Post transplant diverticulitis

[WishIKnew]

Hi all, it's been a while and, over all, I'm doing great!  I'm 3+ years post transplant now with no major complications.  However, I now have been diagnosed with diverticulitis (1 acute attack) and told that the recommended treatment for us lucky immuno suppressed folks is surgery.  Can you tell me if that is consistent with what you've experienced.  Pros and cons to surgery as you see it?  Thanks in advance for your thoughts!

WishIKnew

[Rerun]

I had it and did have the surgery.  My advice is do not eat solids for 10 days.  They will cut out the bad part of the bowel and reconnect it.  It has to heal and as a transplant with the drugs we or I did not heal well.  They gave me solids on day 3 and my bowel split and I had to have major surgery and woke up with a colostomy bag and 9 months later had to have the reconnection surgery.  The surgery would have been fine if I had not eaten.  But, the idiots put it in front of me and I (idiot) ate it. 

Glad you are doing well overall and thanks for checking in.  Great hearing from you.

[cassandra]

Lovely to hear from you, and lots of luck with the surgery too!

Love, Cas

[MooseMom]

I know nothing about diverticulitis.  Why is surgery recommended for immunosuppressed patients?  What is the usual treatment, and why is it bad for us?  Just wondering!!

Glad to see you!

[WishIKnew]

Hey, Rerun, Cassandra, and Moose Mom - it's nice to be remembered!  I hope you are all well!

Moose Mom, Diverticulosis, as I understand it, (and feel free to add to my understanding anyone who knows more or can clarify 'cuz it's all new to me!) are little pouches that protrude from the colon and "stuff" (Diverticula?) can get in these pouches.  If this happens and the "stuff" becomes infected or causes infection it is called Diverticulitis.  I had a CAT scan recently to determine if I have another hernia and Divertulitis was found.  (and a Sports Hernia)  Ever since transplant I've had what I lovingly call an angry stomach which I accredited to the medications.  Apparently that is or has lead to Diverticulitis. In "normal" people they do not do surgery and remove the affected part of the colon unless there are several major issues, but in us "special" people they recommend the surgery right away because of fear of infection on our immuno suppressed bodies.  So....

Thank you Rerun for the advice.  I don't want another surgery, regardless, but my fear of the possibility of a colostomy bag is major and your story solidifies my resistance.  So, as I progress through the maze of additional testing, to rule out, say, colon cancer...sigh...I will continue to resist the suggestion of "this simple surgery".

As always you all are a welcoming bunch and a fount of information!

 

[MooseMom]

WIK, my dad had diverticulitis years ago, or maybe it was diverticulosis as I don't remember him dealing with an actual infection.  Anyway, I do remember that he had to be careful about what he ate, ie no foods with seeds so that they wouldn't settle into the "pouches".  I wish I could remember more.

I can understand the concern about infection, but surgery sure does seem to be a particularly aggressive route since we all know that cutting you open brings all sorts of risks of infection.

Whatever the docs may say, in the end it is your decision and, it seems, not a decision that has to be made immediately. 

Let us know what you find out and what your thinking is on this.  I'm eager to know!

[Jean]

I was in the hospital for a week with diverticulitis. Very painful. The surgeon immediately wanted to do the surgery and put in a bag. I asked her if there was any other way. She assumed I would still want the surgery and kept me on no water and no food for 4 days. On the 5th day they did another cat scan and the colon area was almost completely healed. When I went to my primary a few weeks later, he told me I was very smart not to have the surgery, because it was the first time it had happened to me. That was almost 3 years ago and I have not had another. So far, so good. Of course I am not post transplant, so that may be another story for you. I wish I could help you more. I hope you do watch your diet, I did for almost a year and it does help.

[jeannea]

I always heard diverticulitis was more common in men. In our little unscientific sample it is not.

It sounds like a hard decision to make. Keep asking questions. I hope you can feel better soon.

[WishIKnew]

I had another CAT scan this morning to determine it the diverticulitis has calmed down enough to let them proceed with the colonoscopy.  Hope that it has so we can get this party started.  I hate waiting and wondering....

[Rerun]

It would be a simple surgery.  Just do the liquid diet.  My problem was I was in Davis, CA and the kitchen help didn't read or speak English so they sent me a tray of food and I ate it not knowing I shouldn't.  Now, you know.... don't let anyone bring you food.  You can live on broth, tea and jello for 10 days.  Also, no dairy for a good while because you son't want gas blowing things up.