Polycystic Kidney Disease (PKD) Support Group

Helen,
There comes a time when the colon has been virtually destroyed by repeated infections and about the only way to avoid more damage and reduce the risk of rupture is to remove the most affected portion of the bowel. The diet with diverticulosis is a challenge; ideally we all eat a high fiber diet and never develop diverticuli to begin with. But for some people, the connective tissue in the colon is weak and will still cause outpocketings and when this occurs, sometimes high fiber diets can actually aggravate the situation, causing small seeds and nuts to get trapped in the diverticuli and irritate them and possibly cause an infection. It can become a damned if you do, damned it you don't situation, especially one the diverticuli have already formed and repeated infections have already occured.

I don't know if your friend has tried absolutely everything in terms of diet (high fiber or low fiber; active cultures when she's on antibiotics for an infection, lots of fluids to help keep things moving along). And I know it sounds drastic, but sometimes there really are no other options to surgery and the risk of leaving the damaged portion of the bowel in the body is more dangerous than removing it (future infections, possible rupture and sepsis, etc.).

My brother had this surgery done 20+ years ago (he was 22 at the time; young for this type of surgery, but then again he had been having severe abdominal problems since he was a kid). He was finally diagnosed with diverticulosis after about 10-15 years of severe pain, bleeding and repeated infections, problems that had been escalating in severity from the time he was a young kid. He consented to surgery. However, he was absolutely adament that they not remove so much as to require a colostomy bag; he's incredibly active and this would dramatically reduce his activity level as well as wreak havoc on his self image. The surgeons didn't agree at first due to the amount of damage in his colon, but he was absolutely adament, and specifically wrote what they could and couldn't do on his surgical consent form and also wrote the instructions on his lower left abdomen the day of the surgery. Needless to say, the surgeons complied, he had a very large section of his colon removed, woke up with all the other working parts intact, and has had no problems with diverticulosis again.

Your friend needs to have a very long and adament conversation with her surgeon and GI specialist about exactly what they are planning to remove and if she adamently does not want to live with colostomy bag, she needs to speak up now and tell them this up front. Plus she needs to write it in large letters on the surgery consent form and on her lower left abdomen on the day of the surgery (For those who wonder, yes, you can write notes to the surgeon on your body on the day of surgery...if you use a permanent marker the words will not wash off when they prep you for surgery so the surgeon will still be able to read the note and your skin will still be clean and sterile for the surgery...the markings will just wear away in time).

I wish her well.
Ruth

Spidey,
Ruth has given excellent medical advice about this. I wouldn't say that this is only marginally related to PKD, because diverticulosis and diverticulitis, in particular, is common with PKD. I have it. My mom (even though she does NOT have PKD) had it to the point where her bowel perforated and she had surgery after surgery, colostomy bag, everything.

And again, as Ruth said, the "high fiber diet" isn't always the best thing. My mom was told to eat a very bland diet with no fiber. It's hard to understand. Yes, Ruth, damned if you do and damned if you don't.

My mom was lucky in that the colostomy was able to be reversed after a few months. If they remove 8" of colon, will she be able to go without a colostomy bag?

I have problems with diverticulitis, as well. I've chosen to ignore the problem and bury my head in the sand--not the wisest choice, but all I'm able to do at the moment. In dealing with the pain and the other difficulties of this, I would say that your friend may be very lucky to have a doctor looking out for her and wanting to give her the best life possible, free from pain and bowel problems (embarrassment not the least of those problems).

Best wishes to her and to you--

I agree with Ruth and Lil! This disease can have serious complications if left unchecked. My grandmother, who had PKD, died at the age of 49 from a ruptured diverticuli. She had been on dialysis for 14 years with minimal problems, then one day she complained of severe abdominal pain. They took her to the hospital, realized she'd had a rupture and did surgery. Unfortunately for her, the years of dialysis had weakened her heart. She was unable to fight off the ensuing infection and died from heart failure 8 days later.
I've kept this information in my head, nearly my whole life and throughout my issues with my bowels, have mentioned it numerous times with my docs. No one has felt the need to test me, so I just truck on and hope it's just IBS. The point is, it's a good thing that she has a doc looking out for her and was concerned enough to go looking for the problem. I don't know that I'd want to live with a colostomy either, but I do know that I'd rather go that route than the risk the potential for something worse happening.
Good luck to your friend.
Tami