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UC outside the colon - women specific

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Posted 5/9/2015 12:52 PM (GMT 0)
Hi there!

It's been a while since I have posted. I had my colon removed in 2012 and thought that would be the end of it but still having some issues.

When I had UC I also had canker soars in my mouth. Now I'm reading that UC can also go into your Vaginia as there is just a thin layer of tissue separating the anus and vaginia.

When my colon was removed I still had my anal stump but after a year that had to go too as it was active with UC. I heard when the anus is removed the uterus falls back as there's nothing there to support it so I do get a pooling of blood during my period. Well I'm not having my period and I occasional see brown on my toilet tissue after wiping that area. I also heard a plop in the toilet and saw the pinkish cloudy liquid like I used to before my operations.

Another lady I know had UC and had the same surgery. She still has her annual stump with active UC. She recently told me that she now has the UC in her vaginia? I alway felt there was a connection between those areas.

So my question is. Has anyone else have this issue? How do they treat UC in the vaginia? I saw there's a new foam budesonide steroid med...maybe I can use that?

I had the operation because the drugs were not effective and I could not tolerate the low end meds. Doctors were afraid to put me on immuran or Humera because this.

Otherwise I seem to be fine. Doing a lot better without the colon and ok with the bag. It take some time getting in the routine but pooping was soooo painful I didn't want to use that end anymore! Now I just poop on the go!
Posted 5/9/2015 5:12 PM (GMT 0)
Ulcerative doesn't happen in other areas other than the rectum, colon, cecum and sometimes backwash into the terminal ileum with U.pancolitis.
I've not seen the term anal stump before...more the rectal stump (at the rectal/anal junction), or are the terms interchangeable? Did you have your entire anus removed?

Is it possible your friend has an anovaginal fistula?

q
Posted 5/9/2015 10:19 PM (GMT 0)
She was diagnosed by a colon rectal surgeon. They couldn't find any fistula. Other than that when my colon was removed they first left the anus in, hence the term anal stump. The anus was stapled shut at the top where it attached to the colon but later I had it removed as it had active UC.

When I was first diagnosed I was told UC can only be in the colon and once you get your colon removed no more UC. Now I'm hearing different through CCFA support meeting and other forums. There was a post on HW about this in 2013. I just wanted to get some updated views.

Apparently they don't know everything about UC yet.
Posted 5/10/2015 1:23 AM (GMT 0)
Look up the archived thread started by Bess on "vaginal problems with UC". One forum member discussed another auto-immune disorder there called Lichen Sclerosus that UCers can also get, though it is more rare. From what she described, it can affect the vagina & labia. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/10/2015 1:29 AM (GMT 0)
Wow Peace&Harmony, who told you that UC only affects the colon? I hope whomever it was you're no longer wasting your time with them because that's ridiculous that any specialist (I'm assuming) would tell you that. UC most commonly starts in the rectum and moves up into the colon...but I'm guessing you know that now lol.

Have you visited the ostomy board here at HW yet? I bet they would have a ton of advice for you as well.

Wishing you the best with your current issues, I hope you find relief and have a great GI now to aid you with that issue (and Gyno too).
Posted 5/10/2015 2:51 AM (GMT 0)

pb4 said...
Wow Peace&Harmony, who told you that UC only affects the colon? I hope whomever it was you're no longer wasting your time with them because that's ridiculous that any specialist (I'm assuming) would tell you that. UC most commonly starts in the rectum and moves up into the colon...but I'm guessing you know that now lol. quote]
---------------------------------------------
Of course, I missed putting rectum in my post..thanks pb for the heads-up to reread my post..

UC doesn't affect the anus (from what I've ever read), but my anus certainly gets owie when flaring) or the vagina, but complications/other autoimmune in conjunction with aren't uncommon.
q

Posted 5/10/2015 5:04 PM (GMT 0)
I've posted to the ostomy board as well but they aren't as active as this board. It's also a mixed crowd over there as there are many reason for having an ostomy. Always like this board better as you gals are very responsive and helpful!

When they removed the colon there is connective tissue to the anus left that will still have the disease so I guess it's more like a rectal/anus stump. That why I didn't choose to go with the j-pouch. I didn't want to go through 3 operations and then find out it's just like UC all over and have to get it reversed. Plus the drugs weren't helpful for me anyway and I experienced too many side effects from the low end stuff that the docs didn't feel comfortable giving me any of the immune suppressors as they tend to be worst with side effects!

Just think it's weird to have some pink cloudy stuff slip out of my vagina while on the toilet. All that time I though tit was from my anus! It's hard to tell when you have more than one hole down there. When one get taking away and things keep happening it makes you wonder!
Posted 5/10/2015 11:16 PM (GMT 0)
Peace & Harmony, it is indeed weird to have "pink cloudy stuff" slip out of the vagina-- between periods or if one is post-menopausal. In those cases, it seems to me that the gynecologist should take a vaginal culture-- to be sure nothing bacterial or otherwise infectious is happening. I had an experience where the (female) gyn did not take any culture, but told me what you just added to Bess's thread RE wearing cotton panties. I told the gyn that I had been wearing cotton for many yrs-- so gyn then asked if I washed the underwear in hot water! (I couldn't believe that stupid Q!) So I replied that hot water ruins underwear, and I felt like adding: "You probably never do laundry yourself-- so how would you know?" It's important for the gyn to rule out infections by testing for bacteria, fungus, etc. when women repeatedly have unusual vaginal discharge, and not just blame it on nylon underwear or strong detergent. You mentioned that CCFA gave info lately on women's problems; can you tell us what they focused on? Please keep us updated on your situation. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/11/2015 1:44 AM (GMT 0)
Old Hat. You must have confused my post with your situation. This was to help heal the physical impact from my surgery...nothing to do with an illness.

When the anus is removed the uterus slips back as there's nothing to support it. Due to this I get a pooling of blood and discharge that gets released when I sit on the toilet. I feel fine otherwise. I have spoken to my GYN about the pooling and they said its nothing to be concerned about. I was concern of getting an infection from it but was told no.

I have my GI appt tomorrow and ask him about getting a work up at John Hopkins Hospital in Baltimore MD. I'm sure they can look at both parts.
Thanks for the posts and I'll let you know what happens so others can hopefully get something out of it too.
All that was mentioned at the CCFA meets was how UC can show up in other part of the body. I know I had lots of cankers sores in my mouth and read online through another forum of UC in the vaginia included my friend. She had a color rectal surgeon look with a scope and found it.cshes been to GYNs and they couldn't find anything. GYN may not be the way to go for this as UC is more a GI thing.
Posted 5/11/2015 6:01 AM (GMT 0)
Thanks for the additional explanations, Peace & Harmony. I'm concerned about gynecologists not recognizing that women with UC can have special needs for attention. Judy2 just posted last week that her gyn kept treating her for vaginitis, but she actually had developed a recto-vaginal fistula, and prepping for a c-scope recently clued her in to it because the prep fluid came out of her vagina besides anal expulsion! (Scary!) Good luck with your consult; Johns Hopkins has a very good reputation for ob/gyn treatment. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/11/2015 12:05 PM (GMT 0)
Yes it is scary when diseases cross over to another area that's covered by another discipline.

I'm glad they found the fistula. They are hard to fine. I had three forming after my 1st operation. It was the operating fluid trying to find its way out so it dug a tunnel from my rectal/anal stump to my butt check. It felt like a needle coming from the inside out! At the same time I had a sinus infection and was on Augmentin...interesting how an anti-bacterial med can make fistula pain go away. They kept me on the Augmentin for 2.5 months as I was waiting for my surgery. My GI said they normally use Cipro for this but since I count tolerate Levequin due to tendinitis in my wrist I could take Cipro either.
IBD is definitely not the disease for me! Sucks when the disease doesn't respond to meds and you can't tolerate the med either.
Posted 5/11/2015 6:26 PM (GMT 0)
UC doesn't happen in the uterus or vagina...it just doesn't.
There are extraintestinal issues that come with UC...inflammation elsewhere....but it's not UC crossing over to another part of the body.

q
Posted 5/12/2015 1:16 AM (GMT 0)
quincy,

what is your assumption based on?

Hopefully I'll have additional information for everyone as I'm contacting my surgeon at John Hopkins to get a combo GI/GYN work up.
Posted 5/12/2015 2:52 PM (GMT 0)
Hey everybody!!! So your post is over here in the UC section Peace...no wonder I couldn't find it...I was looking in the ostomy section...duh.

OK...let me jump in here. Quincy...yes....I have UC in my vagina...signed, sealed and delivered quote from my colorectal surgeon, who BTW performed anal biopsies on me back in November. Let me tell ya, not a pretty sight, those biopsies.

The same surgeon who did the initial operation on Peace and Harmony was my original colorectal surgeon. He left the anus intact. I was not aware of this fact until about a month post op when I developed a hematoma inside the anus. I thought it was a given that they automatically took the anus when they took out the rectum and colon...what did I know? rolleyes At the time of my operation, I was REALLY sick....BP of 216/110, prednisone induced diabetes, plus I was prednisone dependent for two years straight...could not get off the stuff without flaring. I suffered with UC for twelve years..tried all the meds, etc. Good thing my anus wasn't sewn closed though because he was able to get inside the anus, suction that hematoma out and place me on antibiotics. Two weeks later, all was healed. In his opinion, there are more complications when the anus is sewn shut. However, I started bleeding from my vagina about a month or so post op. I was seen by many doctors in my gyn office, had a multitude of tests...over the past five years (since my operation) I have had three transvaginal ultrasounds, MRI's, CTscans, PAP tests...all negative. Last summer, I started having issues inside the anus..pressure like I had prior to my operation. My original colorectal surgeon retired in 2013, so I am seeing a new colorectal surgeon here in Jersey. He noticed the UC inside the anus...I told him about the bleeding from the vagina...not bad, so I should say spotting. He did the biopsies and took pics inside the anus and vagina....YUK! I DO have the UC in both places. He prescribed Canasa and Cort suppositories. Well, the Canasa irritates more than soothes. I can tolerated the Cort, but as soon as I slip one in (should say half because a whole suppository is too big), I can feel it slipping right into my vagina. He did extensive exam while I was under anesthesia and cannot find a fistula!

My next appointment with him is tomorrow morning. Just hope he doesn't find it necessary to dig around in there because in January it hurt like the dickens for six weeks following that exam. I still have "issues" spotting from my vagina...but no pressure...no discomfort. I am not alarmed in the least. Should I be? I am almost 69 yrs old. The operation gave me a new lease on life. Off all those drugs that were slowly, but surely killing me and feel terrific! I haven't been to the gyn for about a year now. I'll check with the surgeon to see if I should get checked out AGAIN..ugh. In my new surgeon's opinion, Dr. Fry did the right thing by leaving the anus. But, he said I should get biopsies every two years or so to be on the safe side.

Hey, at my age, I am not looking for more surgeries.
Posted 5/12/2015 2:52 PM (GMT 0)
If it spread to other parts of the body AS ulcerative colitis, it would be available information. There is none.

Is it possible you misunderstood your doctor by him saying "it's the Ulcerative colitis" (or something like that)...but not clarifying?

There are many things that spread throughout the body, there are many things that are associated to/with....it may be wording and understanding.

q
Posted 5/12/2015 11:48 PM (GMT 0)
no, no misunderstanding. He pointed it out...it looked disgusting...and said..."Yep, the UC spread into the vagina." But...I see where you are coming from. If it is UC (ulcerative colitis)....colitis means colon..doesn't it? If I have no colon...how could it be colitis? My thoughts exactly quincy. OH..BTW...guess what brought on the flare? In the doctor's opinion....my overuse of Ibuprofen for my back pain. I knew Ibuprofen was a no no when I had my colon...but I thought I was done with the disease...so...now I take Tramadol for the back pain. I have three back fractures and osteoporosis thanks to prednisone.
Posted 5/13/2015 2:40 AM (GMT 0)
So sorry to hear that you also have vaginal complications, Christine. RE Quincy's statement: it seems that doctors need to revise the list of so-called "extra-systemic manifestations" of UC. Because, in addition to the non-gender-specific ones like joint pain, iritis, canker sores, & pyoderma there MUST BE female-specific ones. I recall that a while back someone posted here about polycystic ovarian syndrome being more common among women with UC than in the general female population. So it would seem to follow that some vaginal conditions could be related to UC, too. To my thinking, this means that gastroenterologists + gynecologists need more continuing education & collaboration so that they can help us more quickly & consistently to treat these inter-related conditions. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/13/2015 11:17 AM (GMT 0)
I agree Old Hat! There's too many system boundaries the way this disciple is set up. If something flows into another area it normally get called something else. AndGYN wouldn't know the first thing about IBD!

Right now I'm looking to coordinate with a GI and GYN up at Hopkins. Sometimes two heads are better than one! It's alway good to get a GI perspective on a GYN test..especially where there's pictures and biopsies involved.
Posted 5/23/2015 8:28 AM (GMT 0)
Well, I'm so annoyed after a follow-up trans-abdominal pelvic u/s test. The only issue it seemed to clarify is endometrial thickness, which was 3.4 in 2012 & now is 7.3-- not good. The gyn said that an intramural fibroid on right side, which had partly calcified according to 2012 test, now blocks delineation of ovary on that side-- so recommends that I next consult a gynecologic oncologist. Ugh! The one positive that came out of this latest retest: I felt nicely rehydrated after drinking a qt. of Evian water between breakfast & the exam. Vive la France! Gastro had told me to report back if gyn suggested a follow-up with another specialist-- so I'll definitely do that. This gyn stuff is so annoying!!!!! I get the impression that the quality of these u/s tests varies not necessarily just because of our pelvic changes, but also depending on WHO is administering the test & maybe even on the equipment in use as well-- at a particular location. I'm losing trust in the gyn field, which seems so inconsistent. (Rant!) / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/23/2015 1:03 PM (GMT 0)
Never in all my years have I heard of UC in the vagina. It must be for ostomates only, I know no women jpouchers with this experience.

Sue
Posted 5/23/2015 1:45 PM (GMT 0)
I wouldn't put labels on it, Suebear. nono

It just depends on how thick the lining is that separate the two areas. They are very close together and I wouldn't think diseases would know or understand system boundaries.

Here's an interesting post regarding some with a J-pouch AND UC in the vagina: http://www.medhelp.org/posts/Crohns-Disease---Ulcerative-Colitis/Can-Crohns-or-colitis-cause-vaginal-problems/show/1096182

It's just something to watch out for when you have your GYN exam. It just came more apparent as I had my anus removed and sewn shut so the only thing goo can come out of is the vagina. When you have both you can tell what come from where when you're over a toilet.

During my UC days I thought the goo was from my anus fro the UC but now that I don't have the anus I know where's it's coming from. It could be other reason too. That will have to be determine by the GYN. Right now I'm feeling GREAT and my blood test came back normal from my GI visit...so no worries for me.
Posted 5/23/2015 2:12 PM (GMT 0)
The things we all have to deal with....my goodness!! I always explain to anyone who asks that having the colon removed does NOT mean that you no longer have Ulcerative Colitis. There are plenty of extra intestinal manifestations that can persist with or without the colon. The disease does not come from the colon, that is just where it is most active. Just because we all haven't heard of every UC related issue that is possible doesn't meant that these manifestations don't exist or are exclusive to one group of people over another. I have had no colon for over 2 years now, and had my anal stump removal/sew up surgery about 3 months ago. In the time since colon removal I have ongoing problems with canker sores, random joint stiffening and a "rare" lung problem called BOOP (bronchiolitis obiterans organizing pneumonia) which took 7 months of prednisone to treat. All of these have been considered manifestations of my ulcerative colitis. Some doctors have said that episodes like these (and the others that are possible) may lessen the longer I am colon-less, while some suggest because my UC was so severe I may always struggle with a higher incidence of issues like this. My eye doctor is particularly vigilant in looking for eye problems, as he is surprised I haven't had any given the severity of my disease. So yeah, UC goes on long after the colon is gone, but for me at least....it is worlds better than UC life was WITH my colon!
Posted 5/23/2015 2:17 PM (GMT 0)
I agree UCwhat?!!!!

I'm a heck alot better without the colon. If I have issues is minor to what I had. Overall I got my life back. Unfortunately the disease now makes me paranoid when I get a tummy illness but I'm learning how to deal with it all. These session are alot different than my UC episodes. I just got to keep things in perspective.
Posted 5/23/2015 5:14 PM (GMT 0)
Think I've posted on another thread that pre to getting UC I had unexplained soreness. I had a big examination under GA after a year of trying no perfumed stuff in bathing or washing products and negative swabs for thrush etc. When I came around they told me they had given me a steroid injection into the area as they found this sometimes sorted these unexplained pains. I was indeed then pain free for a long period, but had proctitis within the year.

Thus, roundabout way of saying, I think you can get inflammation in this area and steroid injection helped.

I also believe I was vitamin B2 deficient at this time and that probably contributed to sore mucous membranes.
Posted 5/27/2015 4:21 AM (GMT 0)
Kinda surprised that no one has mentioned vulvodynia yet. A very common and often misdiagnosed condition that causes pain and uncomfortableness. Can be caused by inflammation, antibiotic use, vaginal infections. Then it's hard to make it go away because the pain continues even after the cause is gone. I'm thinking that there's a connection between UC and something like vulvodynia where the body's normal immune response is out of whack. There's a Dr. Oz clip about the condition online you can look up to see if it might be something to investigate. Most gynecologists are pretty ignorant about it.
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