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Posted 4/1/2008 2:40 AM (GMT 0)

Hi all!

I have not posted here in many months as I was trying to concieve and put UC out of my mind, but that has not happened on either count. 

Anyway, I have a question that I'm sure consists of TMI, but here it goes...

Over the weekend I had what I was sure a SERIOUS hemmoroid.  I laid down the entire weekend, I mean from Friday night until Monday morning.  I had a lot of bleeding and still do today.  I went to the doctor today (general practitioner) due to the persistent bleeding.  He said it is not a hemmoroid, gave me some antibiotics, told me to see me GI and sent me on my way.  He talked about fistals (sp?) and abcesses and ulcers tracking outside of your body.  I was in such a tizzy when I left I broke down in tears in the parking lot.  He said I need to see my GI immediately, which how often does that happen?  He mentioned that it was possible that my UC had manifested outside of my body.  Does anyone know what this means?

My doc is somewhat hard to understand and when I ask him a question it seems like he talks in circles, I often want to say, "Regular person speak please!!"  Anyway, I've been reading some websites and some of them talk about UC causing red nodules on your body, I have a few of these on my thighs and they are painful.  At first I thought one of them was a spider bite, but then the second one developed.  (one on each leg) They match in placement also.  Has anyone heard of this?  Please help if you can!!!

Tiggertenn

Posted 4/1/2008 3:37 AM (GMT 0)
A fistula is a track that opens up between two organs in your body (colon to bladder or vagina are two of the more common) or to the outside through your skin. They are more likely to occur with Crohn's than UC, and can be very serious. You truly do need to see your GI right away to get started on appropriate treatment.

Good luck, and keep us posted, tiggertenn.
Posted 4/1/2008 5:07 AM (GMT 0)
Definitely sounds like a fistula...I feel for you ... I have a friend who has fistulising CD.

What antibiotic did the doc put you on for the fistula?

You really need to get back to the GI for proper assessment and treatment of the fistula...both the abcess and the tract.  Fistulas would be an extraintestinal manifistation if it's related...especially to CD.   Hopefully it's just a once happening event. Do you have hemorrhoids? or fissures? Few of us with UC can get fistulas from an infected fissure or hemorroid..can depend on what else is happening aside from UC. Even people who don't have UC or CD get fistulas...but it depends on where it starts.  Some can be inside the body from organ to organ and not emerge to the skin. The primary infection/reason has to be dealt with. 

I would suggest you have either an MRI or at least abdominal ultrasound to make sure it's only one.

The nodules ( Erythema nodosum)  are related to IBD in general..more in CD than UC...but not necessarily  a determining factor of either. 


Please keep us posted as to the outcome and how you're doing. Now you have more questions than answers.

I have strong advice regarding getting pregnant.... DON'T until this is resolved.

quincy

Posted 4/1/2008 5:38 AM (GMT 0)
A fistula is a tiny channel or tract that develops in the presence of inflammation and infection. It may or may not be associated with an abscess, but like abscesses, certain illnesses such as Crohn's disease can cause fistulas to develop. The channel usually runs from the rectum to an opening in the skin around the anus. However, sometimes the fistula opening develops elsewhere. For example, in women with Crohn's disease or obstetric injuries, the fistula could open into the vagina or bladder.

Since fistulas are infected channels, there is usually some drainage. Often a draining fistula is not painful, but it can irritate the skin around it. An abscess and fistula often occur together. If the opening of the fistula seals over before the fistula is cured, an abscess may develop behind it.

Fistulas start from within the bowels and travel outwards typically to the anus but they can come out other areas as well, butt cheek, vaginal, ect, it's not likely a fistula would form from the surface of the anus due to a fissure or expecially a hemorroid....they come from internal, not external.

See your GI immediately as these are more prone to crohns disease and extreamly rare in UC.

:)
Posted 4/1/2008 11:53 AM (GMT 0)

Thanks for your replies.

I have an appt with my GI tomorrow afternoon.  I'm just worried he's going to tell me the worst.  I have a penchant for having rare complications with medicines and diseases, I'm the 1% when it comes to side effects, etc...

Anyway, someone asked if I have hemorroids and according to my doc yesterday, no I do not.  I am still in some pain when I first sit down and there is definite drainage and bleeding.  I'm a little scared, but trying to keep my nerves in check. 

Thanks for all the info and I'll let you know what he says tomorrow.

Thanks!

Tiggertenn

Posted 4/1/2008 12:09 PM (GMT 0)
You hang in there! Let us know about your appt.
Posted 4/2/2008 7:37 PM (GMT 0)
what did the GI say? how are you feeling? hang in there.
Posted 4/2/2008 8:13 PM (GMT 0)
It's probably too late but I wanted to let you know that it's okay to tell your doctor that you don't understand. If they still can't explain things to you in a way you can understand, you might need to find a different doctor. Good luck, I hope you get some answers and find some relief soon. I'm guessing it's fissures not a fistula.
Posted 4/3/2008 3:53 AM (GMT 0)

Thanks for all the replies...

I just got home from the GI.  He said it is a hemorroid and that I have to see a surgeon.  He game me a prescription for a cream to use and I also have to let the surgeon look at the red nodules I've had in case they have to be lanced (sp?).  I feel so lucky that it is not a fistula, I'm so glad I could cry. 

Apparently the very long (16 hours) car trip I took for spring break did not help matters.  He said that what happened was the hemorroid began to form and the blood clotted under my skin causing a thrombosis (sp?) which is what caused the majority of my pain over the weekend.  I told this to my Primary Care Physician, but he was adamant that I was wrong.  This is the second time he has upset me in two months, I'm never going to him again.  Anyway, he said to never drive for 16 hours straight again. =)  So, everything is good and I really appreciate you guys!

Have a great rest of the week!

Tiggertenn

Posted 4/3/2008 4:33 AM (GMT 0)
Well that's comforting...a hemmie is one thing to deal with, a fistula is a whole other ball game...what a relief for you, you could do lots of sitz baths with tons of epsome salts to help things along.

:)
Posted 4/3/2008 8:10 AM (GMT 0)
Wow...that's good news for sure!!!

Hope you feel better soon. Keep us posted regarding the nodules.

q
Posted 4/24/2008 11:29 AM (GMT 0)
This is an update....

I went to the surgeon yesterday and lo and behold he says, "oh yeah, that's a fistula."  I nearly came off the table.  Now he wants another colonoscopy before he does the surgery for the fistula.  So here I am with no days left at work (I'm a teacher), there's over a month of school left and to top it all off I think I may be pregnant, which I wold be ecstatic about, but it does complicate things more.

Has anyone ever had surgery for a fistula?  I was so thrown for a loop I forgot to ask exactly what the surgery entails.  I'm supposed to call them sometime next week to let them know either way about being pregnant.  He said if I am pregnant then the fistula surgery has to wait until my 2nd trimester and there will be no colonoscopy.  If not then I have to go ahead and schedule everything.  I know neither of these things is a big deal, but this constant not feeling like myself, shoving pills down my throat everyday and constantly running to the bathroom is taking its toll.

Any advice?

TIA

Posted 4/24/2008 3:43 PM (GMT 0)
Get a second opinion from a GI - not a surgeon. I had a fistula and there are medications that can help it close up. Surgery should be a last resort. It is not always successful and creates other problems. (If you are pregnant, however, the medications probably should not be used.) I had cyclosporine, but it was over 10 years ago. At the time, I was told that infliximab was nearing approval and would be helpful should I ever develop another fistula. (It is rare - but fistulas do occur with UC, not just Crohn's.)

I don't understand why there is uncertainty about whether or not it is a fistula. If it is, there would be gas and fecal material coming out through the opening. (I found it truly disgusting - I had diarrhea and some would seep out the vagina.)

It is important to get another opinion and be sure of what is happening.

Good luck to you.

M
Posted 4/24/2008 6:49 PM (GMT 0)
Hi Tigger,
I missed this post before because I probably skipped it because the subject title was so vague. Anyways, the very first thing I would do is find out for certain if you are pregnant or not....
I had a sigmoidoscopy while pregnant with no problem. How have they determined you have a fistula? Do you have stool draining out somewhere or did they do a sigmoidoscopy? I would find some new doctors and make sure you don't have Crohn's. You have 2 symptoms of Crohn's. Remicade is very helpful at closing fistulas but it is not recommended in pregnancy. My GI told me that my 1 inch deep ulcer has not opened into my vagina yet, (he checks it when I have a sigmoidoscopy or colonoscopy) but if it does open, that I need immediate surgery.... Although I have heard of people not getting surgery for their fistulas on the Crohn's board. The Crohn's board can offer you a lot more info on Fistulas than this one since fistulas are not common in UC. Try not to freak out too much. I know how it is to get such shocking sudden news. The next step is either surgery or aggresive meds like Remicade if you do have a fistula, depending on what your GI says. I would make absolutely sure these doctors are right that you have a fistula. Where is the fistula coming from and going to and what tests were done to find it? What surgery would they do? A resection or a repair or what?
Posted 4/24/2008 6:58 PM (GMT 0)
An abscess is a localized pocket of pus caused by infection from bacteria. It can occur in any part of the body. When bacteria seep into the underlying tissues in the anal canal, an abscess may develop. Certain conditions, such as Crohn's disease (chronic inflammatory bowel disease), can increase the risk of abscess in and around the anal canal. Patients with conditions that reduce the body's immunity, such as cancer or AIDS, are also more likely to develop anal abscesses.

An abscess causes tenderness, swelling, and pain. These symptoms clear when the abscess is drained. The patient may also complain of fever, chills, and general weakness or fatigue.

A fistula is a tiny channel or tract that develops in the presence of inflammation and infection. It may or may not be associated with an abscess, but like abscesses, certain illnesses such as Crohn's disease can cause fistulas to develop. The channel usually runs from the rectum to an opening in the skin around the anus. However, sometimes the fistula opening develops elsewhere. For example, in women with Crohn's disease or obstetric injuries, the fistula could open into the vagina or bladder.

Since fistulas are infected channels, there is usually some drainage. Often a draining fistula is not painful, but it can irritate the skin around it. An abscess and fistula often occur together. If the opening of the fistula seals over before the fistula is cured, an abscess may develop behind it.

Maybe you have an abscess...I would get a second opinion too.

:)
Posted 4/25/2008 1:22 AM (GMT 0)

I believe that it is a fistula.  While I was being examined yesterday he put a probe through it and believe me it went right to my colon.  It has been draining and it is very disgusting.  My general practitioner actual did a swab of it and the test did come back positive for e-coli.  The doc I went to is the top in his field and quite sought after.  I'm confident in him.  He said he would cut into the fistula, clean it out and let it heal "from the bottom up."  He also said that  anyone can get a fistula and that they are not as rare in UC as people like to think. 

I was just curious if anyone had ever had one of these taken care of before.  The location of it is from rectum to above the anus.  Does that make sense?  I'm still a little baffled by all the names of everything inside....

Thanks for all your help!

Posted 4/25/2008 1:44 AM (GMT 0)
Fistulas can form anywhere in the body, and there are three basic types, referred to as blind, complete, and incomplete. Blind fistulas have only one open end, while complete fistulas have openings externally and internally. Incomplete fistulas have an external opening but don’t attach to anything.

:)
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