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Crohn's Disease Forum » Support Forum » Vent Away » Frustrated and Confused -looking for support


10-25-2013, 06:23 AM   #1
soccermom081105
 
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Frustrated and Confused -looking for support

Hi, I just wanted to see if anyone else is FRUSTRATED with this disease and/or their doctor. To give you an idea where I am going with this, recently I have had a bout of vomiting and watery stools. I am thinking I must have had a partial blockage. These episodes can last up to 3 hours of full body sweating and nausea and vomiting and either at the same time or the next day comes the watery stools. Usually it is whatever I ate last and once that is out of my system I am done( [I know its a little too much information). The next day I am completely fine. Every time I see the GI doc, I get the same types of questions, how are you doing, any episodes of diarrhea, night sweats, chills, fever or vomiting, when I tell him about these episodes, he says he seems to think it is IBS. I never heard of anyone with vomiting and sweats with IBS, have you? I have had Crohns for 2 years now and I still cant figure it all out. I never know when to call the doctor or if the symptoms are from something else. I have cramping almost every day and if I don't have any cramping there is always a dull nagging pain in my right side. I am sick and tired of being sick and tired. I keep a lot of my symptoms to myself because I think people don't want to hear it anymore.

Sorry for the venting but I just don't know what to do or think anymore. Maybe I just have live in silence and not say much. I like my GI doctor but I am not sure if he understands what I am trying to say.
10-25-2013, 06:37 PM   #2
Dreamer
 
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My partner is in the ER and he is gonna be there now than 48 hours because they can't figure out whats wrong with him. They wanted to send him home...when he is in so much pain. Keep your faith in medicine and look for a better GI in your area, I hope it gets better soon for you.

My best wishes for you.
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10-29-2013, 06:37 AM   #3
jsesaic
 
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I totally agree about not knowing if it's crohn's or something else. As soon as i get even a small stomach ache i worry it's coming back! I always forgot that i can be ill without it having anything to do with crohn's haha!

All of your symptoms sound horrible though I guess the problem with IBD diseases is that not too much is known about them? I mean i was told after i was diagnosed that it's an extremely hard disease to diagnose! And every time i've been ill, the doctors always leave it too late to do something, then i'm hospitalised. It shouldn't really get that bad before something is done in my opinion....

But if you feel ill i say don't live in silence! On the contrary don't leave them alone until they actually do something haha I hope you start to feel better soon!
10-29-2013, 07:33 AM   #4
soccermom081105
 
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Thanks for the responses. I at least don't feel alone . I am hanging in there for the time being and keeping track of the symptoms vs foods I eat. I am also creating a "safe" food list which isn't much but it is something. I know I cant get through this but feel alone since my family doesn't understand
10-29-2013, 07:52 AM   #5
Khaya
 
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Hi guys, I'm new to the forum and have been recently diagnosed with crohn's after believing I had IBS for the past six years. I have been quite poorly over the last nine weeks and wasn't listened too by my G.P which resulted in a ten day stint in hospital.

Im in need of advice I have just been prescribed azathioprine yesturday and feel quite worried to start taking it after learning about the side effects. My consultant gave me two options surgery to remove part of my bowl or azathioprine for at least five years 150mg, so I chose the medication route.. but now I dont know if its best to have surgery.. any advice will be appreciated and if anyone can give me pros and cons of both options would be a great help.
Thank you
Khaya xx
10-29-2013, 10:17 AM   #6
jsesaic
 
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I've been on azathioprine for nearly 4 years and mostly it's worked well. The only problem with medication is it can inexplicably stop working, which happened to me. So I was put on Infliximab infusions alongside it but I still had to have ileostomy surgery. I recently had that surgery reversed and I am still on both meds but my specialist says that if I'm still well within a year I can just be on azathioprine

My advice would be always go for the meds first because they can work very well for years, and surgery can be quite a traumatic experience which I think should be a last resort. But of course it's entirely up to you, I hope this helped though
10-30-2013, 07:32 AM   #7
soccermom081105
 
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Khaya, I know your feeling of not knowing what to do or thin but I do agree with jesaic. I haven't been prescribed azathioprine as of yet. I am, unfortunately, a complicated case. I have other auto immune diseases that keep me limited in regards to medications. Hang in there though. We all will get through this
11-01-2013, 07:53 AM   #8
MissCadenza
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Soccermom - big hugs! And also keep nagging your doctor until he gets the point you're trying to make. I swear my GI is sick of me by now but at least he gives me what I need to know when I pester him, lol.

Khaya - Azathioprine is okay, and the side effects can be dealt with I figure it's better to be healthy and have my Crohn's under control and cope with any side effects when/if they happen because they're not guaranteed to happen. The worst I've got is slightly thinning hair. I can cope with that with a funky haircut and a few hair products. So I'd say try it, and if it doesn't agree with you then you'll be taken off it. I hear the horror stories of Aza on here and think 'wait a sec, I'm fine...' then feel a bit guilty!
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11-01-2013, 03:20 PM   #9
mish2575
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I've gone through 3 GI's before finding one that i feel understands the disease and listens to me.
11-01-2013, 07:14 PM   #10
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I have the exact same episodes. I used to have them A LOT but my gi dr found that my small intestine wont expand so certain foods can't go through and therefore must come back up.
11-05-2013, 01:44 PM   #11
tracy3808
 
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I completely understand what you are going through. Have had Crohn's for 20+ years and am still frustrated at not being taken seriously.

Very recently I went to ER because I have been vomiting for almost a week and thought I was dehydrated. The ER doctor pretty much told me that nothing was wrong and I was over reacting (without any tests). I was so frustrated, not only that the doctor did not believe me, but that the friend I was with now doubts my condition.

Less than a week later I was back, severely dehydrated and a CT showed a narrowing of my intestines that might require surgery. I spent 2 weeks in the hospital and lost 10% of body weight. I am convinced that a lot of the extra pain could have been avoided if the first time I went to the ER I was taken seriously.

The best advice I can give you is to know your body and make sure you are heard (even if you have to call your specialist from the ER).
11-05-2013, 07:47 PM   #12
Dreamer
 
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Thanks for the responses. I at least don't feel alone . I am hanging in there for the time being and keeping track of the symptoms vs foods I eat. I am also creating a "safe" food list which isn't much but it is something. I know I cant get through this but feel alone since my family doesn't understand
I hope you never feel alone. The people on this site are awesome,they understand and care, more than family members and physicians sometimes. I don't have Crohn's (my partner does) but I understand how hard it is and what limitation it puts on lives. And it makes me angry when people so close to us underestimate it. I wish you well with all my heart. And never feel alone, you have a friend/family in all of us. Don't worry about your family, I am sure they care but they don't have the same experience or education to really know how much this disease sucks. Hang in there, I hope you feel a lot better soon.
11-05-2013, 07:56 PM   #13
Dreamer
 
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I completely understand what you are going through. Have had Crohn's for 20+ years and am still frustrated at not being taken seriously.

Very recently I went to ER because I have been vomiting for almost a week and thought I was dehydrated. The ER doctor pretty much told me that nothing was wrong and I was over reacting (without any tests). I was so frustrated, not only that the doctor did not believe me, but that the friend I was with now doubts my condition.

Less than a week later I was back, severely dehydrated and a CT showed a narrowing of my intestines that might require surgery. I spent 2 weeks in the hospital and lost 10% of body weight. I am convinced that a lot of the extra pain could have been avoided if the first time I went to the ER I was taken seriously.

The best advice I can give you is to know your body and make sure you are heard (even if you have to call your specialist from the ER).
It really pains me hearing more and more about these awful experiences in the ER. You are completely right. Its your body, you understand if something is wrong. When you feel like something is not normal, the smartest decision to do is go to the ER because this disease has complications and you are the only one that can feel it and to demand attention. Last time my partner has an obstruction, they were gonna send him home, bleeding and in so much pain and he refused to leave and I am sorry you had to go through that, I hope its the last time.

Wishing you well
11-05-2013, 08:15 PM   #14
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I always feel that if you do not think your doctor is listening to you or being helpful to look for someone else. I was misdiagnosed by 5 doctors over a period of about 7 years telling me I had IBS. None of the medications/ recommendations for IBS helped. They kept putting me on a high fiber diet which continuously caused me to poop blood. Kept telling me any inflammation that popped up was nothing but a stomach virus. Then I finally found a doctor who really took my issues seriously and finally diagnosed me with Crohn's so I could be treated appropriately.
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