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Need advice on possible fustula/blockage

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Crohn's Disease
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Posted 9/26/2007 2:50 AM (GMT -8)
Hey again,

 

So i have bad rectal cronhs and have been dealing with this bout of it for 2 years now.  Got on 6mp 2 months ago (after nothing else really working) and just a week aga increased the dose to 75mg.  I had one remicade treatment about a month ago also, and felt better for 2 weeks.  My bleeding is better but not gone.  What i still have is mucous and loads of air.  I also have the immediate urge to go about 15 times a day (down from 40) but am mostly constipated!  I am on mitilax and that helps some.  I had a colonoscory in June and it did not show bloackage or fistula.  Now, however, i am concerned.  When i have to push bc i feel i have to go, after i feel all full of pressure and swollen.  So much so that i throb.  Im talking rectally and vaginally.  It feels like i need an ice pack.  Its not just localized either, its all around.  (sorry if this is too graphic)  Anyone EVER felt this?  Doc says he thinks its still just the inflimation.  But i feel when i push and nothing comes out that something odd is going on.  Is there some non invasive test to see if i have the start of a blockage and/or fistula?  Thanks for any help!

Posted 9/26/2007 2:54 AM (GMT -8)
Also, often this pressure has an effect on my urinating and at times i have a painful sensation inside my vagina.  Again sorry if too graphic, i just wanted to get out all the facts out there so i could get your input back. 
Posted 9/26/2007 3:39 AM (GMT -8)
Don't worry, nothing is too graphic here! I would definitely ask about some rectal meds, if you aren't on any.

Also, why did you only have one remicade treatment? You should of had the 3 "loading" doses (unlesss of course you had a reaction), and then continued from there. I had really bad rectal crohns issues also, and when I started imuran and remicade almost 3 years ago, it gave me my life back!

MRIs are probably the best at finding fistulas. It is not surprising that they didn't find any during your scope, they can be very hard to find. Hang in there!
Posted 9/26/2007 4:00 AM (GMT -8)
The doc was hoping for one dose of remicade to get me over the hump til the 6mp kicked in. I go back to him in a month and maybe will start the real deal of remicade or humira. I did the rectal meds in the past and got no help from them.
Posted 9/26/2007 5:17 AM (GMT -8)
Because of your feelings of pressure, I would be looking for an abscess if I was your doctor (which usually are caused by a fissure or fistula). Unfortunately, they don't often show up on tests, but he should be looking and maybe get a little more agressive with your treatment. Possibly a course of antibiotics may help also. But you definitely need to let him know your symptoms, as graphically as you need to get to make him understand.

Good luck, let us know what happens.
Posted 9/26/2007 8:10 AM (GMT -8)
Btw, i have been running on and off a slight fever of maybe 99.  However, my blood work shows i am fine so i think thats why he doesnt suspect infection.  I made an appointment with my gyno.  Maybe he will take it on a little more aggressively.
Posted 9/26/2007 9:54 AM (GMT -8)
6MP takes 3 to 6 months to kick in at its best, so it sounds like you need something that will affect the inflammation in the meantime. Has your doctor tried prednisone or Entocort, or an antibiotic such as Flagyl or Cipro? Many times, it takes several meds at once to get things under control.

Inflammation can definitely cause the symptoms that you feel. I've had the same problems. When your gut is swollen, it doesn't allow things to pass through as easily and can actually cause an obstruction, so I hope the doctor is keeping a close eye on you. 6MP can mask an infection since it lowers the immune system, so I hope he takes that into consideration when looking at the tests. Take care. I hope the gyn. helps.
Posted 9/26/2007 11:22 AM (GMT -8)
If you hve an abscess your wbc is usually elevated. A ct scan usually detects an abscess....at least they always have seen mine. Most people who start remicade don't notice any difference until the 3rd, 4th, or 5th infusion....

Have you ever tried flagyl? It works really well for my rectal issues.
Posted 9/26/2007 11:35 AM (GMT -8)
I was on prednisone and it didnt help.  It just made me a monster!  I admit i am not too open minded with some medicines and im not willing to try entocort either.  Flagyl i have never been on.  I thought that since i didnt have an infection, it wouldnt be helpful.   Maybe ill mention that.   How does 6mp mask things?  If blood tests come out good can something still be masked?  Oh also, i think the remicade just helped with my crazy fatigue for 2 weeks.  Now im exhausted again.
Posted 9/26/2007 12:22 PM (GMT -8)
Jusdebbie,

It's my understanding that remicade is similar to antibiotics, that if not used at the correct intervals or used and stopped it can lead to your body becoming immune/non-responsive to it.

I know the feeling (i think you're talking about) when you know there is probably nothing of substance up there but when you push it feels like something is about to come out, yet nothing does. And when you clamp it shut, it feels almost as though something went back in. I've always wanted to see what was going on back there with a mirror but am too scared to actually "see" it.

I'm one of those people that pass out if i see or hear details about things wrong with me down there. My sister once was discribing a syst (prior to being diagnosed) in my anus area and I ended up passing out. It was the only time I've passed out.
Posted 9/29/2007 3:19 AM (GMT -8)
Thanks for all your replies.  I am now having a ct scan on Tuesday.  I already picked up the 2 bottles of chalk to drink!  (I didnt know that was part of the ct scan as well as the die).  Im a little afraid cuz last time i had a small bowel series and had to drink that stuff it took 5 hrs for it to get far enough down for them to start the xrays plus it wouldnt come out of me!  I had to drink some nasty green bottled stuff as a laxative to move it thru.  Ahhh, oh well!  So now i have a few new questions...  Could this barium be a problem for me?  (Im a little concerned bc its my gyno that ordererred it not my gastro).  Will the ct scan show if i have a partial blockage, a fistula, and or an absess?  What exactly is it capable of showing?  I hope this will be the last test for a while and i will be able to know if anything more is going on.
Posted 9/29/2007 5:48 AM (GMT -8)
If you have a partial blockage they can use a different radioactive dye instead of the barium. Barium always dries up and causes a blockage for me, and I end up in the ER. I think you should contact your GI before taking it. The other stuff is clear and oily and comes out the other end much easier. I wish I remembered the name for you.

I've seen some people on here say that 6MP only "masks" symptoms, but truthfully any of the meds we take treat symptoms only as there is no cure. The meds we take for this disease is to buy us time, and hopefully put us in "chemical remission." I've had a lot of success with 6MP in the past for periods of time, you just have to give it time to work and work with the dosage a little. Remicade worked very well for me until I built antibodies against it and had to quit taking it. Flagyl also works well for acute flares most of the time, meaning it helps lessen the symptoms (mostly pain). And while I absolutely hate Prednisone, it has it's place. It's the only thing that gives me FAST relief from the symptoms. You just have to make sure you and your doctor are on the same page regarding the fact that it should be a temporary medication until something else has time to kick in.

So in a nut shell, none of the meds will cure you, they will hopefully buy you symptom free time so that surgery can be put off.
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