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GI doesn't believe me. So how far should I tolerate?

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Crohn's Disease
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Posted 4/27/2012 7:05 PM (GMT 0)
Sorry this would be a kind of vent. I'm really suffering from nausea and vomiting and can't take it anymore. I take zofran im 8mg injections and today was the last dose. I don't feel any better. I can hardly eat and when I eat, I want to vomit and nausea is horrible. Misuse of Motilium for 6 years made me liable to prolactinoma (a benign tumor in brain) and so I ended up taking only Zofran injections to control nausea and vomiting.
My real problem is my GI. I have been following up with him for 5 years now. Sometimes, I quarreled with him, left him and then returned back to him. I saw a lot of others but he used to be the only one who tried to relieve my pain.Since I only have persistent D, severe abdominal pain, weight loss, gastritis, duodenitis, GERD and rectal inflammation but NO naked eye ulcers, nobody believes that I'm an IBD patient and say this could be IBS but IBS meds do not relieve my pain. The only things that put my symptoms under control are pred and Entocort. He is the best in town and I can't find anyone else. When I was studying my masters, he used to tell me that I am stressed out and used to treat me as a hypochondriac. I used not to object as I was working a full time-job, used to commute twice per week to another town to study, had my studies,, worked another part-time job to get more money and used to take a university fellowship which required some tasks to be done. After graduation, he changed the way he dealt with me. However, now again he treats me as if I make up symptoms and pain. If I go to the ER, they will screw things up and will end up calling him and asking for help. I can't imagine how would I make up narrowing of the anus and the inability to have a bm, it is as if my rectum is closed. He told me that I'm in the middle of a rectal inflammation flare up and at the same time accuses me of making up things. I told him I need another oral med for nausea and vomiting and he said there weren't. I asked about a cure for mouth ulcers and he said there wasn't any other thing he could give me. He acted as a person who ran out of ideas and he seemed to turn me down.
I'm really depressed and feel as if I'm begging his help. Only colorectal surgeons believe me as they can see the inflammation and the narrowing themselves but they always tell me that they have to refer me back to him as he is the only one who knows what is better for me based on my condition.
Had you been me, would you continue with such a doc? I feel humiliated and I can't imagine seeking his help again for the sake of my colon.
I don't know why should a patient justify his/her pain to the GI. Isn't it enough that we suffer?
Thank you very much for listening.
Posted 4/27/2012 9:56 PM (GMT 0)
Hi. Sorry about your doctor. I have run into quite a few like that but I have the most amazing GI doctor now. He is kind and compassionate and works endlessly for me and my daughter. It took time and sometimes it was exhausting to try to find a good doctor who I felt comfortable with but was so worth it. You are the one who is sick and needs support from a good doctor. I would definately start looking and don't stop until you find one you love. My doctor was on the CCFA webstite but I met him in an E.R. Try the E.R. nurses because they sometimes know who the good doctors are. Maybe if you post which area you are in someone in the group may have a good doctor to recommend to you. You should never feel hopeless or humiliated because of your doctor. Your doctor should be working consistantly with you toward a treatment plan. I also found a doctor who is good for one person may not work for another. I tried a supposed great doctor in Boston and he was so uncaring. I skipped over him right away and moved on....

Good luck. I'm sure you will find the right doctor.
Posted 4/27/2012 10:15 PM (GMT 0)
Julie, thank you very much. Well, I'm not a US resident. In the town where I live this is the best GI. An acquaintance, may he rest in peace, who suffered from his stomach and liver, refused to be treated by such a doc. A lot of people refuse the way he treats patients but I have always born this for the sake of my colon. Now, I can't take it anymore.
Posted 4/27/2012 10:42 PM (GMT 0)
Hi Minnietoty,

I can relate to your frustration with your doctor, I once had a GI that gave me a colonoscopy without medication and when I complained and cried she told me to "shut-up", needless to say I never went back and I am scared to death of another colonoscopy.

I completely agree with JulieBC, you need to do whatever you can to find another doctor who you feel comfortable with in every way. I noticed that you said that you are not a US resident, does that mean you live in Canada, just asking because I know that in Canada you can go to any hospital and get a list of doctors that are available. You can also call the Canadian Medical Assoc. for a list. Sometimes I think a recommendation from someone is the way to go.

Please do not beg this A--H--- for anything, he does not deserve you as a patient, I would even go so far as to report him for mistreating you.

The other thing is, you know that stress is not good for anyone with Crohn's, well just reading your post I got stressed out because your doctor sounds just downright MEAN!!

I really hope you can find someone else to see, and I would definetly not go back to this doctor because no physician should ever intimidate their patient.

Good Luck, and my heart goes out to you.

 

Posted 4/27/2012 10:58 PM (GMT 0)
Cleanfreak, thank you very much. I'm neither a Canada resident. Well, you should never dread colonscopies. I have had 3 colonscopies so far and 1 sigmoidoscopy. We need these procedures to decide on the condition, take biopsies and rule out any other disease. For me, only biopsies showed inflammation, nothing else.
Take care!
Posted 4/27/2012 11:52 PM (GMT 0)
Thanks for your words of wisdom about colonoscopies, but my new GI knows about what happened and he only orders CT Scans to detect problems. That is how I was diagnosed with Crohn's, and whenever I have to go to the ER, I get a Scan.  Someone on another post mentioned the fact that there are parts of the small intestine that a colonoscopy can't see, and that is one of the reasons I really trust a Scan to find out what is wrong, I know though that you can't have them too often.

I have faced many, many surgeries including 2 major ones to put rods and screws in my back, but suggest a colonoscopy to me and watch me run.

Enough about me, going back to you and your doctor problem, I also think that if you can somehow let people know the area that you live in you might just find someone on this site that can help you with recommending a good, caring doctor who will treat you with the respect that you deserve.

Post Edited (cleanfreak) : 4/27/2012 11:43:01 PM (GMT-6)

Posted 4/28/2012 12:37 AM (GMT 0)
I agree with cleanfreak.. there might be someone who knows a great doc in your area. The one you are with sounds like a***hole.
Posted 4/28/2012 3:00 PM (GMT 0)
Thank you, Leebie3. I'll search for another GI. Why don't surgeons just treat us. They are very comprehending.
Posted 4/29/2012 12:53 PM (GMT 0)
I am so sorry. I have had similar experiences. It does make you depressed and feel hopeless. Best thing to do is stand up to him, chances are he will either start taking care of you correctly or walk out of the room. My last GI walked out of the room and told me I had 30 days to find a new dr when I stood up to her. Good luck on finding a better dr. I made up a list of what I want in a dr and I interview them. I finally found one, although he referred me to a specialist for my biologic meds, that expert said my Crohn's isn't active and I do not need meds. So I am back with the referring GI. He is wonderful and listens. I hope he never retires because I do not know what I will do then. I feel for you. We here can definitely understand what you are going through. Hang in there. It's your health and you deserve better care.
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