I need to vent!

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descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 10/18/2007 7:16 AM (GMT -7)   
Well after feeling the best that I have EVER felt in the past 2 weeks....I am back in a flare!  I was doing GREAT!  My Fissures were finally starting to heal, my fistula wasn't painful and I had NO stomach pains! (I should have known it was too good to be true!)  Now I can't eat anything! I ate 2 slices of bread with mayo last night at 8PM and I woke up in horrible pain at 1AM.  A whole 5 hours later!  It was the first night that I was able to go to bed early and sleep on top of it all.  I am trying to take ensures and nothing else but even those are making me sick!  My fistula is killing me.  I feel so much pain and every once in a while I will get this really sharp intense pinch in my bottom that will make me drop whatever it is that I have in my hands and hold on to something so that I don't fall from how bad the pain is.  It will only last a few seconds but it's really intense and it comes out of nowhere!  I can't do this anymore!  I can deal with the stomach pains and diarreah if I have to but the fistula and fissures are just out of control.  The stomach pains go away after a few minutes of going to the bathroom but the butt pain stays for hours!  It's so intense!  The doctors can't do much for me.  They want to give me a fistula plug but that can't be good now when its leaking and in extreme pain.  I am afraid of getting another abcess.  To top it all off I had a friend of mine tell me that it's all in my head and I need to have positive thinking.  If I wake up in pain, I need to tell myself that it doesn't hurt and just keep going!  I also need to not complain as much about how sick I feel and when people ask me how I feel I need to say fine because no one ever wants to hear that I don't feel well.  She also proceeded to continually tell me that she was so angry and upset that I felt this bad.  That she did not understand how I could be doing so well one day and then completely sick the next day.  I lost it this weekend.  How dare she or anyone tell me that they are angry that I feel this way.  That I have to suck it up and lie to people about the way I feel and that I need to have positive thinking.  I flipped!  I told her that this has nothing to do with positive thinking.  I get up and go to work when I can and if the pain is tolerable then I tolerate it but what am I supposed to do when the pain is so bad that I can't function?  If you see me struggle to get up from a chair or sit down am I supposed to lie to you and tell you that it does not hurt when you ask?  I don't go around telling people that I am sick or complaining but if someone asks, especially if they are friends that I speak to almost everyday, then I should be able to say, not good!  What gets to me the most about people like her is that they speak without knowing.  Her sister has MS and when I compared this disease to that one she nearly bit my head off saying that they were completely different things!  I told her absolutely not, that they were actually very similar but just in two different places in the body.  She went on to tell me that her sister and her had Crohn's for many years with the diarreah and the bloody stools and then all of a sudden it went away and that they doctor told them it was a miracle that they no longer had Crohn's.  Since it was not the first time I had heard this, I finally lashed out and told her that she was misdiagnosed because Crohn's doesn't go away like a miracle and that if she trully had Crohn's then she would know what it's like to be fine one minute and not fine the next!  I understand people can get frustrated that they see me in constant pain and discomfort but don't go around telling me that it angers you.  You can feel helpless and frustrated but I am the one in pain so the only that has a right to go around saying that they are angry is ME!!!  Sorry soooooo long and thanks for letting me vent! I needed that!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 10/18/2007 8:05 AM (GMT -7)   

You're always welcome to vent here--that's part of what this site is for. I'm so sorry that you've had to deal with people who don't understand and have such limited patience.

My only suggestion comes from lots of experience. I'm determined not to lie about how I'm feeling, but I also don't want to be perpetually miserable (both for myself and for the people around me). So when somebody asks how I'm doing, I grin and very cheerfully say something like the following: "I've been better--but I guess I could be worse, too" or "Trust me, you don't want to know" or "Actually crappy, but I'll live" or "Hey, at least I'm here." If that's all they want to know, they'll just move on; if they really want to know more than that, they'll ask. Mostly they don't ask. They all tell me that they're impressed that I can maintain a sense of humor in a chronic situation--and I'm relatively satisfied because (a) I haven't lied and told them things are fine when they're not, and (b) I haven't made the mistake of revealing too many details to people who don't really want to know them. But I've left the door open to anyone who wants to know more.

This can be a very lonely disease sometimes. Sometimes it helps to write down how you feel. I wish you better days and better friends.

 


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 10/18/2007 8:38 AM (GMT -7)   
Thanks. My answers are usually ones like yours. I don't ever go into detail unless they ask and even then my details are usually that my butt hurts or I need a new one. They want to hear me say that I feel fine. This is supposed to be a dear friend that I speak with everyday. When a person I don't speak to very much asks, my answer is always pretty good. I don't like bothering people with my issues because at the end of the day no one gets it but I do expect my close friends to be there and allow me to vent if I need to... I guess that you realize who you can count on when the going gets tough!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


rkilcher25
Regular Member


Date Joined Jul 2006
Total Posts : 144
   Posted 10/18/2007 8:40 AM (GMT -7)   
i am so sorry that you had to listen to that crap.  I too have the exact same problem as you.  I have had neverending problems with fistula's.  I had my last surgery in may to have a permament c-ton put in and for about two months or so everything was good.  I had no pain and even my stomach pains were almost completely gone.  Well i shouldn't have held my breath cuz it went from great to terrible.  All of a sudden i started getting sharp pain down there.  I would be just sitting there and all of a sudden it felt like somone was sticking a knife up my butt.  Then it just started hurting non-stop, a itchy, burning, sore feeling almost all day and to top it off i would get those stabbing pains too. Then the stomach and diaherra came back.  I thought for sure i had an infection so i went to the er one night went i couldn't take the pain anymore.  They did ct with barium and it showed nothing, no extra fistula, no abcess, nothing.  It can be sooo frustrating because I couldn't believe that there was nothing extra wrong while there was so much pain, especially since it didn't hurt before that for a while.  I still don't know where the pain is coming from and i often just want to rip that c-ton out to stop it.  But then i know that doing that will prob. end up causing an abcess and i know i don't want that again.  I haven't had anyone say to me anything like you did but i do have people blow me off when i talk about it and just change the subject.  It make make you feel all alone and depressed, like no one cares.  I know my husband does care but he will never understand what i go thru everyday since he doesn't suffer from crohn's.  I have often told him that i wish he could just feel what i am going thru for one day so he can truly understand.  Listening to your post has actually made me feel a little better today since i know that i am not the only one with this specific problem with no anwsers and no understanding for the pain.  I hope you stay strong and remember that you are better than that person because you have the strenght to go on ever day despite how you feel.  And by the way your friend that said that obviously isn't much of a friend.
26 years old
dx with crohn's at 23
Fistula seton surgery 2006
Advancment Rectal Flap surgery 2007
Fisula seton surgery 2007
 
 


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 10/18/2007 10:57 AM (GMT -7)   
Thank you for letting me know that I am not the only one with that pain. It's so frustrating because it just comes out of no where. I hope you feel better and we get out of this mess. One thing for sure, I am completely watching what I eat when I feel fine because I can honestly say that I went nuts the past 2 weeks. It's so hard not to when you feel so great but this was a BIG wake up for me!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 10/18/2007 12:00 PM (GMT -7)   
I am so sorry decrapster that you are going through that and that your good friend tripped out on you. you have the right to feel like how you feel and NO one has the right to tell you how angry they are at YOUR sickness or that you need to think positive and the pain will go away. you will know who your true friends are through this. It happened to me and I had to unfriend one of my good friends since the 7th grade. 20+ year friendship. It was AMAZING to me how MY problem made her turn into some know it all beast and how I warned her to knock it off and drop it and she just kept on giving me her negative opinions instead of being there for me.

I noticed with our society that people ask how you are doing but don't really CARE what you say. It's like a polite nicety when you meet someone. I remember telling people that I was "fine" cause I was tired of them asking me how I was. Then they probed and so I told them that I was not fine and then they were like. Wow you haven't been fine for a while. DUH! so quit asking me how I am if you don't want to hear.

I also understand your feeling like you're tired of being sick. We did not choose this disease. It's understandable to be cranky and angry and sad all at once and want someone in your circle ANYONE to actually sit down for one day and "hear" you out and try to feel your pain both emotionally and physically.

Hang in there and feel free to vent here. We know what you are going through. I don't know the pains that you are going through physically but I can empathize with your feeling of being alone. There are others like us on here. And it feels good to not feel alone even if we are just "virtual" support and not physically with you. <hug>

I hope you feel better soon. =0)

Take care
Newbie - 35 yrs old Diagnosed: 08/03/07
Meds:
Asacol 3x day
Imuran 50MG 3 x day
Lamictal 125 MG/day for bioloar II


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/18/2007 3:04 PM (GMT -7)   

I know what you mean, I also had a relapse while feleing so good... it sucks!!

People really think they are experts. I have them too. I have a firend that was mad because I did not want to go to her party when I was sick. She has no idea how run down I felt and Alcohol and junk food and being outside in the heat would have made me so much worse.  (it was a memorial day party)

 

Hang in there, hopefully you will be better soon…

 

Karen

 


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, waiting on a EMG nerve test right now...

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