life as I'm now discovering. Best wishes, Sue

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  • Posted

    Hi Karen

    Sorry to hear you have been stricken with this disease.  I have been living with it for over 16 years and totally agree with Susan and Christine's comments.  I am guessing from the time of your post and the treatment you received that you are probably based USA or Canada.  I am UK and here they treat the disease very differently.  But one thing is common to all doctors - unless they have the disease themselves, they have no idea, and just hand out general platitudes.

    Everyone reacts differently to this disease and what suits one does not suit another.  Although they say "eat anything" that is not strictly true.  Most of us have trigger foods which make our symptoms worse.  The ideas of food diary and eating little and often are what most of us practice.  My triggers are gluten/wheat and full fat.  But for others it's all sorts of things.  I try and be sensible, and avoid insoluble fibre like skins, bran.  But I can actually eat corn, which others can't.  I cook my food well and chew thoroughly.

    The Fybogel soluble fibre supplement is what I have been prescribed daily (Metamucil in USA).  It should be mixed with 12 fl oz water and chugged down immediately, before it turns into the slimy wallpaper paste Susan mentioned.  It is meant to start working in the stomach and intestines, not the glass.  Others find their symptoms worsen with stress - you worry about the pain, it makes the pain worse etc.  A vicious circle.  So I would add lifestyle diary to food diary.  A bad day at work, kids playing up, domestic problems, that sort of thing.

    As for the pain, it unfortunately can take months to go, as your insides heal, with good and bad days.  Once the infection has been fixed by the antibiotics, the insides are still inflamed and tender.  After my first flare it was about a month, but in August 2016 I had 3 in quick succession, and it took a year.  I still get minor niggles.  But initially the pain prevented me from bending, lifting.  As you have no temperature, and are toiletting regularly, I would thing the infection has gone and you are just left with inflammation. The normal treatment initially is to go back to fluids for 48 hours.  If it worsens, go to the doctor, but most of us find that does the trick.

    A colonoscopy is done after the infection has been given a chance to go, hence the wait.  There are plenty of posts here to give you a general picture of what to expect.  Experiences vary - there is no way of knowing in advance and it depends on the location of the diverticula and how you are made inside.  I would just say that people who had no problems tend not to post!  If for some reason the colonoscopy cannot be completed - in my case due to the location of my diverticula - there is the totally painless CT scan as an alternative.

    It's rotten being ill over Christmas but I hope things soon settle down for you.

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    • Posted

      I am one of the ones that had no problems with my colonoscopy I opted for sedation and can honestly say that I was waiting for it to hurt or be uncomfortable but it wasn't and I was surprised when I was told that it was over. I am 5.2 and very slim so was thinking it would be worse for my but it was fine.  I personally have tried fybrogel but it wasn't for me as it caused me to have a lot of pain and bloating so my gp prescribed Cosmocol and it has worked fine so its trial and error, I would be a bit worried to take enzyme tablets but Im probably over cautious. I always cook from scratch and do not eat red meat anymore just chicken and fish I also eat lots of homemade soups.

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    • Posted

      I too am a homemade soup fan.  I make big batches, blitz them, then freeze, so I've always got some to hand.  It's good to know that there are alternatives to Fybogel - as you say it does not suit everyone.  Managing this whole disease is just trial and error, then sticking to the plan.  I'm no saint, and when I fall off the wagon, my insides remind me!

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    • Posted

      Thank you Felinia, for all your great tips and advice, I'm from Australia lol, still trying to get my head around it, will take it all on board. So used to enjoying a large range of food, obviously a change is needed 😒

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    • Posted

      I am a homemade soup fan also! I make big batches and freeze ... what's BLITZ?

      Felinia, when you say "trial and error" that is so true.

      Seems our innards have a memory of an elephant! LOL!

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  • Posted

    If I have any pain and feel a flare-up is on the horizon, I switched to liquid diet for a few days. Diagnosed July 2017 and have had only 2 flare-ups since. I stayed on liquid for several weeks after being diagnosed in 7.2017. I was afraid to eat anything. I watched what I eat. No seeds. My portions have changed - I don't eat near as much as I once did. Good luck.

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