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Have you ever been made feel guilty?

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Crohn's Disease
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Posted 7/9/2011 7:33 PM (GMT 0)
Hi,

My real problem is that I haven't been diagnosed yet. I have symptoms: persistent non-stop diarrhea, severe abdominal pain and sometimes fever. Proctitis is horrible and makes me sometimes rush to the bathroom like a crazy. Last week, I told my doc that my eyes were itchy and he told me that he will refer me to another doc. I thought that it was an eye doc . It turned out to be an immunologist. He ordered a long list of tests which their results are not out yet. I was told after 4 years of constant pain and diarrhea ( I have been suffering for more than 13 years now) that this might be irritable bowel syndrome!!!! I have been on pred for almost a year now and can't stop it, Salofalk 4 g and Imuran and had to start Methotrexate but was told to wait unitl I see the results. I hardly ever eat anything (my food is very limited) as high fibers make me suffer a lot.

Has anybody ever been made feel guilty because of being sick and that you have to explain to the docs and your family that you really suffer and don't pretend it? I have incidents of severe flare ups where I had bloody diarrhea. By the way, I have seen 5 psychiatrists who denied my having any kind of depession. What shall I do? I feel I'll go nuts soon. Thanx

Posted 7/9/2011 11:04 PM (GMT 0)
Yes, I can completely relate!
As for what to do I am not sure. I too am currently undiagnosed and I am struggling with my GI doctor. Not only do I have almost all of the symptoms of Crohns, , and some blood work that is symptomatic of Crohns, but also the biopsy results to prove it. After the biopsy results my GI thought it had to be Crohns, but she did one more blood test and after that result came back "normal", a Crohns diagnosis was off the table. Now, all of this is apparently "all in my head", and I just have depression and an eating disorder (because I have lost so much weight). I have neither of these. I then was told to go talk to a therapist, who I did go to and she says that I do not have depression or an eating disorder, which I already knew. Every appointment I have with my GI I feel completely guilty because she makes me feel like I am flat out lying, and that all of this is my fault. I know my pain is REAL and obviously SOMETHING is wrong, but in that moment when someone, especially a doctor is telling you that it's all your fault, it's really hard not to feel guilty. I just have to take a little time, pull myself together, and realize that I know my body, and I know my pain and suffering are real and not made up. So yes, I can totally relate to you. I am currently on the search for a new GI, and I am trying to get into the Mayo Clinic in MN. I need a doctor to listen and so do you. I would suggest finding a new doctor if yours keeps doubting you or you feel like you need to convince them about how you feel, because no one should be made to feel guilty for something that is out of their control.
As for family, I have had people doubt me, but they soon realize that what I tell them is real when they can actually see me in pain. For the people who doubt you that don't have the ability to understand what it is truly like, try not to worry too much about what they say. They really don't have any idea what we go through on a day to day basis and I totally get how it feels when someone close to you doubts you. It's really hard, but I just remind myself that they truly have no idea what it's like, and I wouldn't want them to.
Keep your head up and try your best not to doubt yourself or feel guilty for something that is out of your control! Remember you know your body better than anyone else!
I hope you get answers soon and I'm sorry you have to go through this!
Posted 7/10/2011 3:05 AM (GMT 0)
Yeah there is a lot of mental pain to go with the physical pain. The most recent one that got to me was last year. I go for a special fishing permit in a place I love and I was so ill I didn't think I could stand in line to get my permit. Long line and hundreds of people. I asked the Ranger, whom I have known for near 20 years to help and I felt that he was not responsive. In fact I got the feeling that he thought I was trying to get over on him...... Mad and sad. Not sure if this is what you meant. I have been more succesful with NOT allowing folks disturb me of late but that got to me.
Posted 7/10/2011 3:43 AM (GMT 0)
On rare occasions, I have had people try to make me feel guilty about my condition. "Oh you should work out!" "You just need to eat better!" "You're too stressed!"

I often just let their stupidity roll off me like so much rain, but sometimes, if I like the person and genuinely want them to understand Crohn's, I'll explain how their advice would probably help my overall health, much as it would anyone else's, but it does absolutely nothing for the Crohn's itself. I also point out that when I was diagnosed, I was a strong young man of 16, and have never been one for worrying or nerves.
Posted 7/10/2011 4:53 AM (GMT 0)
I can totally relate. It took me 14 years and a horrible flare to finally be diagnosed. Many doctors just patted me on the head and sent me on my way telling me I had gastroenteritis--no tests. Before and after my diagnosis, my husband (he's my ex-husband now) accused me of overreacting or faking. Horrible.

Keep on pursuing a diagnosis. It's really important to know what you're dealing with so you can get the medical support you need. Hopefully with a diagnosis your family will be more understanding.

Was a colonoscopy one of the tests the doctor ran? It sounds like you need one. Blood tests may not pick up on much since you're on steroids and other meds for inflammation/Crohn's.
Posted 7/10/2011 3:02 PM (GMT 0)
Dear all,
Thank you very much. I really appreciate it. I felt that I was the only person who was made to feel that but your posts lightened my "frustration". CrohnsGirl2004, I didn't know that it takes that long to be diagnosed. My doc told me that my disease should emerge within 10 years and already 4 have elapsed but 14 years is quite a long time. This really gives hope!!!
Wishing you all, sufferers, good health.
Posted 7/10/2011 3:44 PM (GMT 0)
My husband was first dx when he was taken to surgery for what the surgeon thought was a simple appendectomy 35 years ago.  As it turn out his quick surgery lasted 5 hours as he had Crohn's obstruction and perforation of the small intestine.  He has had 4 surgeries, the last one in 2010.  In between surgeries he has done well and always worked fulltime.

Do not be afraid to look for a second opinion from a GI physician.  I have a hubby that will not allow anyone to make him feel guilty about his disease.  He is very good about taking care of himself and won't be guilted into eating or drinking anything that would cause his Crohn's to flair. He also stopped smoking with the last surgery.

Please don't let anyone cause you to feel any guilt about your disease.  You are a person with Crohn's.................Believe in yourself as we believe in you.

Kindly,

Kitt

Posted 7/10/2011 5:16 PM (GMT 0)
Stkitt,
Thank you very much. You made my day!
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