Hi, I haven't posted since before my surgery which was Nov 14. (8 weeks ago.) I spent 13 days in the hospital with a few complications but came home the day before thanksgiving. I have been adapting well to the iliostomy bag, but recently during the week off Christmas I was having a hugh pressure in my rectum as if I had to go and I was developing UTI symptoms. I ended up in the emergency room on December 28, with an acute UTI which they started an IV of ciprofloxacin and inserted a folly catheter. I was told to go home with catheterand given a prescription for ciprofloxacin for seven days.The next evening to my surprise I had diarrhea coming from my rectum with the most foul smell. The next morning I was scheduled to have my port put in and as iawoke in recovery my rectum released once again so much diarrhea, that I was saturated and they had to change the whole bed. The odor was horrible. It persisted and on Jan 1st day and half later I was in urgent care at Sloan once again. They checked for C-Diff, ,a cat scan, and I was admitted. The fluid coming out of me was not mucus...it was light brown and consistent with pea soup. They finally told me I have what they believe is DIVERSION COLITIS. And that this could continue for any length of time, and stop or start at any given time until my reversal. Which is likely not to be until the end of the year. I start chemo this friday,as it had to be postponed until they figured this out. PLEASE has anyone had this, does it so and start at will. The smell has now gone away but it is still happening.off and on.
singinac
Jan 15, 2014 9:17 pm
scotiaman
Jan 17, 2014 10:39 am
Hi there...can't say I am familiar with the term diversion colitis but I am with the the situation you find yourself in as just about anyone who has had a similar surgery has experienced some degree of this pressure and discharge, especially if the remaining rectum and colon ( assuming some remained after the surgery) continues to experience colitis. The discharge is likely some variation on a creamy reddish mud soup and it stinks. It is comprised of mucus, water, blood cells, and dying off flesh cells from the remaining intestinal track. Sounds pretty yuky but all iiving cells regularly replace themselves so they get added to the soup down there and will build up mass until they trip the anal release valve...and then...if your lucky...you have made it to the bathroom...if not...if you are wearing slacks tie off the pant leg but if you aren't and are going out I would suggest wearing a DEPENDS adult diaper. Prior to my having a rectum removal I experienced this quick release trick of nature that doctors tend not to discuss with you several times...it can create quite a pressure, but the flushing processes within the remaining plumbing continues after surgery. It's just a real pain when it decides to trip the anal switch walking through the mall cause it's about impossible to hold back .... Good luck ..hope this helps...and keep a good sense of humor about it all...
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Posted by: freedancer
In both of my cases, I had no choice. It was surgery or be put 6 feet under! I thank God that He has been with me all these times. Without Him, I never would have known what to do and might not have gone to the hospital when I did. I don't know if you have had your surgery or not yet but I hope you will hang out on this website when you are done. I have learned a great deal through the people here and it is so great having others who have had the same thing done and been through what you are about to or have gone through. The only thing I have turned down is a reversal of the ileostomy. When the doctors did the emergency rebuilding of my original ileostomy this last February, I told them I did not want to go through this again. My doctor told me at that time that I was no longer a candidate for the reversal. In a way, I was very relieved. The last three years of my life have been a nightmare for me. I do not want to go through any of it again. If you wish to be rehooked up and they say you are a good choice for that, research it carefully. Every surgery I have ever had except for Old and New Maxine and the emergency surgery on my broken foot, I have spent weeks researching. I recently had my C5 C6 disk in my neck replaced with an artificial one. I went to my pre-op with 2 pages of questions for the doctor. I knew everything that they were going to do and could talk intelligently with them. I always try to research my adversaries! Don't cancel your surgery. It is nice not to have to suffer any longer with horrible pain. We all had to change a few things around when we had our surgeries but in the long run, most of us are glad we did it. I know I am. Good luck to you!
nbaker
Jan 22, 2014 3:26 pm
I have had my colostomy for just over two years. I started with diversion colitis about three months after my surgery and formation of the colostomy. Diversion colitis is caused by the lack of stool passing through the unused part (remaining part) of the colon. When stool passes through the colon it actually keeps the colon healthy. The lack of stool passing through the colon can cause colitis due to, they believe, a lack of short-chain fatty acids. I do not pass a soupy substance. I pass frank, downright blood, sometimes fresh blood, sometimes a dark tarry clotty, tissuey blood, but still blood. And yes, it has a very unpleasant odor. Speak to you doctor about it. There are suppositories, Canasa for one, that can be used, as there are enemas that can be used. The bottom line though is first, read up on it. Google "diversion colitis" and you will bring up a multitude of literature and articles on it. Become educated about it and speak to you doctor to develop the most appropriate plan for your particular circumstances.
Good luck!!
Good luck!!
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vikinga
Jan 22, 2014 11:29 pm
Hi Singinac,
I have had an ileostomy since end of January 2012, then a redo in May 2012. I am here to tell you that this is NORMAL. With a bit of time and paying attention to the need (sensation, urge, etc) you will be able to get to the bathroom in time. I do.
When it first happened to me in the hospital I was freaked. Even the attending said" We'll have to let the doctor know about that" It looked like what you are describing. And yes..very stinky
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( All I got back from the doctor via the nurses was that it was normal. Normal?...well...welcome to your new normal. I keep an unscented neutralizer spray in the bathroom just for those "normal" occasions. It doesn't even happen every day. The most embarrassing time was in the beginning when my BF and I had dozed off after sex and woke up in it. He said.."What is that?" more out of concern for me, but completely rolled with the situation. I have made up my own "draw sheet" that we sleep with across the bed just in case of leaks from bag or emissions. Easier to whip that out than change the whole bed. Now I am more aware of the whole pressure issue telling me to go sit on the toilet for a few. Scotiaman, and Nbaker also fill in the details so I won't repeat those in my post.
Good luck!!!
Lisbett
I have had an ileostomy since end of January 2012, then a redo in May 2012. I am here to tell you that this is NORMAL. With a bit of time and paying attention to the need (sensation, urge, etc) you will be able to get to the bathroom in time. I do.
When it first happened to me in the hospital I was freaked. Even the attending said" We'll have to let the doctor know about that" It looked like what you are describing. And yes..very stinky
🔒 Login to see image
( All I got back from the doctor via the nurses was that it was normal. Normal?...well...welcome to your new normal. I keep an unscented neutralizer spray in the bathroom just for those "normal" occasions. It doesn't even happen every day. The most embarrassing time was in the beginning when my BF and I had dozed off after sex and woke up in it. He said.."What is that?" more out of concern for me, but completely rolled with the situation. I have made up my own "draw sheet" that we sleep with across the bed just in case of leaks from bag or emissions. Easier to whip that out than change the whole bed. Now I am more aware of the whole pressure issue telling me to go sit on the toilet for a few. Scotiaman, and Nbaker also fill in the details so I won't repeat those in my post.
Good luck!!!
Lisbett