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New ileostomy bleeding from rectum ??

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Posted 1/8/2018 5:07 PM (GMT 0)
New to this forum was on the ulcerative colitis forum part
I had a bad flare since June 2017 serve bleeding and 15-20 bowel movements a day . After 5 weeks in the hospital in November / December they decided to do surgery I had my whole colon removed December 12 with the hope to create a Jpouch in 3-6 months .
My concern is my bleeding from the rectum now at first it was once s day a little mucus and blood. Now it’s 2-3 times with the urge and blood . Not the pouring blood like I used to have with my UC but enough to settle at the bottom of the toilet and then float on top .
They left my rectum so I am assuming my ulcerative colitis is still active there . I put a call in last week plus this morning to my surgeon. And I am also waiting to get in to see a new GI .

Has anyone else had this issues ??

47 year old female
Colitis since I was 23 off and on
Remission from 2009-June 2017
50 mg prednisone now down to 10
Posted 1/8/2018 5:47 PM (GMT 0)
It's extremely common to have proctitis in the remaining rectum after the first step of j-pouch surgery. Since you were so ill, they probably opted to do a 3 step procedure. I had three steps and I was fairly lucky after the first one. I didn't have bleeding or urgency, but I had to empty the contents of my rectum a couple times a day. It was mostly mucous. A lot of other j-pouchers I know who had 3 steps had severe proctitis after the first step. Some said they were nearly as bad off as they were with UC, but the positive side is that after the 2nd step, you no longer deal with proctitis. The bad side, after the 2nd step, you have a loop ileo, and the stoma is much more difficult to deal with for many. You will get through it though. It's a lot when it's happening, but once it's done, it's all in the past.
Posted 1/8/2018 10:57 PM (GMT 0)
I had that about a month after my first procedure, but the created the pouch and gave me a ileostomy at the same time so it was expected. Def worth giving the doc a jingle though. How are u otherwise?
Posted 1/8/2018 11:07 PM (GMT 0)

notsosicklygirl said...
It's extremely common to have proctitis in the remaining rectum after the first step of j-pouch surgery. Since you were so ill, they probably opted to do a 3 step procedure. I had three steps and I was fairly lucky after the first one. I didn't have bleeding or urgency, but I had to empty the contents of my rectum a couple times a day. It was mostly mucous. A lot of other j-pouchers I know who had 3 steps had severe proctitis after the first step. Some said they were nearly as bad off as they were with UC, but the positive side is that after the 2nd step, you no longer deal with proctitis. The bad side, after the 2nd step, you have a loop ileo, and the stoma is much more difficult to deal with for many. You will get through it though. It's a lot when it's happening, but once it's done, it's all in the past.

Thank you notsosicklygirl... my surgeon said it is normal and is setting up an appointment with a new GI for me. Question you said 2nd step you have a loop ileo and its more difficult to deal with. Can you explain that part to me.

Thanks
Valli
Posted 1/9/2018 4:37 AM (GMT 0)
I wouldn't worry too much, you're very new to this all. You will get a lot better at everything, and I am sure the loop won't cause you too much trouble - some people have no trouble with it at all. It's very individual. The problem I had with my loop was that the stoma was very short. My end was short, but this one sort of pointed down and seemed to recess at times. It was fast moving, and the output was very liquid, because of those two things, I got dehydrated easily. I would get really dizzy at times... It was hard to work with. It's a short time you have it, 8 weeks, so it's just something you get through.
Posted 1/9/2018 3:18 PM (GMT 0)

notsosicklygirl said...
I wouldn't worry too much, you're very new to this all. You will get a lot better at everything, and I am sure the loop won't cause you too much trouble - some people have no trouble with it at all. It's very individual. The problem I had with my loop was that the stoma was very short. My end was short, but this one sort of pointed down and seemed to recess at times. It was fast moving, and the output was very liquid, because of those two things, I got dehydrated easily. I would get really dizzy at times... It was hard to work with. It's a short time you have it, 8 weeks, so it's just something you get through.

question again sorry..
does everyone getting a j pouch get a loop and is it two stomas stool and mucous output, I am trying to read up on it, just not understanding it all confused
Posted 1/9/2018 4:29 PM (GMT 0)
It's just one stoma but there are 2 openings. You can't notice that it's any different from the end stoma from looking - unless you really inspect it, it's more like a dome... I think the most common surgery for jpouch is two steps. if you have two steps, you have step 1 & 2 from a 3 step in step 1. Because of that, you end up with the loop right away, and you never have the end ileo. Having two steps speeds up t he process a lot, you only have an ostomy for 8 weeks. With 3 steps, you have it about 12 weeks after step 1 and 8 weeks after step 2, but some of us go into surgery very ill, and 3 steps is our best option.
Posted 1/11/2018 4:12 AM (GMT 0)
Pretty sure the surgeon told me it would be a 3 step .
Posted 1/14/2018 8:44 PM (GMT 0)
I had a permanent ileostomy in 2013. first I had the phantom butt, then the butt started producing both hard and soft mucus. Last year pinkish blood would come out progressing to dark red with clotting. One morning woke up in pool of blood. Went to ER got sulfates, while resting a week later while still bleeding I developed leg clots from my ankle to my hip. Back to hospital, got a filter put in then had to wait there a week for the GI and Hematologist to decide what to do. Went on Warfarin for several months. Now I have rectal bleeding every day, some days very heavy deep with clotting. I find out the my GI basically lied by telling me the the surgery would cure my symptoms. Heck he mislead me about a lot of things. I am just really depressed now....its hard enough to go to work everyday with the bag, pain from fibromyalgia, PTSD, and total exhaustion....I really don't think I can go back on an ammunesuppressant, last time I literally lost my mind, total hiving throughout body, couldn't form sentences, couldn't form thoughts, dizzy, lost way too much weight.
Posted 1/19/2018 4:50 AM (GMT 0)

widget said...
I had a permanent ileostomy in 2013. first I had the phantom butt, then the butt started producing both hard and soft mucus. Last year pinkish blood would come out progressing to dark red with clotting. One morning woke up in pool of blood. Went to ER got sulfates, while resting a week later while still bleeding I developed leg clots from my ankle to my hip. Back to hospital, got a filter put in then had to wait there a week for the GI and Hematologist to decide what to do. Went on Warfarin for several months. Now I have rectal bleeding every day, some days very heavy deep with clotting. I find out the my GI basically lied by telling me the the surgery would cure my symptoms. Heck he mislead me about a lot of things. I am just really depressed now....its hard enough to go to work everyday with the bag, pain from fibromyalgia, PTSD, and total exhaustion....I really don't think I can go back on an ammunesuppressant, last time I literally lost my mind, total hiving throughout body, couldn't form sentences, couldn't form thoughts, dizzy, lost way too much weight.

Isn’t a permanent ileostomy the removal of the colon , rectum and anus . If so where are you bleeding from?? I am sorry you are going through all this .👼

I am still bleeding started 2 days ago worst ... more so then the last week or so. I went through a 4 hour operation only to start up with my UC again not happy . I don’t want anymore blood transfusionssad
Appointment with the surgeon on Tuesday . I just finished my last prednisone 3 days ago I tapered down 10 mg per week from 50 to 5 last week to nothing now 3 days ago . Could the bleeding be worst because I have reached the level of not taking anymore prednisone ????
Posted 1/26/2018 2:20 AM (GMT 0)
I had my appointment with my surgeon and she said the bleeding was completely normal and she did say its proctitis you were right notsosicklygirl ( thank you ). I just don't like the urges and bleeding https://www.healingwell.com/community/emoticons/mad.gif but I do feel better knowing its ok now. Will get my hemoglobin checked to make sure I am not losing too much blood after a few blood transfusions I want to keep it inside me not lose it again to the toilet.

My step 2 ( j pouch surgery ) is scheduled for the last week of March or 1 st week of April. So scared of another operation. I just started healing up after my Dec 12 one.......
Posted 1/28/2018 9:42 PM (GMT 0)
Sounds like diversionary colitis, standard treatment is topical 5ASAs, topical steroids, topical sodium butyrate and glutamine.
Posted 2/3/2018 9:13 PM (GMT 0)
It seems a lot of perm ileos end up with the rectums still left in like mine. Surgeon said it like it was a good thing...obviously I don't think so.
Posted 2/3/2018 9:29 PM (GMT 0)

widget said...
It seems a lot of perm ileos end up with the rectums still left in like mine. Surgeon said it like it was a good thing...obviously I don't think so.

A lot of us are on a 3 step path to a jpouch, and after the first step, you usually have the rectum. After the 2nd step, it's gone and you no longer have any proctitis, so the symptoms resolve, but you're left with a loop ileo, which is much worse than the end. You're also just 8 weeks to a j-pouch, which has it's pluses and minuses.
Posted 2/4/2018 4:58 AM (GMT 0)
The bleeding is getting better I have been on cortiform for about 10 days. And now only once a day do I bleed and it’s not like before .

I am so not looking forward to the loop ileo or my second operation sad
Only looking forward to my third when they connect it .
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