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Posted 9/10/2013 3:05 PM (GMT 0)
Hey...You don't sound your normal self in the last few posts I have seen.  You seem more down than usual.  Are you doing OK?  Hope you are just in a little rut, but a little worried about you.

Take Care

Posted 9/10/2013 5:03 PM (GMT 0)
I was also thinking about you. You deserve a break after so many years of flaring. Hope you find something works better for you soon, take care!
Posted 9/12/2013 5:44 AM (GMT 0)
Hi Habs, no, not really doing ok, don't know what to say or how to explain other than it's just getting to me and I'm losing my grip more and more with handling CD life.

Thanks big betty, I don't think I'll likely find anything though, kinda lost hope on the chances of that ever happening.

Thanks both for your concern and well wishes, I'll have to try and work a little harder at hiding my misery because I don't want to bring anyone else down...everyone has enough problems.

Both of you take care
Posted 9/12/2013 2:13 PM (GMT 0)
Hey PB4. Sorry you're having such a rough time.

I do have one question though - have you ever tried the biologic medications? I know you've been the gamut of the others, but I wasn't sure if you've tried the biologics. I know they are scary, but maybe if your quality of life is really bad right now, that is a choice to consider?

Not trying to sell drugs to you, just wanted to see if there is some avenue that may help with the CD.

Hang in there. (((Hugs)))

PV
Posted 9/12/2013 2:47 PM (GMT 0)
He pb4,
You shouldn't have to hide your misery here. For me, this is my one safe place to really be myself and vent away. That's what we are here for. I don't unfortunately have any advice...just saying I've had my difficult periods of time and I feel your pain! Take good care, and let us help if we can.
Posted 9/12/2013 3:22 PM (GMT 0)
Thank you PV and gumby44,

PV, I asked my GI years ago about biologics and he said I wasn't a candidate...guessing because I was having formed BM's, no fevers, no stomach pains, just major frequency and urgency...biologics were still new then so maybe he was treading with caution or that was the protocol set up for biologics at that time, IDK.

What's freaking me out lately (on top of life in general with CD issues) is I've been passing air/gas? through my vagina...and I'm terrified that it's the first signs of a fistula, which in my 22 yrs of having crohn's colitis I've never experienced and I'm so upset about that right now too...I always knew I'd be at risk for one especially since my CD affects my colon and my anus with perianal crohn's skin tags but I guess I unrealistically hoped if it hadn't happened before now, it never would and I really don't have any desire to get it checked out because I feel so hopeless and so detached but I'm sure if I don't I'll pay for it big time.

gumby,

I know I shouldn't but at the same time if I really let loose then I'm sure I'd be condemned to a nut house cuz I feel like that's where I should be (if anywhere) and I hate the idea of bringing others down, I hate whining even if I have reasons to, I'm just so miserable and have been for years and have tried to be as positive as possible and push the negativity way deep inside but it's just getting harder all the time.

I hate this disease so much, it literally makes me sick that anyone has to exist like this, it's cruel and disgusting and we don't deserve it.

Just very overwhelmed and can't seem to find strength from within myself anymore...completely deflated and defeated.
Posted 9/12/2013 5:05 PM (GMT 0)
I'm sorry about the RV fistula. :( I have one, too. But honestly, it's actually a lot better than some other places a fistula could happen! I had a draining seton put in, and I don't even notice it hardly now.
Posted 9/12/2013 5:42 PM (GMT 0)
pb4, I'd ask your doctor again about the biologics. I think that a person's quality of life MUST be considered when evaluating whether or not someone is a candidate. And, if you do indeed have a rectovaginal fistula, I know that the biologics can sometimes heal them.

If he says no, and you think you'd really like to try a biologic, I'd find a new doc. From what I've seen, people who have less trouble managing symptoms than you have been Rx'ed them.
Posted 9/12/2013 6:44 PM (GMT 0)
Hey pb...don't try to hide your misery!  I just wish there was more we could do for you.  I am thinking about finding an outside person to talk to....maybe you could too????

Wishing you better days and sleepful nights

 

Posted 9/12/2013 7:14 PM (GMT 0)
Thanks scifigal, that's encouraging news, I hope if I am developing one my luck is as good as yours seems to be with it, none the less, it terrifies me because I've never had one but I know something must be going on to be feeling air passing through my vagina when I'm passing anal gas....just grosses me out and equally freaks me out...plus thinking back on all the horror stories people have shared with their experiences doesn't help me.

Thanks FG, I recall you having a recto-vaginal fistula quite a while back and know you had a second baby sometime after your fistula experience (brave IMO) I just feel like I have the worst luck...can you share again the symptoms you started having at the beginning of your fistula so I can compare (I don't recall all the details) I'm playing the typical denial game with myself, I feel this air escaping when I pass gas but I want to convince myself it's not what I think it could be and it'll just go away on it's own. I just don't think I have anymore strength in me to deal with one especially the way I've been feeling emotionally/mentally and even physically for the last while.

Habs, thanks again...I know I can share my misery, it just doesn't make me feel any better, makes me feel worse because I hate any kind of attention like that it makes me feel guilty and awkward, I don't know why, it just does, guess I'm weird that way too. I don't know about finding an outside person, that would require me leaving the house and I struggle with that as it is for when I have to go out and honestly I don't have faith in much of anything anymore...too consumed with anger, sadness and frustration....I'll have to figure something out at some point, right now I just want to curl up into a ball and roll away from life.

Thanks guys for the advice and well wishes, I wish I didn't have to seek out any of it...but I appreciate it very much.
Posted 9/12/2013 7:25 PM (GMT 0)
pb4, I just had a "regular" perianal fistula that developed from perianal abscess (if I remember correctly, about 40% of abscesses turn into fistulas). My GI and my colorectal surgeon both think it was not at all related to my UC, since it'd been in remission for a couple of years prior to me developing it and I wasn't flaring at the time it developed. Incidence of perianal abscess/fistula is fairly common in the general population, and I actually have a pretty strong family history of them on my mom's side, as it turns out.

I'm almost positive that Eva Lou has a recto-vaginal fistula.

Does your GI know how much your CD affects your every day life? And how it's affecting you emotionally/mentally? If not, I think you should let him know.
Posted 9/12/2013 8:55 PM (GMT 0)
I really hope you get checked out for a possible rv fistula. I too was in denial about my flare. I just thought if I sucked it up it would get better. It did not just worse and worse until I could not ignore it anymore. If you catch it early, they can intervene either with Meds or setons. There is a very high likelihood they will resolve with treatment. I know it is scary, I hate rectal exams and they may do some imaging as well but it is good to know. and, if you don't have fistulas, you will be so relieved.
Take care!
Posted 9/12/2013 9:22 PM (GMT 0)
FG, thanks, I for some reason thought yours was recto-vaginal (any kind would be horrible to have) I think my GI knew that I was struggling because I even told him that for me to see him I have to be in a pretty bad way since I hate seeing him regularly because it's always so disappointing to leave the appointment no further ahead (I find it a waste of time and not worth all the effort it takes to get there).

Smd, I will if things continue this way much longer then I will get it checked...the weirdest thing is I'm not passing gas out of the vagina every time, if I'm on the toilet I never feel it passing out of there, only when I'm laying in bed or sitting/laying on the couch/chair and it's got a weird gurgling sensation to it (I figured because it's not where gas is suppose to escape from) and sometimes it feels like there's a normal vag discharge but when I pat with toilet paper to check, there's nothing there....I feel like I've completely lost my mind.

I've also been having some cramping across the lower ab but I was having that on and off for about a year now...this morning with my first bm I got horrific cramping in both the anus and vagina and it was in my very low pelvic area, nothing in the tummy region (if that makes sense) I've had that kind of cramping there before quite a few times over the last couple of years.

Normally I would have had 6 or more BM's (including just mucus) by now (I've been up since 9 am) and I've only had 2 each time with small rock hard stools and with a bit of mucus) I've also had less gas than usual and when on the toilet I never felt anything (air or stool) passing through my V...it's kinda freaking me out because it feels like a calm before the storm type of deal.

I started feeling this gas/air about a week ago, I've had intercourse in that week and each time never felt anything odd or more uncomfortable than usual so I don't even know what to think...I do know I have to get it checked especially if it continues but I honestly have no desire, at the same time I don't desire having to tend with a stupid fistula either....I hate this disease.
Posted 9/12/2013 9:29 PM (GMT 0)
I also started taking a stool softener the last 2 nights because my BM's have been getting too firm and I know I have to be careful with stool softeners because your system can become dependent on them...I just hope I can get all this yuck figured out and start feeling human, it just seems impossible that it will ever happen though.
Posted 9/13/2013 7:21 AM (GMT 0)
I don't notice the fistula during intercourse, I never did. Do you have a fever? Any discharge? Are you passing feces through the fistula?

If you do have a fistula and don't get it taken care of, then you run the risk of one side healing but not the other, and then an abscess forming.


Biologics are great at healing fistulas, Remicade especially. If this doesn't kick your GI into letting you do them, you need a new GI.
Posted 9/13/2013 4:24 PM (GMT 0)
Hi scifigirl,

No fever, no abnormal discharge and no passing stool through the vagina.

Did yours start with air/gas passing through your vagina? Is that how they typically start? Is there anything else besides a fistula that can cause air to pass through the vagina?

Thank you so much.
Posted 9/14/2013 3:22 AM (GMT 0)
I actually started with a perianal abscess that when they cut and drained it never healed all the way up and then broke through into the vagina within a week. I had a very, very mild fever but had a discharge that they originally thought was a yeast infection. But I noticed gas passing through pretty fast. Stool only passes through if I'm having D or extremely soft stool (as in they disintegrate when I flush the toilet).

The biggest key for me in noticing the gas and the relationship was when I tried to hold the gas in, if it would leak out and come through the vagina instead.

The only thing I can think of that would make gas come out vaginally other than the fistula is if you somehow got air trapped up there during intercourse. Or sometimes it can be small amounts of discharge that seep out in super small quantities that almost feels like gas.
Posted 9/14/2013 4:38 AM (GMT 0)
Okay, thanks scifigal...I have to get my gamily doc to refer me back to my GI cuz I haven't seen him in a while so we'll see what happens I guess.

Thanks again
Posted 9/14/2013 4:54 AM (GMT 0)
Hi pb4, I'm new to this forum. I hope I'm not being intrusive, but your posts just kinda grabbed my heart lately. I just want to say something that is really changing my situation is the SCD diet. If you've already given up processed, junk, and fast foods, which it looks like you have, you're halfway there (none of those things on SCD). Anyway, I've been in your super "feeling down" state, I know how it feels, so I just wanted to throw that out there. The book, Breaking the Vicious Cycle by Elaine Gottschall, made a lot of sense the first time I read it and it is really working for me. Love and hugs to you!
Posted 9/14/2013 9:44 AM (GMT 0)
Good luck! Let us know how it goes!
Posted 9/14/2013 12:09 PM (GMT 0)
Hi there,

Passing gas vaginally is a sure sign of a fistula/abscess.  If you look at the bright side at least remicade will help fix this right up.  I hope your GI sends you for an  MRI with the dye as that is what I always have done to find these nasty things. 

As another long term crohns patient I get that it gets old fast, but hang in there things will improve. 

Julia

 

Posted 9/14/2013 5:28 PM (GMT 0)
Hi anna, Welcome to the forum (sorry you have to be here too) no, of course you're not being intrusive at all, I appreciate your feedback and the love and hugs, thank you very much. I'm glad her book is helping you, I have it as well, just don't know where it is at the moment lol.

Thanks scifigal, I will and thanks for the wishes of luck.

Hi Julia, Thanks, but I've also heard some horror stories about Remi, maybe I'll finally have luck with something since nothing else (other than pred) has ever helped with symptoms...pred eventually stopped working though too, this is why I'm in such a catch....being either allergic or non-responsive has it's pros and cons. I guess we'll see what happens, it's just a matter of how long before I'll get to actually see the GI again now. I've been hanging in there for a while, it's getting on my nerves but I don't have much of a choice I guess. Thanks again for the support.
Posted 9/16/2013 2:06 AM (GMT 0)
Very sorry you're going through this, pb.
Posted 9/16/2013 9:25 AM (GMT 0)
Just wanted you to know that I have had this gas/air problem off and on for short spells over several yrs. First time was when I had my 3rd child. Scary, and when I told my OB/GYN he really didn't believe me. Lasted about a month that time. Each time I had this happen, it would clear up on it's own, no pain, fever or drainage. Hopefully yours will too. My biggest worry was getting UTI's.
Posted 9/16/2013 4:48 PM (GMT 0)
Thanks tinglebell,

I'm freaking out a bit right now cuz I recently woke up and I'm feeling so much gas and air in my guts and it feels like my lower back too. I had a small poop then a bigger one and as far as I can tell they came out of the anus but I'm getting really freaked out about all this gurgling I'm hearing and feeling in my belly.
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