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Rectal Bleeding post proctocolectomy

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Posted 3/3/2016 7:08 PM (GMT 0)
Hi Everyone,
I am new here. My father( 63 ) suffered from UC and underwent proctocolectomy (with permanent ileostomy) on the 4th of January 2016. The surgeon informed us that he has left a small portion of the rectum intact so that the ooze and discharge from the internal wounds would find a way out. This was in addition to an opening in the abdomen for the same purpose. This was required, he told us, because my father's rectum and sigmoid colon were severely inflamed and swollen; and hence the void inside would take some time to fill up.
A week after the surgery, my father started getting discharge from the rectum, in large amounts at first and then gradually reduced. It looked like blood but the surgeon insisted it was the ooze from the wound inside. Its almost 2 months since the surgery now but he still has bleeding/discharge from the anal passage. There was pain in the anal passage but it has now reduced. He has to use diapers so he doesnt soil his clothes.
The surgeon has advised us to apply castor oil in the anal passage and my father has been doing so for some time. On the last visit to the surgeon, he said that the wound has closed now and the discharge is from the disease in the remaining rectum. He asked us to mix powdered omnacortil (prednisone) tablets in the castor oil and apply in the anal passage once or twice a week. We followed the advice the day before yesterday and the bleeding increased yesterday with large clots of blood also in the discharge. I called up the surgeon and told him about it. He said that the prednisone might have opened up the wound inside and the discharge/clots/blood are nothing but the ooze built up inside over time. And its good if all of it comes out, so we should repeat the application for 3 or 4 more consecutive days and then apply once in 5 days later.
We were very scared to see the increased bleeding and large clots and are really skeptical about using prednisone application again. I would be grateful if you guys could share similar experiences, if any or help with any advice.
Primarily, I have the following questions:
1. Is prednisone safe for such use (application on wounds)?
2. How bad is it if the discharge from the internal wound doesn't come out of the body?


Apart from this, my father doesn't have any other major problem right now. He is pretty weak, yes, but is improving gradually. He has started consuming a normal diet and is dealing with the ostomy well.

Any inputs/advice would be welcome.
Thanks.
Posted 3/4/2016 12:02 AM (GMT 0)
I seem to have a very similar problem...similar, but different. I had a total proctocolectomy with end ileostomy on June 28, 2010. My problem was ulcerative proctitis, with which I suffered for twelve years. I was also 63 at the time of my operation. My surgeon left the anus intact, but I was informed that the rectum and colon were gone. I had my surgery at Pennsylvania Hospital in Philadelphia by the head of colorectal surgery. I had no idea he was going to leave the anus. Two weeks post op, I developed a hematoma inside the anus. The surgeon was able to drain it during an office visit shocked He explained that there are more complications when the anus is removed (his opinion) and, like in your father's case, if there is mucus, it is able to drain out instead of settling inside.
My problem is that I believe I have a rectovaginal fistula which NO ONE can find!!! From time to time, I have some bleeding from my vagina (I am more than 20 yrs post menopausal) and for the last year or so, I have quite a bit of mucus which drains out of the vagina, not the anus. My surgeon retired in 2013 and I am seeing another colorectal surgeon here in south Jersey. The disease is inside my anus and the rectal cuff. He did extensive biopsies which showed NO dysplasia, no cancer. I was told to use Anucort suppositories, which is a steroid. Well, I have such little room in there that I cannot insert an entire suppository and it caused a lot of discomfort. He then told me to use Proctofoam, which when inserted causes burning inside my vagina!!! They cannot find a fistula, but because of my symptoms, they agree there must be one. Since there is no feces passing through, they are not concerned. For the past month or so, I have seen quite a bit of mucus and must wear a panty liner. I also have been to my gyn doctor since my operation and had three transvaginal ultrasounds, PAP tests, MRI's and all negative. So, for the moment, I just have to live with this because they said to undergo an operation for removal of the anus would be too much of an operation for me and the outcome may be worse than what I have now!
It's early on since your dad's operation and I think he is just going through the healing process. However, ask his surgeon if he should undergo yearly biopsies of the anus. My surgeon didn't tell me that, but the doctors I see now instructed me to do so.
Posted 3/7/2016 6:00 PM (GMT 0)
Hi Christine.
If you suffered from ulcerative proctitis, why was your entire colon removed? Is that the standard procedure for all forms of UC? And was your anus stitched from inside?
In my father's case, there is no stitch in the rectal stump. The surgeon said that if the disease persists in the long term, the inner wall of the remaining rectum and anus can be burnt(I believe "cauterization" is the technical term). Can't that be an option for you?

I do hope my father's wounds are healing. But the bleeding and the clots scare me. Sometimes the clots are big and I touched one and it felt like flesh and not a clot. I am going to talk to the surgeon about this. Meanwhile, we have not used the "prednisone+castor oil" again. Also his haemoglobin level has fallen from 11.2 gm%(24th Feb) to 10.2 gm%(4th Mar). I hope this is temporary.

Christine, how is your overall health otherwise? And your stoma?
Thanks for the reply.
Posted 3/9/2016 11:35 PM (GMT 0)
Hi! My overall health is very good. I saw the colorectal surgeon today. I still have the disease, no surprise. I told him the Proctofoam burns my vagina. He told me to discontinue all rectal meds. Oral meds would be of no use because the disease is too far down. With UC, even when only the rectum is the diseased part, if they remove only the rectum, the disease will eventually travel into the large intestine. The surgeon told me today that I have anal stenosis, the anus is extremely narrow. Maybe this is because nothing is passing through it? He stretched it some today and also looked into the vagina, still searching for that ever elusive fistula. I think it is under that rectal cuff. I can't remember whether they said it was stapled or sutured from inside.

Next step is I have to have a (limited) barium enema with contrast and be xrayed. This scares me to death because when I made the appointment, the girl sounded like she didn't know what I was talking about. She mentioned something about going into the stoma and I told her NO WAY. They don't have to go into the stoma for the test, they are looking for a rectovaginal fistula. UGH. My stoma works like a dream, always has. That is why I went over to Philly and had the head of colorectal surgery at Pennsylvania Hospital do the operation in the first place! For this disease to come back is blowing me away! I also have to see my GYN doctor AGAIN!! Wish I could get some answers. My colorectal surgeon said surgery is a last resort. It would be a big surgery and he isn't sure he could get it done by just going into the anus. He doesn't know what problems may be lurking under that cuff. Having cauterization was never even brought up! I think I will run it past him though. Thanks for mentioning it. Your father's hemoglobin is low. Is he bleeding a lot out the anus? Plus, the treatment you mentioned about the castor oil...never heard of that either. Do you live in the states?
Posted 3/12/2016 6:38 PM (GMT 0)
Great to hear that your overall health and stoma are going good. I am just curious whether the output charged consistency over time?
I hope they find and treat the problem that is troubling you. Going into the stoma. Ha. I think she must be the receptionist and only deals with the appointment. The actual lab technician should be aware of what should be done.
If not going into the anus, how will he go about it? Yeah do discuss cauterization with him. And let me know what he thinks about it.
Yes, he is bleeding on a constant basis. His Hb levels went down to 7.8 and he had to undergo transfusion before the surgery. So, we were very happy with the rise to 11.2 but now the fall has been worrying us. He has been feeling weaker lately. I hope they find a way to stop the bleeding soon.
Posted 3/20/2016 2:24 AM (GMT 0)
I know the hemoglobin dropping might seem scary but it is perfectly normal when you are having chronic bleeding, and is not really that bad as long as it doesn't keep dropping at that rate. When you get to an 8.0 that is when to worry and when you need a blood transfusion. Hope this helps. I know the blood work report says it is low at a 10.2 but from years of anemia experience from my Crohn's disease I have come to believe otherwise. I hope the bleeding gets much better. I had bleeding from my proctocolectomy but nothing near this bad. I just had problems with the incision staying sewn together. Had to have a wound debridement and antibiotics because of strep infection.
Posted 3/20/2016 2:58 PM (GMT 0)
Hi! How is your dad doing? Still bleeding? I went to the radiology place on Wednesday. They inserted a catheter into my vagina, inflated it and inserted a dye. Still cannot find that fistula! Going to the gyn this Wednesday. I am on Cipro because last Monday I awoke with pain which radiated from the anus, up into my back and around to my groin. Since I started the Cipro, the pain has ceased, but still have pressure.
Does your dad still have drainage? How is his hemoglobin?
Posted 3/28/2016 6:08 PM (GMT 0)
Yeah, he is still bleeding. Now the surgeon is sure it is from the active colitis in the residual rectum. In fact, we met another GI surgeon and he did a proctoscopy and said the walls of the rectum are inflamed and bleeding.
We are getting the bloodwork done every 10 days and the hemoglobin is now down to 9.4 (from 9.8 and 10.2 before that). He has been prescribed Mesacol suppositories but they don't seem to have helped till now. Once a day, he bleeds more, along with a clot or two, sometimes as thick as a finger. I guess the clot formed keeps the blood inside and all comes out when it cant hold any longer.

The surgeon had told us initially that he had left a small portion of the rectum so that the ooze inside could drain out. And now he is saying that he did it so that there might be a chance of reversing the ileostomy. This really pissed me off because we were clearly told by the doctors that he will be undergoing a permanent ileostomy because UC was most active in his rectum. Now my father is left with this problem and I don't know how long will it take for it to subside.

Thank you SEHart717. It is very scary. I hope it doesn't come to a point when he would need a transfusion. When did you undergo proctocolectomy and how are you doing now?

Christine, how did it go with your gyn? And how is the pain now?
And I live in India. Sorry, I forgot to answer that the last time.
Posted 3/29/2016 3:09 PM (GMT 0)
Wow...If I didn't know better, I would have sworn your dad and I had the same surgeon! That is the exact same explanation my surgeon gave to me as to why he left the anus open! It was my rectum which was badly diseased too! He left it open for "drainage". I knew I was NOT a candidate for j pouch because he told me that right from the get go.

Since I last spoke with you, I have gone to the gyn, had blood work drawn, and yesterday had a CT scan of the pelvis and stomach. I know everything is going to come out normal because they are barking up the wrong tree! The disease is still inside the anus, around that rectal cuff. I would bet my life the reason they cannot find the fistula is that it is located behind the rectal cuff and somehow it adhered to my vaginal wall. The Cipro brought the worse symptoms under control, but I still have the pressure inside the anus. My new surgeon doesn't want to remove the anus because he said it would be too much of an operation for me and to just have biopsies every two years or so. What the heck??? Is he just waiting for me to get cancer and THEN operate? I did get a second opinion and he agrees with this surgeon.

As for your dad, they ought to find out exactly where the bleeding is coming from. I didn't have that problem, although I must have hemorrhaged on the operating table because my husband and daughter were notified that they were taking me to ICU for awhile. From time to time, I do have a little blood which comes out my vagina. Nothing from the anus. Gyn tests all came out ok.
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