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Hi guys....quick update
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mindyj1971 posted:
So I saw my gyn today about the cyst that ruptured on my ovary last week. He did a vaginal ultrasound and exam....told me that my fistula is draining again. Saw fecal material in my vaginal tract:( Will be seeing GI tomorrow. Not sure what he will do...there is still a pocket of fluid in my pelvis, so probably won't be able to start me on a biologic. With my first fistula, I was on cipro and flagyl for a few months before starting on Remicade. He may decide to send me back to surgeon...I don't know! GGGRRRR.....I certainly don't want to go back on the cipro and flagyl combo...puke! But, I know that he is gonna want to put me on some kind of antibiotic to make sure this "pocket of fluid" is not infected and is totally cleared up before putting me on something else that will suppress my immune system.

I'll let you know what I find out tomorrow at GI office:)
Hope you are all doing well....
HUGS!
Min
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larsstarscanary responded:
So sorry you are having all of this trouble, Mindy. But I'm glad to hear how courageous you are!
 
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hannahleigh89 responded:
Hmm... This has happened to you before, prior to the removal of your colon and rectum, if I remember correctly. I'm somewhat confused how there is fecal matter passing through your fistula to your vaginal tract... How large is the fistula? Because you now have an ostomy, so there shouldn't really be any fecal matter down that far in your abdomen... It's late and I haven't been sleeping well, so I'm sorry if I'm completely misunderstanding this right now. It just seems strange to me. When your rectum and colon are down there, sure, that makes sense. But all you have is small intestine, and it isn't connected down there any more...

At least it's just a fistula. I know that's a strange thing to say because they're horrid things, but you've made it through it before and you can get through it again. At least you aren't using your anus to pass wastes anymore, so once you get started on treatment or even if you need surgery, it shouldn't take as long for it to heal this time.

Have you been running a fever or having any extra pain lately?
 
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mindyj1971 replied to hannahleigh89's response:
Hannah, you are reading my mind! I'm totally confused, too! Now, I can't wait to ask my GI about this. The only thing I can think of is that a fistula has formed between my small intestines and my vagina....I have no idea. I haven't noticed any fecal drainage....just blood, and that is tapering off now. But, the gyn said he saw it when he did his exam. I don't know how big it is or anything. In my original CT scan report, everything said it could be an abscess or it might be a fistula, cyst..etc....nothing was concrete.

I haven't had a fever since about day 3-4 of bleeding from the ruptured cyst. I have had a little bit of pain near my ostomy, but that is where the very small pocket of fluid is.

I'm so tired of trying to figure out what the heck my body is doing. I'm sure that some more imaging is in my future to see for sure what is going on. I'm gonna be glowing in the dark before too long!

Hope that you are doing well, Hannah:) I think of you often:)

Thanks to everyone for being here for me, as usual....
HUGS
Mindy
 
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JavaMamma27 replied to mindyj1971's response:
Geez Mindy! I can't imagine! I know how hard my struggles are, and being a mom just makes it so much more! My heart goes out to you and your kids. I hope you guys have some close friends and family to help.

I think the hardest part for me is seeing how my health effects my kids. I can deal with how it effects me, but when they are upset that I am too ill for stuff they want to do it tears my heart out. I know you must be feeling the same way.

It isn't fair. I hope you can get this figured out soon! (((Hugs)))

steph
 
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mindyj1971 replied to JavaMamma27's response:
You are absolutely right, JavaMamma...when I can't do the things that I used to be able to do with my kids....it crushes me! We haven't been on a family vacation in over 2 years. Every time I am hospitalized, they stay with my mom or my sister because of my husband's work schedule. The get shuttled all over the place and I know that they hate it! I can't go to the zoo with them or an amusement park or anything like that, because I get to worn out! They have been amazing through it all, but I know that it is affecting them. I dread the day when I hear them say to their friends..."No, we can't do that cause my mom is always sick..." Oh, it just kills me! We were such an active family before all of this happened....and now.....nothing!

I did see my GI today....he is sending me for blood work and will do another CT scan in 6 weeks. At that time, depending on what the CT scan shows, he is wanting to start me on Cimzia; but only if the pockets of fluid are completely gone. If they are still there, I will probably have to go on flagyl and cipro for awhile. Since my body reabsorbed some of it, he wants to give my body a chance to do it again. I am under strict orders to call him at the first sign of pain or fever, so that we can schedule the CT sooner, if need be.

I will try to get my lab done this week....I am anxious to see what my sed rate and C-reactive protein levels are. Last time I had them done, they were darn near normal:)

Thanks my Crohnies!
Mindy
 
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Magsjeanea responded:
Mindy, I am so sorry that you are having further problems. All we can do is pray that you will recover quickly so you can feel better and start playing with your babies again.
Take good care,
Love Goes There, Mag's Jeaneau


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