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UC back in anus....ugh

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Posted 10/10/2014 10:25 PM (GMT 0)
I had a proctocolectomy with end ileostomy in 2010. My surgeon did not sew the anus closed because, in his opinion, there are more complications when this is done. Ok...I trusted the guy...he did a great job creating the stoma. My UC was in the rectum, my colon had no disease other than diverticulosis. But, you all know when the rectum goes, the colon goes along with it. The day I came home from the hospital, a bunch of foul smelling gunk came out of me. Only, it came out my vagina!!!
Long story short, I have had bleeding off and on from the vagina....not a lot, basically just some spotting and only on occasion. I saw my gyn several times and have had three transvaginal ultrasounds done...all came out clear. My thought was I had a recto-vaginal fistula....the gyn didn't agree..oook.
I started to get some discomfort inside the anus during the summer. I do have a huge skin tag and thought this the culprit. The discomfort became downright bothersome and I started to feel some pressure inside the anus. My surgeon has retired, so I saw another colorectal surgeon in his office over at Penn. I didn't care for this guy at all. He anuscoped me three times and blew air into the anus. I bled quite a bit out the vagina after this procedure. He said he couldn't see anything and wanted me to come in for biopsies. Somehow, I just wasn't comfortable with this guy. I read about him online and discovered he just passed his boards for colorectal surgery last year. I cancelled the biopsies and saw a surgeon here in Jersey on Wednesday. He took one look up there, told me I have an anal fissure, and active UC inside the anus. The reason for the bleeding from the vagina is exactly what I thought....most probably recto-vaginal fistula. He prescribed Canasa suppositories and a cream which I have to dispense into the anus. This has me a bit concerned because I have no rectum. He explained that the rectal stump is short and further up than where the suppositories reach, not to worry about breaking through the staples. He wants to bring the UC under control before doing the biopsies. So, Nov 6th I am scheduled for the biopsies.
Sorry this is so long, but what is everyone's take on this? Am I looking at more surgery to remove the anus? This surgeon said he wouldn't remove it if the biopsies are negative, but I should have yearly exams of the anus. UGH..UGH UGH. I am 68 yrs old and the last four years, since my operation has been heaven compared to the 12 yrs previous when I suffered with UP.
Posted 10/10/2014 10:37 PM (GMT 0)
Ugh...sorry you're going through all of this.

Get a second (or is it third or fourth by now) opinion. Benjamin Phillips at Jefferson. EXCELLENT! Love him.

Good luck!
Posted 10/10/2014 10:50 PM (GMT 0)
Do you see a GI anymore? If you keep going to colorectal surgeons about this, they're going to recommend surgery, and they're not experts in treating IBD medically... surgery is what they know and what they do. A GI might have a better plan for managing your symptoms without more procedures.
Posted 10/11/2014 12:26 AM (GMT 0)
You're in south Jersey right? Jefferson university hospital in Philly has an excellent GI dept. Maybe get a second opinion from a new GI doctor. If they recommend a surgeon, they have an excellent colorectal staff there as well. I had my surgeries there and I was really impressed with them.
Posted 10/11/2014 1:52 AM (GMT 0)
I'm sorry, Christine- I know this is a major blow to you. While I do have the infamous Barbie butt, & I had some trouble with it healing (took forever..), I do know that UC is forever a thing of the past for me.  I guess at this point, it's your call- are you willlng & able to have surgery to get the anus renoved? Or, if not, are you willing & able to do the suppositories, meds, etc? What do you hope to be the end result? good luck- I don't think I'm mentally strong enough to ever deal with it, UC, again. Does your husband have any opinion, just out of curiosity?
Posted 10/11/2014 3:36 AM (GMT 0)
I don't have a GI doctor. My GI doctor, that treated me for 12 yrs, and I parted on not such good terms. I would like to see one of the doctor's in the same practice, but my former GI won't permit that. Yep, that's right, won't PERMIT it!!! I don't know what kind of power that guy has in that office but his own associates act like they are scared of him! To be honest, I never thought of seeing a GI doctor after my surgery unless I had upper GI problems.
I am hoping the rectal meds (should say anus meds) do the trick. I am willing to have the biopsies. This guy doesn't strike me as being overly zealous to operate. He did say, "the worse scenario" would be to take out the anus. He is hoping the rectal meds get things under control. The biopsies are to make sure there is no malignancy. I don't know what, if anything, they do for fissures or recto-vaginal fistulas. Would they repair it when they do the biopsies? I am having the biopsies done as an out patient procedure at a surgical center.
Bye Bye UC....I would prefer to stay in Jersey, mainly because it's a pain in the rear driving over to Philly...parking is a horror. We have a big SUV that doesn't fit into most parking facilities. However, having the major surgery, I didn't want done here in Jersey.
Posted 10/11/2014 11:40 AM (GMT 0)
I hear you about the city and parking. I just cannot go anywhere local to me because the gi docs around where I live here in NJ have no clue. Good luck with everything.
Posted 10/11/2014 3:45 PM (GMT 0)
i've never understood why some surgeons leave the anus and others don't. Seems to me if you are a UC patient that the risk would be high for continuing problems, as you have learned. So sorry your nightmare continues.

Sue
Posted 10/11/2014 5:20 PM (GMT 0)
Forgot to add that I have been taking Ibuprofen for my back pain (three fractures due to osteoporosis). The surgeon I saw the other day came running out of his office, into the parking lot, to tell me...get off the Ibuprofen because it may be contributing to my problem. Well, duh...I knew Ibuprofen was a no no for UC, but since my operation ,thought it would be ok to take. He gave me a script for Tramadol for pain. Anyone ever use this? Right now, every joint in my body aches. I don't know whether I have a bug, or it's from the rectal meds, UC or RA.....just getting old I suppose.
Posted 10/11/2014 6:50 PM (GMT 0)
I'm sorry to hear this. :( It's my fear about the subtotal colectomy, getting UC in the remaining areas. I hope you can find a solution that will work for you.
Posted 10/11/2014 9:34 PM (GMT 0)
They put me on 25mg of tramodol after my surgery for pain every 6 hours.....I really can't tell if it helps or not. I think I read somewhere on here that it wakes up your brain so it maybe what's interferring with my sleep. Not sure.

Good luck. Pain sucks.
Posted 10/12/2014 1:49 AM (GMT 0)
I think Tramadol is one of the better painkillers, but not convinced it's strong enough to be effective straight after surgery. However, for mild to moderate pain it's good. And hopefully it will help you.

Ibuprofen is bad news for the GI tract. Occasional doses are okay, but I wouldn't want to be taking that stuff every day for very long. It can cause ulcers and, more rarely, GI bleeds. That said, I wouldn't have thought it would affect your anal stump - doubt it does, tbh.

Sorry about the return of the UC and your fistula. It absolutely sucks when problems aren't fixed and come back to haunt you :/ I recommend googling recto-vaginal fistulas and reading up on the different treatments for them. It's also a question for your colorectal surgeon; does he intend on doing anything about it and, if so, what?

Gotta go to bed now. Literal zombie... >_>
Posted 10/12/2014 2:00 AM (GMT 0)
Never have heard of UC in the anus and I would question the diagnosis. It may be that you have Crohns and were mis-diagnosed which is pretty common. Crohns can involve the anus. The treatment would be the same.
Posted 10/12/2014 2:18 PM (GMT 0)
     rdm...well, if I was misdiagnosed then I had a pretty DUMB GI doctor for twelve looooong years.  I can't count how many colonoscopies he did on me during those years...twice a year at least.  Sigmoidoscopes in between the colonoscopies.  It's a miracle my butt just didn't leave my body and say...."The hell with you woman, I've had more visitors than the White House." rolleyes    Ironically, like I mentioned before, all my colon had was minor diverticulosis!  My rectum, according to the surgeon who operated on me, was BADLY diseased.  This new surgeon said the inflammation looks as though it is trickling out from the rectal stump.  Like it's waving Hi, I'm baaaaack!"

     I hate to google anything, because it gives you some super scary stuff to ponder over.

     Yesterday was a bad day...so sore all over, entire body ached like I had the flu.  Maybe because it was a rainy, damp day...just yukky.  Today, still achey, not as bad, but it is a beautiful day and I am getting myself together and getting the hell out of the house.

     I am too chicken to insert that nozzle into my anus with the medication, so I am only inserting it part way up.  The doctor said my rectal stump is up higher, so it wouldn't be a problem...but...I just don't feel comfortable doing that.

Posted 10/12/2014 6:44 PM (GMT 0)
Sorry your having so many problems. There are quite a number of people who believe they have UC get J pouches and end up with a Crohns diagnosis after things go wrong Crohns can be had to differentiate from UC if it only involves the colon. Just an example of misdiagnosis.

Without going into too many details I have an end ileo with my anus intact. I had UC, failed J pouch, removed J and as said I have an end ileo. I have had no problems with the anus ( we are all different of course) but I really have no rectal stump (a tiny amount of stripped rectal cuff) and I find it difficult to understand why your surgeon left any rectum in you given your history of UC and proctitis and that you have an end ileo (unless you were considering going to a J pouch) this seems almost like malpractice.
Posted 10/12/2014 10:22 PM (GMT 0)
     rdm..it is my understanding that I have NO rectum...rectum is OUT,stapled shut.  I also have no colon.  My surgeon said right from the get go that I wasn't a candidate for J-pouch, so no loop ileo either.  Giving my surgeon the benefit of the doubt.  I was sick as a dog when I first went to him,  BP of 216/110, prednisone induced diabetes, down to 113 lbs, full blown osteoporosis, 8 - 10 bloody bowel movements every morning.  I was 2 months shy of my 64th birthday at the time of my operation.   What do you mean by malpractice?  If anyone could be accused of malpractice it would be the moron GI who treated me for 12 yrs and NEVER suggested surgery, just wanted to try more and more drugs even thought they were slowly, but surely, killing me.

    

Posted 10/13/2014 7:06 AM (GMT 0)

Christine1946 said...
Ironically, like I mentioned before, all my colon had was minor diverticulosis! My rectum, according to the surgeon who operated on me, was BADLY diseased. This new surgeon said the inflammation looks as though it is trickling out from the rectal stump. Like it's waving Hi, I'm baaaaack!"
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The reason I say malpractice is that as you say above you have a "rectal stump" that typically means you still have some rectum left, which if you have UC and go to a permanent end ileo with no J pouch in the future it should all be removed, no stump. There is no reason to leave any of it (and a big reason to remove it) except maybe a tiny amount to staple shut. And that which is left should be stripped of the mucus membrane. My first question to your new surgeon would be how big/long is the rectal stump.

It seems that you are being treated with enemas as you mention nozzles. If you had all your rectum removed this would not be a way to treat anything in your anus as you would only be able to go up maybe 2 inches, there would be no way to hold anything and you could injure yourself with by pushing the tip into the closed off area at the end of the anus which as your Doc said is not an issue. So it sounds to me like you may have a substantial rectal stump which should have been removed in the original surgery even if they left the anus and didnt sew you up.
Posted 10/13/2014 4:59 PM (GMT 0)
Christine~I'm so sorry to hear you're at this point...It sounds like there are many causes of all your discomfort. The biggest issue being the 'stump', how far it goes up should be answered by the doctor treating you now (or, do you have your surgical notes?) as well as where the fistula goes.

I am a fan of teaching hospitals (or at least a CR Surgeon/GI who has done a fellowship at one), do you have one near you? From what you have said, quality of life is what your looking for, and that's why you had surgery in the first place. It's going to be your decision, as to what direction you want to go and what you are willing to live with, but you should have answers to many questions to do that.

Please think about traveling if it gets you better medical care. You really need a CR Surgeon/GI who has experience in IBD/surgery and has done many surgeries of this kind as well as pro/cons for you individually. If you decide not to go the surgical route, you'll at least have peace of mind.

(((HUGS)))
Posted 10/13/2014 5:07 PM (GMT 0)

rdm said...

Christine1946 said...
Ironically, like I mentioned before, all my colon had was minor diverticulosis! My rectum, according to the surgeon who operated on me, was BADLY diseased. This new surgeon said the inflammation looks as though it is trickling out from the rectal stump. Like it's waving Hi, I'm baaaaack!"
[color=#800080> ]
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The reason I say malpractice is that as you say above you have a "rectal stump" that typically means you still have some rectum left, which if you have UC and go to a permanent end ileo with no J pouch in the future it should all be removed, no stump. There is no reason to leave any of it (and a big reason to remove it) except maybe a tiny amount to staple shut. And that which is left should be stripped of the mucus membrane. My first question to your new surgeon would be how big/long is the rectal stump.

None of us can tell over the Internet what Christine's original surgeon did or did not do, but you are incorrect in your conclusion. "Rectal stump" refers to any closure at the proximal anus. It does not mean that there is rectum left behind. It *can* mean that -- but the term is also used when the entire rectum is removed and the "stump" is closed.

With regard to malpractice, medicine is a cost-benefit analysis. I would personally not be surprised to hear that some rectum had been left behind, because Christine was a high risk surgical case at the time and removal of the entire rectum is a much riskier procedure than removing most of it, as a complete proctectomy requires work around delicate structures in the pelvis. It's possible that her surgeon felt she was much more likely to have surgical complications due to removing the entire rectum than she was to ever have problems with a small amount of rectum left behind. Again, none of us really know.
Posted 10/13/2014 6:20 PM (GMT 0)
     Pluot, you nailed it.  I had great confidence in my surgeon.  I researched his credentials on the net.  He was head of colorectal surgery for several years at the Univ. of Pa.  He trained at the Cleveland Clinic.  I met many people from miles away in the waiting room who told me their GI doctors highly recommended Dr. Fry.

     I KNOW I have NO rectum left because back in 2010, when I started with the bleeding from the vagina, Dr. Fry sent me for an MRI of the pelvic area with and without contrast.  I should have gone to another facility than the one I went to because the woman kept me under that dome for an hour and a half, then, when it came time to administer the dye, she couldn't find a vein and stuck me four times.  At that time, I said, "I'm done here, you people need to go back to school."  When Dr. Fry received the report from them, it stated the test was "inconclusive" and suggested Dr. Fry send me for a CT scan of the rectum.  When Fry read the report, he said to me, "What the heck is this?  How can they do a CT scan of the rectum when you have no rectum?"  Hindsight is 20/20, but, I never did go for another MRI anywhere else.  Instead, I went to the gyn doctor and had the transvaginal ultrasounds done, one each year...all negative.  The bleeding only happened once every few months, and I couldn't really call it "bleeding".  Minimal pinkish spotting describes it best.  My gyn said this was because of my age and the thinning of the cervix.   The discomfort just started over the summer.  The skin tags have been there since my UP days and Dr. Fry said they were not pre-cancerous.

      So, long story short....I have NO rectum and this new surgeon said I had a short stump.  I do NOT place that nozzle or the entire suppository far into the anus.  The doctor showed me on the chart just how high up the stump actually is.  I figured only a few inches.  If you ask me, I think the young doctor over at Pennsylvania Hospital caused more harm than good by blowing air into the anus.  I have had much more discomfort ever since that exam.

     Pluot, you are correct.  I was considered "high risk".  I heard the nurse making sure they had a room in ICU for me following my operation.  She was horrified that I overheard her, but downplayed it by saying..."Oh well, it is only as a precautionary because of your age."  I found out they actually DID place me in ICU for a few hours following my operation.

Posted 10/14/2014 1:30 PM (GMT 0)
Christine so sorry that you're having this complication. I agree with some of the others, though, that you have to get a GI in the mix -- they are the primary person for treating UC's, surgery is one choice among many. Hope you can get off to a better start w/one.
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