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Bleeding from rectum, i need help

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Ulcerative Colitis
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Posted 10/27/2015 9:22 AM (GMT 0)
Short story -

After an uncontrollable flare I had my colon out on 10/20/2015. I have an illeostomy. They left about 7" of my rectum in and closed it up at the top. My rectum was one of the problem spots. After surgery I bled a little from my rectum. I was putting out about 1/4 cup of liquid with a light pink hue to it. Now a week later the amount of blood has increased along with some mucus. I am also tapering down my prednisone and am currently at 30mg a day. At 40mg is was little to no blood. Seems like 40 is my stop point, dose wise. After the surgery we tried a single mesalamine enema. Mesalamine makes my bleeding worse.

My question -

What has worked for some of you folks? I want to call my GI doctor today with suggestions. I am not against some humaria to get that last bit of rectum in to remission. My last flare was seven years ago. Remecaide got me in to remission and smoking kept it there. This most recent flare started about 6 months after I quit smoking. What is the point of starting smoking again when I had my colon out.

I had my colon out so I would not have to smoke my disease in to remission or use biologicals.

The surgeon said he left the 7" of colon in because it kept everything in my pelvis intact and my small intestines would not bunch up in the six months I have opted to wait and see if i want to do the take down surgery. I do not mind the ostomy. As a matter of fact I find it quite liberating not to have to use the restroom or worry about eating a piece of popcorn. I am close to 50 and could have the bag for the rest of my life with no issues. I like it.

What have you used to get that last peice of stubborn rectum to stop bleeding? I do had some cortifoam. Should I give that whirl? Going back in for surgery is out of the question until I can build up another 3 weeks of vacation at work, which will be about 8 months.

Thank you so much for reading this.
Posted 10/27/2015 10:17 AM (GMT 0)
Have you considered nicotine patches? A lot of former smokers and even non smokers have had good results with them. Obviously, talk to your doctor about options, but if smoking kept you in remission, the patches are a less toxic way to get the same results.
Posted 10/27/2015 10:38 AM (GMT 0)
Try rectal medications. Cortifoam or other steroid enemas but the problem is that Those will stop once you are off and you need a plan. If you can take 6mp or imuran and take cortifoam to help bridge the gap till it works that would be best.
I'm not sure why they didn't take out your whole colon because that's not common with uc especially when rectum is in active inflamation. Sometimes people do it when they want to have children naturally. but I think it's safe to say that that is not the reason in your case. If you could have the rest of if removed it would probably be best.
I don't know how large your company is but there is something called fmla and that would require them to keep your job while you had surgery and recovered.
I hope you get well soon.
Posted 10/27/2015 3:01 PM (GMT 0)

Dikid said...

I don't know how large your company is but there is something called fmla and that would require them to keep your job while you had surgery and recovered.
I hope you get well soon.

I have been in the same workplace for 13 years. It was a private radiology practice. We were just bought out by a hospital august 1st and we have to wait 6 months before we qualify for FMLA.
Posted 10/27/2015 11:25 PM (GMT 0)
You can apply for an accommodation under the American with disabilities act. I've taken several leaves through FMLA during the last 18 months and haven't worked enough hours to qualify for intermittent FMLA. I have applied for intermittent leave through the ADAA. You should look into it.
Posted 10/28/2015 1:09 AM (GMT 0)
I would have surgery to remove the rectum and whatever part of the colon is left. People with UC have those parts removed all the time and there is no big issue with the stuff you mentioned. Was your surgeon a colorectal surgeon? I would go see a top colorectal surgeon asap.

I can't imagine a surgeon thinking it's a good idea to leave part of the colon and rectum when a person with UC has surgery. it's almost negligence in my opinion. There is no way in hell you're going to end up in any better shape with the surgery you had. The whole thing needs to go. now you have an ostomy and you still have UC. It makes no sense to me to have an ostomy and still deal with UC symptoms. I had surgery and UC hasn't been on my mind since - because I had the whole thing removed. What happened to you was a very bad decision on the part of the surgeon. I would be angry and I would get a second opinion. I would get the records reviewed too. Something doesn't sound right.

Another thing to consider, they ususally do not do the takedown at the same time as creating the pouch and removing the rectum. It's 2 more surgeries. I hope the surgeon was clear wtih you about that. It's only 2 steps when they create the pouch during step 1. Though, thinking more deeply about your individual situation, you wouldn't have a pouch if he left your rectum. I hope he's not thinking about reconnecting you to what you have left? that would be another big mistake...
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