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Bad news from Colostomy

Rod


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Well folks i suppose it's hard to avoid illness at my age and it appears I haven't.

I managed to escape having a colostomy last year in Australia simply because I ran out of time but this year I had no excuse so finally had the procedure done on the advice of my GP from over a year ago. To cut a long story short I have been experiencing stomach aches and intermittent bouts of the "runs" for a while now and although they usually resolved over a few days but often left me feeling a bit washed out.

i couldn't pin it down to any specific cause or food it just came and went. I did have other tests over a year back which seemed to rule out anything serious like cancer or infections, or worms or parasites and my liver function tests were all okay so I wasn't too concerned. I had already given up drinking and smoking some years before so i just got on with life and when we returned to Australia earlier this year got the necessary referral.

The findings were Diverticular Disease with complications and fairly advanced. I should make it clear I havent seen my GP about the results yet but it's pretty depressing stuff that I read online.

There is a distinction between having diverticulosis and diverticulitis.
Diverticulosis just means you have little pockets that can become inflamed which is just painful or infected and then it's called diverticulitis.

It cannot be reversed or cured, high fibre diets are advised (I already have that but could probably increase my intake), it always gets worse, infection can be treated with antibiotics, sometimes hospitalisation may be required or in the worst case scenario, surgical resection of the effected area of the bowel to prevent/treat sepsis and obviously death.

I find it hard today to be optimistic about this but I need to speak to my GP to get more details.

So if any other members are sufferers I'd love to hear how you're doing and how things were for you.:Grimmace:
 
M

MBAmtloin

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My friend was diagnosed with that illness in the late 1990's. He needs a decapitor and used the washroom frequently.
proper diet will help and a positive attitude also will help you get through this.

i was going to ask you about Bali, Denpensar and other indonesian places you were, but that was off-topic on these forums.
 
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Hi Rod - really sorry to hear about your problem w/ colonic diverticular disease - I'm a retired academic GI radiologist (Wake Forest University in Winston Salem, NC) - gave lectures for years to my residents on GI radiology, including diverticular disease; performed numerous barium enemas over 34+ years on patients w/ the disorder and diagnosed its complications, including diverticulitis - so have some experience. Obviously, I don't know the seriousness of your disorder, but specialists in the area are your best choices, which include a medical gastroenterologist (many are sub specialized in certain GI areas) and a GI surgeon - I worked w/ many during my academic career. Hope that you can find the right doctors and good luck! Dave
 
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Rod

Rod


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My friend was diagnosed with that illness in the late 1990's. He needs a decapitor and used the washroom frequently.
proper diet will help and a positive attitude also will help you get through this.

i was going to ask you about Bali, Denpensar and other indonesian places you were, but that was off-topic on these forums.

You're welcome to OM me on that topic and thanks for your kind words.


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Rod

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Rod

Rod


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Thanks Dave, good advice and I will take that path.


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My auntie had this problem. She handled it well throughout her life and was very careful with her diet. There were times when it became full blown diverticulitis and it can be very painful and serious. Be sure and get medical attention quickly if that happens.
 

RavingMac

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Rod,
I don’t know anything about the disease, but added you to my prayer list and hope it all works out well for you.
 
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Rod, sorry to hear about the diagnosis. Gut issues are always distressing, because you can feel otherwise pretty good. Ask your doctor lots of questions and take charge of what goes on. It's YOUR body, don't let the doctors use it without you knowing what they are doing and what might be the outcomes, both good and bad.

Many years ago I was misdiagnosed with a pulled groin muscle that was really an inflamed appendix that ultimately had a pinhole rupture and as a result infected the entire abdomen. Fortunately I didn't lose any organs or pieces of organs, but I learned in the experience to ask questions and not to let the doctors get away with a hand wave. I even debated one about why I should have a procedure that he wanted to do and when he couldn't come up with a good reason I challenged that it was just "intellectual curiosity" and he agreed. Net result? No procedure. And now over 40 years later, it doesn't matter.

So be positive, inquisitive and take charge. That's my $0.02.

Will have you in my prayers, keep us up to date.
 
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Rod

Rod


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Jake, appendicitis is one of the most frequently undiagnosed or misdiagnosed conditions in the book. There is a very good reflexology method to diagnose appendicitis, very handy to know as a secondary means of diagnosis when unsure because it can be hard to positively identify. There is a spot on the right foot that becomes unbearably painful to pressure when the appendix is inflamed. Anyway I'm glad you survived and thank you for your concern, kind words and advice.


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Hi Rod

While I've no experience of your particular condition I do in handling serious, life threatening illness. Trust your doctors, ask as much or as little as you want about your illness as you want, find treatment that works for you and most importantly remain positive. Yes the prognosis can be very serious and you have to recognise that, but also know that many many people live and cope with this every single day.

Feel free to PM at any time.

Nick
 
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Rod

Rod


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Hi Rod

While I've no experience of your particular condition I do in handling serious, life threatening illness. Trust your doctors, ask as much or as little as you want about your illness as you want, find treatment that works for you and most importantly remain positive. Yes the prognosis can be very serious and you have to recognise that, but also know that many many people live and cope with this every single day.

Feel free to PM at any time.

Nick

Thanks Nick, I know you understand, everybody has been so supportive, we really do have a great little community.


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Rod, sorry to hear about your diagnosis. Others have given great supportive ideas here, especially about maintaining a positive attitude. I have an Aunt, the last one of her generation in my family, who has a few serious conditions to deal with. She was placed on home hospice and told that she had 6-12 months. Well, 6 months later, she has been taken off home hospice care, and is managing her own medications, with occasional visits from her doctor. I'm convinced that she is doing so well because of her positive outlook. Hang in there!
 
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Rod

Rod


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There sure is a lot to be said for a positive attitude. Thanks for your support and encouragement.��
 
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I don't know if it is allowed to ask--but do you mean from your colonoscopy? That's very different from a colostomy. Sorry if I got too personal.
 
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Rod

Rod


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No worries Nancy, I wouldn't have posted about it if I was worried about "personal" stuff. As an ex Registered Nurse I'm one of those people who talk frankly about topics at the dinner table that others might rather I didn't. So yes, I was diagnosed with diverticulosis as a result of a colonoscopy (an invasive internal investigate procedure performed under a general anaesthetic). I do not have a colostomy, yet. I say yet because in the worst case scenario that could be an outcome.


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Rod

Rod


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My friend was diagnosed with that illness in the late 1990's. He needs a decapitor and used the washroom frequently.
proper diet will help and a positive attitude also will help you get through this.

i was going to ask you about Bali, Denpensar and other indonesian places you were, but that was off-topic on these forums.

What is a decapitor???


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M

MBAmtloin

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What is a decapitor???

some bag he always mentioned about back then.
I tried looking up the term, but never had luck finding something i needed.
how are we today?
we had a cloudy day but no snow forecasted.
 
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No worries Nancy, I wouldn't have posted about it if I was worried about "personal" stuff. As an ex Registered Nurse I'm one of those people who talk frankly about topics at the dinner table that others might rather I didn't. So yes, I was diagnosed with diverticulosis as a result of a colonoscopy (an invasive internal investigate procedure performed under a general anaesthetic). I do not have a colostomy, yet. I say yet because in the worst case scenario that could be an outcome.

Oh **! Well that clears things up... I was a bit worried, yet confused by your initial post. So, I happen to know a bit about diverticulosis/itis myself since I have the condition and have twice had diverticulitis. I've been fortunate because I recognized the signs very early on (I work in healthcare and see it quite a bit) and was able to get it diagnosed and on antibiotics quickly for early resolution. I haven't had a flare-up in several years now, and afaik, no one knows what even really leads to them. I have been told by my GI doctor that previous beliefs that seeds and popcorn kernels can cause them are no longer considered factors.

As for high fiber diets, all fibers are not alike and my case complicates things greatly. I was finally diagnosed with IBS-C after my first attack of diverticulitis, and that set off some light bulbs for me because I've clearly had that my entire life. Living with IBS has absolutely been a factor in developing diverticulosis and I had to do some research into that and the food triggers, and it's been an ongoing process. But in my case, which is typical of IBS, wheat in particular and gluten in general are triggers (although oddly pasta made from Italian wheat is tolerable). Other triggers which are common include lactose (lactose-free milk is a-ok!), grapes (this includes wine!), peanuts, potatoes, tomatoes, coffee, and some others.

So, in your case, when you look at a high fiber diet, you need to consider what fibers are right for you. If you have IBS (there is diarrhea-dominant IBS also), then you have to take that into consideration, as well as eliminate the other triggers. Look into the differences between soluble and insoluble fibers. You say you are having the runs, so what works for you may be different from what works for me. I had very good luck in the past adding psyllium fiber husks to my diet, but the brand I was using (Konsyl) isn't available anymore and the ones more readily available here powderize the psyllium, which has not proven effective for me.

I'm still in the process of re-evaluating my own diet and one variation I've long read about that is frequently recommended for IBS sufferers is the low FODMAP diet. I suggest reading up on that. I did a 2-week strict trial of a diet that is derived from that to treat another condition that I suspect I have (SIBO) that is believed to develop as a result of long-term uncontrolled IBS-C, and the change in my bowel habit was nothing short of stunning. I'm more loosely following it now while I wait to talk to my GI doctor about it.
 
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Slydude

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Will keep good thoughts on your behalf Rod. In addition to the suggestion to ask your physician(s) lots of questions might I suggest that you write questions somewhere as they occur to you. I find that I can always think of questions I want to ask about/check out and then I forget to ask them when I'm in the exam room.

I went in for an appointment earlier this week and for the first time I remembered to use the Reminder app on my phone. I punched in a couple of questions before the appointment. This time I remembered the question without the app but next time I'm setting the reminder to pop up based on location when I get to the Doctor's office).
 

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