Diverticulitis and Polycystic Kidney Disease

[Cordelia]

I was just diagnosed with diverticulitis. Apparently back in the summer when I was admitted with renal failure, I had an abdominal ultrasound and it was found that I had this. However, yesterday, I went to my transplant nephrologist for the first time and the first thing he asked me was how long I had this diverticulitis.

I knew what it was but no one ever told me that I HAD it. I was very shocked to hear I had this even though I have had stomach trouble with constipation and pain and just chalked it up to that it was the polycystic kidneys that were enlarged and causing me pain. It obviously explains my sensitivity to certain foods. 

Apparently this disease is quite common in PKD patients and I'm just wondering, do I need to worry about someday having to have a colostomy? I'm hoping not, I don't think my pain is really severe enough to warrant having surgery on my colon.

Anyone else have diverticulitis and what are your thoughts/views on it? Is it really anything to worry about? I was so taken aback I didn't get a chance to really ask the doctor futuristically what to expect. I'm almost 40 years old.

[Cordelia]

Has no one experienced this?

[monrein]

As we age, most of us will develop diverticulosis (as distinct from diverticulitis which is infection or inflamation of the little pocket).  You can do a google search about what foods to avoid..eg. tomato seeds, raspberry seeds, little things that can get stuck in the diverticula and cause problems.  High fibre is important as it helps to scrub the colon and keep things healthy.  The problem arises when the renal diet comes into play because many high fibre foods are also high potassium and/or high phosphorus.  My husband and I both have evidence of diverticulosis but we eat lots of fibre (he takes supplementary psyllium fibre as well) and avoid processed foods.  We have no issues resulting from the diverticulosis.

You might ask your doctor if you can take psyllium (like Benefibre...although it's way cheaper if you get it at a health food store or Metamucil)  to improve the condition of your colon.   Part of the problem for dialysis patients is that high fibre needs lots of water and obviously that can't happen depending on the mode of D.  Here's just one article that addresses the problem of diverticulosis.
http://www.theglobeandmail.com/life/health/leslie-beck/the-keys-to-avoiding-diverticulitis-fibre-water-exercise/article1517862/

[Cordelia]

Hi Monrein,

Yes, its rather difficult with the diet because I'm on a low phosporus diet. Thanks for the link

[Rerun]

I didn't know I had it either until I was in severe pain and it perforated so they had to do emergency surgery and took out 8" of my colon.  Then 3 days later they bring me a tray full of food and I ate it.  So, my advice is do not eat anything but liquids for a week.  My surgery split open and I had to have another emergency surgery and woke up with a colostomy.  I about died (literally)   I waited 9 months and had the take down surgery and was back to normal.  That was during my transplant life span and I still kept my transplant for a few years after all that business.

So, if they know you have it they can watch it and maybe do surgery before it is an emergency and maybe they can just control it with diet.

[Cordelia]

OMG, Rerun, you are very lucky you didn't die because of that happening.

I'm still upset that I wasn't even told about the diverticulitis when I had renal failure. That's when they found it.

[phyl1215]

Yes, I have it too.  I have trouble if I eat certain foods (which you will learn what bothers you) that bother me but no major trouble so far.  I just try not to eat much of strawberries, tomatoes, corn or popcorn...I do eat those foods but not often and watch how much I have and I'm doing fine.  Your Dr. should be able to guide you through this and answer your questions.

[Cordelia]

For years I haven't been able to eat corn. I understand now why I've had so many problems. I have a feeling I've probably had this disorder for many years and only just recently found out about it, through my transplant doctor.

Problem is, I love tomatoes and popcorn.