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Toxic Megacolon

MarksKerry
Posts: 34
Joined: Oct 2006

Mark's docs are mentioning toxic megacolon -- and he seems to be presenting with more and more of the symptoms. Has anyone had it? If so, what was successfully used to treat it? I'm going to get up EARLY to meet with the doc during rounds tomorow. At any rate, if anyone has dealt with this I'd really appreciate your advice!
Hoping for the best, but preparing for the worst.... Kerry

pink05
Posts: 553
Joined: Mar 2006

Kerry,

I have never heard of this condition before. What exactly is it? I'd like to find out more about it. Good luck with the doctors. I will be praying for Mark.

-Lee-

MarksKerry
Posts: 34
Joined: Oct 2006

Lee
Apparently if your colon has been abused, which Mark's has been with the c. diff bacteria, profuse diarrhea for 11 days, and then the pseudomembranous colitis, it fills the colon with a toxic gas, which creates a distended belly, a raised temperature, and rapid heart rate and some other goodies. If you google it, you will find out more than you want. It appears that mechancially reducing the gas (Mark is working on that! :)) and steroids via IV are the direction to take. At least my kvetching to the nurses this evening have netted the onc on call to at least look at the x-rays they took earlier and yup, 'something is going on'. So, we are just waiting for him to consult with a GI guy and decide the next course of action. But at least somebody is taking us seriously! Sometimes that seems like the hardest thing of all.
K

pink05
Posts: 553
Joined: Mar 2006

Wow,

I never knew that could happen. My dad also had C-diff right after his surgery. It got pretty bad before we knew what was causing all the diarrhea, nausea and higher temp. I phoned the nurse at the surgeon's office and told them I was worried, but they told me it's normal after surgery and that since my dad was older, it would take him longer to recover and that was the reason for the problems he was having. I had to keep persisting and finally, I got a call back from one of the surgeons in the group. He was the one who finally figured out my dad had c-diff. Pretty scary. If I wouldn't have persisted, what would have happened? I know exactly how you feel. Keep the faith. Mark will need some time to recover from this, but he will get there.

God bless,

-Lee-

NWmom
Posts: 80
Joined: Nov 2006

Hi Kerry,
Not good news to hear. We haven't personally dealt with it but I know a little about it due to my daughter's history. Have they put a tube in to help with the distention? Is he already on steroids? They need to get this taken care of ASAP. You need to make them listen. Toxic megacolon is very, very serious. They need to treat him aggressively and quickly. Call over to OHSU if you can't get a result with the docs at St. Charles. I wish I could give you some words of wisdom, but all I can give you is the promise of prayer on your and Mark's behalf. Please keep the updates coming as you are able. Feel free to email me via the CSN site if you need any info from the Portland/Vancouver area.
Peace,
Heather

MarksKerry
Posts: 34
Joined: Oct 2006

Heather
I'll be in touch via the site if the docs here don't pull through. The onc on call is consulting with a GI guy / gal. They are going to pull more blood work, but no, they haven't done anything for the distention yet, nor have they started the steroids. I'm nagging!!!!!!!!! Thanks for the OHSU suggestion.
Best,
Kerry

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Kerry,

Remember one and only one thing when you are grasping for help. HE WHO SCREAMS LOUDEST WINS!!!!! You really don't have to scream, I chose to kill them with kindness (grin em to death like davy crockett did is my choice). BUT it does work. You have to take control NOW. You have done your homework and know more then any of the nurses and probably some of the doctors. DEMAND stuff if Mark needs it. My cancer journey completely changed once I TOOK CONTROL instead of waiting for them to tell me what to do next. I asked way too many questions and my oncologist actually asks me things today.

No, he will not have a chemo treatment the day after Christmas. His innards are pissed and need to be calmed down bit time.

I goggled it and and now know enough to be dangerous. YOU GET UP and meet with the doc and make her/him talk to you!!!!!

I am sending serious vibes so you can get the answers you deserve. Please keep us posted honey and get some rest.

Lisa P.

MarksKerry
Posts: 34
Joined: Oct 2006

Oh you guys make me laugh and give me hope! The onc came in -- not our regular one, of course -- he said I'd been reading too much on-line! For blank's sake -- HE told Mark this morning he was considering this might be Toxic Megacolon -- what the blank does he expect us to do?! Sit around and wait for him to become one of the 20% statistics, and oh, oops, we're sorry! NOT going to happen on my shift!!!!! I'm home -- finished wrapping all the Christmas stuff - Mark had massive blood work drawn, they've started Flagyll again and added Cipro. They are also giving him morphine on demand for the pain. And one of the early AM visits will be from a GI doc. I am hoping and presuming that nothing awful will happen overnight, because yes, I need some sleep too. I left him nodding off -- left the nurses my cell number and said CALL ME if any changes. It always amazes me when we do know more than the docs, and YES we do! He has every symptom in the book for this -- like it is quacking like a duck and has pinfeathers, so.......I will be very loud tomorrow morning, in particular if Mark is looking even more pregnant. His belly is huge and hard as a rock -- 40 pounds ago he sort of looked like this, but not now! The onc did note however, that this was probably the end of chemo for Mark -- and I think that's just as well at this point. If, God forbid, he has a recurrence, we'll deal with it then. Until then we'll be model eaters - and this as adjuvant anyway given that he was IIa!
So, that's all for tonight -- I appreciate the pep talk and the courage. Never has Mark been quite so eager to fart!
Thanks to all
Kerry
And Lisa -- I am a woman who REFUSED to allow a necessary cesaerean to take place BEFORE 41 weeks 24 years ago yesterday! Ultimately, my OB GYN told me he changed his standard of practice because of me, so yup, I'll let 'em know!
K

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